Nelly
#150739 - 02/16/05 09:37 AM
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
I think a support group is a great idea, I'm game. But any ideas on strumming up others. I try not to inform people of my fibro or ibs b/c it raises eyebrows if the person knows about it like I have lepracy (sp?) or something and if they don't know then they want an explanation. I don't know which is worse. And us fibromites look normal even though we feel like we have 90 year old bodies. So I don't know how to find fibromites in our area. You can't spot'em and they are probably not gonna tell ya. I know JenX is from the baltimore area and she has fibro also but I think she has been really busy lately as I haven't seen much activity on the Maryland IBS Support Board which she moderates.
We could kidnap Ruchie from Arizona and Linz from the UK and Laura Sue from ...I can't remember where she is from right now. Darn Fibro Fog!! Anyway then we would have an awesome group.
We could try to set up a meeting and try to get JenX to come too and go from there. 
Let me know,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
I'm totally game!
#150755 - 02/16/05 10:14 AM
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
Let the kidnappings begin!  I'm going to try and make Linz's support group meeting in England while I'm there! I hope she's pretty close to London becuase my friends are going to be like, "Where's Nelly off to now??"
Too bad there's not a fibro board on this site. Maybe I'll get my BF to whip me up a site and I can start my own. Now that would be cool! But yes, how to find other fibro chicks? You're right, as Seinfeld would say, "It's not like spotting a toupee!"
So maybe a board is really the way to go. I'll look into it. In the meantime, I'd love to meet for some tea somewhere if you're game! But you're right we'll need to find some more people and def convince JenX to come!
Hey-- question for you. Ruchie just posted that she's gained a bunch of weight when she took amyltriptaline. Are you on it now? Do you get any side effects?
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
Nelly,
Ya know there is a board on Fibrohugs.com maybe I will wander over and check it out. I don't want to post anything asking if there is anyone in Baltimore/Washington area that wants to form a support group right off the bat or they will probably think I am some crazy lurking on their boards. But maybe they have a support group section on their boards like we do. I'll get back to ya on that.
About setting up a meeting I am one of those people who can never make a decision, drives my hubby crazy!! So you name the time and place and I'll be there unless its a big schedule conflict or something.(Which I doubt no life have 2 kids lol!) The best way to contact JenX is by e-mail she is not on boards much lately. I think her e-mail is in her profile??? Have to check?
Amyltriptaline? Probably about the only thing I haven't been on or am not currently on. I keep complaining to my doc that my biggest problem is lack of sleep which makes my body fall apart. He isn't listening as well as I would like. He keeps increasing my dosage of Effexor XR and swears it will raise my seriton (sp?) levels and help me sleep. Hasn't worked. And then he prescribed Flexaril which is a muscle relaxer that supposedly has a drowsy effect. Only problem is I still have trouble falling asleep but then can't get up in the a.m. b/c I am so groggy. I am on a slew of other things for my IBS, I take about 8 or 9 different pills a day or at least I was I just stopped b/c I don't think any were helping. Now I only take Nexium for my GERDS, SFS, Naproxen as needed, and Flexaril supposedly to get some sleep. Considering I felt like I pulled a muscle at work today just from reaching over the table to turn a page I would say I ain't doing so well!!
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
Naproxen doesn't burn up your tummy? That's Aleve, right? I can't take it cos it'll send me into an IBS fit that lasts for days. The others I have all heard of except for the Effexor XR-- is that an AD? I was on a couple of ADs but they made me so depressed I was suicidal so i had to be taken off of them pronto.
The amyltriptaline I take only to go to sleep, although it's perscribed to depressed patients to take during the day in higher doses. It's not addicting as other sleep aids, and it boosts seratonin! It does make me a wee bit groggy in the morning though, so that might not work for you if you have to be up. 
Yeah, let me know about the other board you mentioned. Laura Sue mentioned Fibrohugs to me once, and I went there but it seemed a little sparse. It would be great to get one with a bunch of fellow IBS-ers from this board! Nothing like having a built in group of friends already there!
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
Hi ladies!
I think someone in Baltimore just recently started a support group for fibro through fibrohugs...if I'm rememebering incorrectly...I blame it on the frog fog! 
I was just thinking this morning how great it would be to have a fibro site! For some reason (maybe it's just me) there was something dark about fibrohugs that made me stay away. The IBS boards are so alive! One of the things I love about them!
Yeppers Nelly, the amitryptaline made me gain weight *sigh* It also made me VERY sleepy when I first started taking it. Is it helping with sleep? I hope so! *hugs*
How are you doing Tissy? *hugs* It sounds like the frog's got ya.  Let me know if there's anything I can do.
I'm SO groggy today! Definately got the foggies! I am fighting the urge to take a nap....but I'm not so sure I'm gonna win this one
Hope you two feel good!
Linz, LS, Jen X, anyone with fibro...join in!
Love, Ruchie
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Naproxen
#150795 - 02/16/05 11:40 AM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
Yes it is a high dose of Aleve. I am IBS-A but mostly D so I have to take 3 immodium AD with it. That is why I only take if absolutely necessary like when a migraine attacks. And I usually have to follow up w/ NuLev which is an anti-spasm thingy??
Effexor XR is an AD and it is supposed to help w/ IBS and the Fibro but I didn't notice any difference. And as far as mood changes it didn't effect me either up or down. So I stopped taking it.
I have to take kids to school in a.m. so I get up at 6:30 and then after I drop them off I have to go to work. So I need something that helps me sleep but doesn't make me groggy. I have a follow-up appt. today w/ doc will discuss sleeping issues AGAIN.
You are right about Fibrohugs I thought it is to hard to navigate not user friendly buy I think LauraSue said she posts over there. So I will try it. Maybe Heather could add another section to this board for IBSers w/ Fibro or actually I guess that should be Fibromites w/ IBS b/c I read the IBS is a symptom of fibro but not all IBSers have Fibro. If that makes sense??
Just curious are you not working due to the fibro or are you just between the last job and the one where you will work at home? I thought I read that post somewhere about you working from home??? I would love to work from home w/ this darn fibro, I am working on that goal.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Hey Girl!!
#150798 - 02/16/05 11:49 AM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
I am having trouble sleeping again, my mind keeps racing. I had this prob before but it went away for awhile. I am asleep but I can remember analyzing and thinking in my head all night long. FRUSTRATING!!! So know I am achey and pulling muscles doing the stupidest things like turning pages. Can you get workman's comp for that?? Just Kidding!
I will go to Fibrohugs and check out support group, thanks for the tip. And it's not just you that site is all dark colors and dreary and this site is nice soothing colors w/ cheery borders. It just feels more welcoming on this site.
I am sorry to hear that you are having a groggy day as well. I thought the Flexaril was making me groggy but now thinking about it I am groggy pretty much all day until I try to go to sleep at night. I could sleep all day but can't sleep at night. Do you feel like that??
How is everything else Honey? Are you having a flare or just a groggy day?
(((HUGS))) back atcha,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
Tissy, take a day off *hugs* I wish I could take over for ya 
YES! At night I finally seem to "wake up"! LOL It's so strange! I guess it'a ll part of it htough huh?
I seem to be in a flare the past couple of weeks. I know if I weren't tkaing vitamins and eating so healthfully I would be in horrible shape
((((Tissy)))) Be careful! When I start getting like that I'm dangerous   I've been known to drop things, break things, spill things... *sigh* stupid frog!
Let me know what you find on fibrohugs...I hope they have something for you!
Oh, do you take a multivitamin and vitamin c? How about echinacea and astragalus? These things REALLY help me (but chedck for interactions on the supplements to make sure they don't interact with the meds you're on). I probably take close to 6,000mg vitmain C a day when I'm good about it. It's truly a huge help for my firbo! The Prescription for Nutritional Healing recommends taking these things for fibro...it also recommends 5,000-10,000mg vitmain C a day!
Anyhow...I hope you feel good soon *hugs*
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
I am not working at all right now cause of fibro ANd hubby and I are not trying to have children for the same reason!
I don't know how you all do it!?!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
--------------------
Melissa
Friendship is thicker than blood. ~Rent
Print
Remind Me
Notify Moderator
|
Ruchie
#150812 - 02/16/05 12:29 PM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
I just can't naviagte that site you think it would be made real easy since it is for Fibromites who get the fogs. Maybe I am in to much of a fog right now to try it just frustrated me so I gave up. It wouldn't let me in said someone else w/ email address already registered then said it would send me a forgotten password e-mail momentarily and that didn't happen and then i just tried to find support board w/o signing in and no luckso I gave up. To cranky to mess w/ it now I guess.
I was taking a multi-vitamin and calcium but when I got the dizzies awhile back I quit taking all meds b/c I felt they weren't helping and my stomache turned at the thought of swallowing the pills. I started back on my Nexium and Flexaril I should probably start back up on mult-vit but the rest of my meds I stopped I will do w/o. I hate putting to much chemical crap in your body it seems so unhealthy prescription or not. If I felt they helped I would but I don't feel they were helping. I have doc appt today at 4 pm so I will have to run soon, but I will ask him about supplements Thanks.
Hope that darn frog lets ya have some peace soon,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Effexor
#150838 - 02/16/05 01:40 PM
|
|
|
|
Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
|
|
|
I just noticed on your post that you said your doc keeps increasing your Effexor dosage and saying it should eventually help you sleep. I thought I should tell you I had the opposite experience with Effexor, the more it was increased the greater problem I had sleeping. It is known to cause agitation and sleeplessness (not in everyone but in some people). I also have terrible nightmares and night sweats from it that interfere with sleep. What dose are you on? I made it up to 150mg and when it still wasn't helping I decided to try and get off it (that's been an ordeal ). I slept great when I was on Paxil though...go figure!
Print
Remind Me
Notify Moderator
|
Tissy
#150843 - 02/16/05 01:44 PM
|
|
|
|
|
|
I'm with ya girl! The site is tough to navigate...esp. when you're in a fog *sigh*
You don't sound good You don't sound happy either. What can we do to cheer you up?
If I were you I would...get hubby to give me a massage, watch candles glow while listening to some soothing music, have hubby bring in take-out for the fam (join in if you can...if not at least you only have to make your meal), and have him take care of the kids. *hugs* Wish there was something I could do...I will pray for you for sure!
Let us know if there IS anything we can do...we care about you Christie ((((((((Christie))))))))
Love ya, Ruchie
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Re: Effexor
#150945 - 02/16/05 05:17 PM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
I was up to 225mg and still no sleep and its weird you say it gave you nightmares b/c I started having nightmares too and night sweats. Weird huh? I don't feel any different on or off it though so thank goodness for that.
Thanks,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Rant
#150958 - 02/16/05 05:48 PM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
Hey Ruchie,
I am just cranky b/c I am not getting enough sleep. I went to doc today and told him that I am not sleeping well and that I am groggy all day. His solution is to take me off the flexaril and try to exercise more and I'll sleep better. Okay so when I went to him for the first visit I wasn't on anything and I couldn't sleep w/o my mind racing so he put me on the Flexaril to help me sleep now I have trouble getting to sleep but once I am asleep I sleep good but can't get up in the a.m. So now he takes me back off Flexaril so now I will be back to the mind racing thing and really achey w/o good sleep. SO FRUSTRATING!!!!
He said I could try valerian to help me sleep. Ever try it?? And then he told me to come back in 3 months b/c there is a sleeping pill that is coming out that is for long term use w/ no dependence issues. Oh great so no real sleep for 3 months!
Then I asked him about Vit C, etc. And he said that is really a placebo effect and he is okay w/ that if that is what I want to do. He said a healthy dose of Vit C, B12, etc. can't do me any harm. What??? Was that a yes or no?
Then I get a call from my mom who watches my kids while I am at work and my 7 year old is crying and her throat hurts. I had to run her to the docs at 6:30 pm and find out she has strep throat. OMG I want to run away. I love her more than anything but I don't want strep w/ Fibro. I know it will hurt magnified by ten, I normally have a little sore throat anyway w/ the fibro. But she is my baby and when she is sick she wants mommy and I want to make it all better for her so I will probably get strep.
Then I went to Giant to get her RX filled and they were to busy and not accepting anymore RX for the night. And the doc said she had to have first dose tonight so pain will stop. So then I go to Rite Aid and had to wait 45 minutes for RX to be ready and the whole time my poor baby is crying her throat hurts. I wanted to cry right in the middle of Rite Aid but I held it together. And hubby is at his annual fishing club meeting so I had to get the kids a bath and their stuff ready for school tomorrow and all I want to do is crawl in bed but I don't know why its not lke I'll sleep or anything.
So that felt good just to rant, bet you are sorry you asked what you could do to help, huh?
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
If so any side effects? And any tips for a good nights sleep? Because if I don't get sleep, real sleep I am going to have a meltdown. It doesn't help that my period is still here after 5 days, it usually lasts 3. The hormones are raging!! AHHH, men have it so easy.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
No side effects, very safe when taken as directed.
Print
Remind Me
Notify Moderator
|
Tina
#150981 - 02/16/05 07:00 PM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
Tina you are great! You can always be counted on to answer a post when it seems no one else is around. I was beginning to think I am the only one on the boards tonight.
Now if you could just tell me it works you will be my angel, b/c as we type I am downing a valerian and praying I sleep.
Thanks for being there,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
I take 2 extra strength every night an hour before I go to bed. They are safe and work well for me.
Like Tina said, no side effects and they are safe. A bonus, I often have seen this herb recommended for IBS as it is suppose to calm the gut! So there you go.
Highly recommend trying it. GL!
--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
Print
Remind Me
Notify Moderator
|
Tissy
#150992 - 02/16/05 07:45 PM
|
|
|
|
|
Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
|
|
|
I'm so glad that you were able to stop taking it without any problems...I've been having such a hard time I wouldn't wish it on anyone
Interesting to hear that you also had nightsweats and nightmares, my doc seems to think that's unusual and doesn't happen to many people...so good to know I'm not the only one!
Print
Remind Me
Notify Moderator
|
Vicam
#150995 - 02/16/05 07:48 PM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
What problems are you having? Maybe I am having problems and don't know it. I still can't sleep and I am real cranky but that could be from lack of sleep.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
I'm the weird one! Of course...I had to have the very rare side effects of valerian. Made my heart race. Docs think it interacted with one of my meds *grrrr!* I WISH I could take valerian instead of all this other junk. G-d willing one day I will......
Just wanted to let ya know Christie *sigh* Us fibromites DO NOT have it easy!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
I am so glad you have had a good experience with it. That gives me some hope. I am about to go to bed and I do feel a little drowsy so I hope it works. By the way is it just me or does valerian stink a bit. I mean I have a sensitive sniffer from the Fibro but really that stuff stinks. Thank goodness it is in pill form.
Thanks for the feedback,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Thanks Ruchie
#150999 - 02/16/05 07:56 PM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
I am hoping it works b/c I need sleep so I can have a better day tomorrow. I feel better now the kids are in bed and hubby came home from his club meeting and now I am going to bed. Sorry I was ranting earlier but thank you for your continued support. Now I believe I am off to bed.
Sweet Dreams,
Chrsitie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Problems
#151000 - 02/16/05 07:57 PM
|
|
|
|
|
Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
|
|
|
I'm having a lot of problems. Aside from still having the sweats and nightmares which means I don't sleep well, when I tried to decrease my dose I had a marked increase in anxiety and agitation, diarhea, nausea, weight loss, dizziness and a "zapping" feeling in my head (feels like your ears are being electrocuted). It was not fun. I toughed it out for two weeks but the symptoms didn't improve at all, so I finally gave up and increased my dose back up. Soon I'm going to try again to get off it...I'll just try and be more prepared this time.
Print
Remind Me
Notify Moderator
|
|
|
You poor thing! I cannot BELIEVE everyhting you are going through right now!
I don't know if you still have my #...I'll have to e-mail it to you again.
Ok, where to start: (these are my suggestions...take what you like and leave the rest!)
Forget your dumbo doco! Take the vitmain C. Take astragalus (helps with pain) and take echinacea (builds immunity). I would also take vitamin B in high doses and a regular multivitamin. If you can afford all of this, go for it!Just ask to make sure it won't interact with anything else you take. Thakn G-d I have not gotten a REAL cold in MONTHS (sooo rare for me) because of the vitmains and supplements. My fam is NOT into the naturopathic way of life--but they swear by echinacea.
We're going to get you through this *hugs*
This is what I do when I'm sick or hubby comes home sick and I am trying not to get what he has: Drink as much as humanly possible. Tea, soup (chicken soup is great or whatever you have in the house), water...lots of good water, stay away from sugar (it's not goood for the immune system and depletes vitamin absorption...so I've read...I'm not a doc no way...just telling you what I've read). I also RELAX and meditate. Just close my eyes and picture beautiful scenery (picture things that make you happy! I like scenery..). Do gentle stretches. Take a long hot bath/shower. If your head hurts, use a damp cloth. When we are relaxed it helps our immune system cope better (not easy...I know!) *hugs* Personally, I limit my diet during these times as much as possible to soups, tea, water, a bit of fruit, and rice (I don't eat applesauce but if I did I would...same with bananas).
This might sound strange...and like I said take it or leave it...but I'm just offering the best advice I can give for one of my best fibro pals! *hugs*
I am SO SORRY you're hurting like this! It practically made me cry to read yor post
Keep us updated PLEASE!!! We REALLY care about you Christie. And, YES I'm GLAD I asked!!! Silly!
Take care, ok? And if you need anything...write/call...whatever! Shout! LOL
Sending love, prayers, and good cheer your way!
Love,
Ruchie
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
When I first started taking valerian, I bought the capsule form with powder inside (Solaray brand) and I couldn't even keep the bottle opened because it smelled so bad! Seriously, I though I got a contaminated bottle!
Now I take a capsule with liquid form valerian in it and there is no smell.  Plus, the liquid is "suppose" to be more effective as it is better absorbed.
I get it at whole foods or wild oats. It's by GAIA HERBS and it's called Liquid Phyto-Caps valerian root. It's suppose to be a more concentrated full spectum alcohol-free vegetarian capsule.
I think it is more potent than the powdered form as the bottle says it is equivalent to 2000mg crude herb.
The website is www.gaiaherbs.com in case you want to check it out. But you could always get it at whole foods or wild oats and probably would be cheaper.
I suggest you try the powdered first, but if you aren't happy with it, don't give up on valerian totally. The liquid form may be another option for you!
--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
Print
Remind Me
Notify Moderator
|
|
|
I am HOPING the valerian does it for you. If it doesn't give you side effects SUPER DUPER!
Here are some other ideas for sleeping peacefully:
Begin to dim the lights an hour or so before bed. This will tell your brain/body to slwo down!
Drink some tea, put on relaxing music, read something enjoyable (but nothing exciting as that will keep you awake).
A little while before you get into bed, picture yourself sleeping peacefully. Breathe in and out slowly and picture things in slow motion. Allow your body to relax.
If I think of anything else I'll let you know! My goal, G-d willing, is to get off the fibro meds. Might sound crazy...but I'm determined (I say this as I'm in a flare myself right now!) I will need to do this in order to have children and it's important to me! And I believe I will do it. With meditation, eating right, relaxing, taking care of myself, praying (lots of that!), and vitamins/supplements. I have been slowly integrating the things I wrote above. The only reason I'm in a flare right now is because I overate the past couple of days and didn't get enough liquids (I didn't listen to my body!) and I pushed myself to the core (again...didn't listen to my bod!)
I hope that the things I'm doing thata re helping me so much will help you too *hugs* We ALL desevre health!!!!
Sending you love and prayers,
Ruchie
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
Fibro-friends, hello!
Before I forget, does anyone else take a Magnesium complex supplement? I read that Fibromites are usually low in Magnesium, Manganese and Malic Acid, all of which are used for muscles to get energy! I take a great supplement (which I';ve run out of, darn it  ) that has all of them in and the lady at the HFS said other Fibromites had had success with it.
Ruchie - watch you don't OD on vitamin C! It is possible and you are taking ALOT! I only take 500mg a day!
I'm in a flare right now. Me thinks coming off my Celexa was a bad idea as I've been flaring ever since. Could be a coincidence as I had a chest infection and now another virus, but I'm back on the happy pills! At least I proved to myself that I can make it through the withdrawal.
Wish we could all meet up! That would be so cool. I must get organised for my meeting...hopefully people will turn up this time! I'm going to put notices in the doctors, HFS, hospital, etc and in the local paper.
I'm seeing my GP on Monday and am hoping to get a referral to a pain consultant or a rheumy. Si's discovered a couple of names with our insurance company so now I have a name to suggest. Really, my doc is hopeless. She could have referred me to SOMEONE. Surely it's no more difficult for her to find a specialist than it is for me?! Maybe I'll change docs. It was a nice change to find someone who knew something about Fibro, but she ain't great. Anyway, anyone had any luck finding a physiatrist?
Print
Remind Me
Notify Moderator
|
|
|
I read too that the dose for sleep was 25-50mg taken at night, and the dose for its anti-depression value was 150-300mg. At the higher doses amitriptyline does give nightmares and sleeplessness. (This info is available at http://www.mentalhealth.com/drug/p30-e01.html)
One other side effect I found listed was increased breast size. Huh?? Has anybody gotten this, or weight gain?
~nelly~
Print
Remind Me
Notify Moderator
|
Fibro
#151060 - 02/17/05 06:17 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
Have you ever tried soma to sleep? I've taken it when I absolutely can't fall asleep and it works great for me. It does burn my stomach just a little, but no more than valium for me. Nothing like aspirin, which really burns.
I'll just do my own forum for fibro, I think. I'll work on it until I get bored, LOL! I do have some time between jobs right now. I just got official confirmation yday that I got the contract to work from home for 18 months for the NRC.
During the time from the 2nd week of December (when my last office was closed and all my coworkers lost their jobs with me ) and March 1st when I start the contract, I am officially "on vacation." In that time, I got an unofficial diagnosis from a doctor for fibro-- unofficial because it's not on my chart and hence not reportable as a pre-existing condition. When I get new insurance (I am uninsured, as I have no current job) I want to be treated for it, but until then, I'll go see a doctor in England when I'm there the last 2 weeks of March to get some medication and more information about the condition. That's the plan so far.
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
Ugh, my GI put me on amitriptyline for my IBS, actually, and I ended up really, really dizzy and groggy, even on 5mg/day taken right before I went to bed! Then again, I've had a reaction to like that to every AD my GI or my neuro tried to put me on...
--------------------
Melissa
Friendship is thicker than blood. ~Rent
Print
Remind Me
Notify Moderator
|
|
|
Oooh, bummer. Did the effects go away during the day? Or were you continually dizzy all day? I totally understand about not being able to take meds! I have adverse reactions to so many of them!!
How's school, btw??
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
It was continual! I'm on no meds except peppermint caps and a mulitvitamin now, since they can't find something that a) I don't have some reaction to (like Bentyl, apparently I'm allergic to it, it made me shake uncontrollably for days or any of the ADs they put me on, that made me really dizzy and groggy and unable to function!) or b) just plain doesn't work, like Levsin. So basically I've given up on drs for the moment and just am trying to work stuff through watching what I eat, getting enough sleep, and trying not to stress too much.
School's going alright, I'm still on co-op until the end of March, but I'm taking two classes at the same time. The classes are alright, the one prof's fantastic, even gave us a group take home midterm this weekend! The other prof is an ass in terms of grading and requirements (it's a lab course), but I think I've mastered the art of getting the highest possible grade from him (which is always a 9/10, never a 10/10)
Excited about the new job?
--------------------
Melissa
Friendship is thicker than blood. ~Rent
Print
Remind Me
Notify Moderator
|
|
|
Now if that was the case, increased breast size, than I would keep taking it but no such luck at least not for me. LOL!
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Re: Problems
#151107 - 02/17/05 07:20 AM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
i definitely hear ya as far as anxiety and agitation go but my D hasn't come back in awhile and I have not had weight gain or loss but I did go through a real bad dizzy spell right around X-mas whenI stopped the Effexor. But I would think any withdrawal symptoms I had would have stopped by now so maybe it is just that I am not getting enough sleep?? Thanks for sharing with me I appreciate it.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
9/10! What a tease!! My lab profs were always the hardest graders. Gotta hate that!! You're a 10/10 in my book!
I'm way excited about the job, and I get to relearn everything about nuclear energy, which I always loved in school! The program is going to be a bear to organize (40 speakers in 3 days, with 4 languages!) but hopefully I'll get some help with staffing my team from the NRC. Should be fun!!
~nelly~
Print
Remind Me
Notify Moderator
|
LOL!
#151111 - 02/17/05 07:26 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
I told my BF that, and he said GO FER IT. LOL! Men.
~nelly~
Print
Remind Me
Notify Moderator
|
Re: Fibro
#151117 - 02/17/05 07:30 AM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
Sorry I missed the part where you lost your job! But that's okay right? Now you got a better one working from home.
What is soma? Is it an herb or an OTC? My doc refuses to prescribe me something to help me sleep he thinks I will get addicted. I have never been the addictive personality. I can drink but generally don't , never smoked, and never used drugs just didn't ever feel the need. I have been on painkillers before and never got addicted took them as prescribed and then stopped when doc said I should. So what is up w/ him I don't know? I mean I sat in his office and told him I am not getting sleep and I look tired. And then he asked me about diet and exercise and how I feel in general and then said "Well sounds like you are doing great see ya in 3 months!" I swear I looked all around the room confused thinking did what I hear myself say actually come out or did I just think it and instead told this guy I feel great. Either that or he is real dense???
That's a bummer about the insurance but a good thing that it isn't on your charts those insurance guys are a pain in the neck when it comes to pre-existing conditions.
I hope you have a good time in England and please share any useful info you get from the doc in England. Sounds like a good plan.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
I can always count on you to put a smile on my face! (love the dumbo doco remark) I think I am going to start taking extra vit C besides what is in my multi vit. I always heard to take vit C when you were sick or felt a cold coming on. So why wouldn't help w/ Fibro? The same w/ echinacea. I am having a cup of Echinacea Complete Care tea right now to try and ward off the strep.
I definitely need to up my intake of fluids, I have been a slacker lately. I was surprised when I got my sonogram for my ovaries the other day and the tech asked if I drank alot of water b/c I was very well hydrated on the inside. Who knew, I haven't been drinking as much water as I should.
Okay now I want to take your advice on the meditate thing but it is so hard for me to get a quite moment to myself. I have to get up an hour earlier than the kids and creep around the house in the a.m. just so I can read some scripture and pray. And I don't think I can get up any earlier. And my kids do this thing where if I am not in eye sight they start calling my name and when I "What" they say "I love you" and of course I answer back "I love you too." and they keep going in a circle like that until they locate me. They are using the sound of my voice to locate which room in the house I am in. I really can't get to irritated w/ them b/c at least they just don't keep calling my name over and over, instead they tell me they love me, unless I don't respond then they do. 
I am reading the Arthritis Foundation book on Fibro and it has stretching exercises in there I will have to start those. As far as limiting diet this could be hard I find myself eating a really healthy lunch and then craving something sweet so bad I can't stop myself from eating junk, like chocolate. Unfortunately I have to eat a whole lot or really rich chocolate to have an attack. I almost wish it gave me an immediate attck so I wouldn't eat it.
I really appreciate all your support. And everyone else who responded!! You guys are great on this board. 
(((HUGS))) and prayers back atcha,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Thanks Beth!
#151142 - 02/17/05 07:58 AM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
Yeh the powder in a capsule is what I am taking. And I had problems with my GERDS last night so everytime the reflux happened I would get this awful taste from the valerian. YUCK! But it did help me get to sleep. I layed down on pillow and remember looking at clock and it said 11:24 and I thought to myself if I am asleep by 11:30 that will be 7 hours of sleep which would great compared to the last couple of nights. And then I think I fell right out b/c is the last thought I had. But then I had disturbing dreams last night but I don't think it was the valerian b/c its been gooing on. So if I could just get rid of those I will be doing great.
Thanks,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Any chance...
#151147 - 02/17/05 08:06 AM
|
|
|
|
Linz
Reged: 09/01/03
Posts: 8242
Loc: England
|
|
|
...of getting your kids into doing yoga with you? They might find it funny! Not quite as serene as it could be, but it'd be better than being yelled at while you're doing it.
Si was nagging me to do more exercise last night so I did my yoga practice today....with a puppy on my lap for the breathing exercises! It was the only way to keep him quiet!
I get you on the sweet stuff! I do not have the willpower that Dalia and Ruchie have. I've stopped having spoonfuls of sugar in my tea on bad days though! Now if I could just not feel the need for chocolate or ADBs!
Btw, I swear by the vitamin C and Echinacea thing. I've had alot less viruses since I started that. Not doing great atm, but then nothing's perfect!
Print
Remind Me
Notify Moderator
|
|
|
I fell right to sleep but then had disturbing dreams. Any advice on that perhaps the soothing music would help before I go to sleep. That way my mind will be in a peaceful mode and possibly not do the nightmare thing.
Good for you on trying to come off the meds. It is a hard battle though! I am down to just Nexium and a multi vit and then NuLev and Naproxen only if really needed. And you see how well that is going!? Well maybe the valerian will solve the sleep issue and then I need sweet dreams, and to stop the darn sweet cravings. I mean I literally paced around my office after lunch yesterday trying to find something sweet. And while I was at Rite Aid last night I bought a whole big heart shaped box of chocolates leftover from V day. Thank goodness my big dog knocked them on the floor and ate them when I wasn't looking. But now I worry that the dog will get sick and it will be my fault b/c I had to have the chocolate. And she is hubby's dog, he would be so upset! I heard chocolate is really bad for dogs!
Anyway I feel a little better today after some much needed sleep. So cross your fingers for tonight.
Your the best Ruchie.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Linz
#151153 - 02/17/05 08:23 AM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
Thanks Linz that is a good idea actually! They love to do whatever I do. I will give it a try. Okay but now I am trying to picture you doing yoga w/ a puppy in your lap. And all I can picture is you w/ your eyes closed doing breathing with a puppy trying to lick your face wondering what in the h*ll you are doing? LOL!
My hubby got his mom to give me her health walker machine (she never uses it except to hang clothes on it to dry) and so I do that for about 15 minutes in the a.m. it is all I can last so far. Its one of those things were the feet glide back and forth and the handles look like ski poles and they glide w/ the feet. So it is low impact which I like.
I really scare myself w/ the sweet stuff. I mean I was like a mad woman yesterday trying to find some kinda candy or anything sweet. And it felt like my whole body was craving it.
Sorry to hear you are not doing so great right now! Are you in a flare?
Hope you feel better soon and thanks for the advice,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Christie
#151168 - 02/17/05 08:35 AM
|
|
|
|
|
Linz
Reged: 09/01/03
Posts: 8242
Loc: England
|
|
|
Yeah, I'm flaring. Not too bad on the aches and pains side, but I'm so tired and I've had a headache for pretty much three weeks now! So fed up. Had a full-on migraine yesterday.
I'm supposed to be job-hunting and doing DIY, but it's all I can do to make sure I get washed and dressed and feed myself and the dogs!
Print
Remind Me
Notify Moderator
|
|
|
Hey Tissy! How'd you sleep last night?
Meditating with kids 101 I would let your kids know mommy is going to take 5 minutes to herself. Put on a timer for 5 minutes. Two minutes is five is too many. And sit in a chair and close your eyes and relax. I taught kindergarten with 20 kids and I HAD to take a break while they ate lunch. The kids knew unless it was an emergency to stay in their seats while Morah (Hebrew for teacher) sat and ate her lunch!
That is SO ADORABLE! It's like Marco Polo only with I love you! Awwww!
Def. try the stretches. I have the book too btw! I haven't done their stretches...I do my own. Let me know how those work for you...maybe I'll have to give em' a try!
When you crave something sweet (I am a true blue sugar addict...so it ain't easy, but oh so worth it!) have a fruit instead. Buy yourself exotic fruits and go crazy if you like! Tyr a bosc pear, red anjou, blueberries (filled with powerful antioxidants!) kiwi....whatever you enjoy that you can tolerate!
I hope I've helped some. I just want you to feel good *big hugs!*
Love ya!
Ruchie
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
Hey Linz!!
I took a magnesium supplement and it gave me D! I even took it with calcium! I should try it again though...may have been a fluke. And maybe I won't take as much of it and see how it goes. But you're right...many of us do lack that good ole magnesium!
Thanks for the tip Linz. My vitamin supplement that the naturopath here in town gave me has almost 850mg per does (I take it 3 times a day). I'll have to double check my info. there!
Oh Linz *hugs* Flares are the WORST! Yes, I wish we could all meet up....and that we lived close by. Although, I'm a germaphobic...and I probably wouldn't come to close to you when you're sick. BUT I would at least come over and do your dishes!
Doctors. Iv'e had it up to my eyeballs! The only doc I like is my pain specialist. She's great! What is a physiatrist Linz?
Keep well...get better soon! *huge hugs*
With love,
ruchie
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
...is a doctor specialising in Physical Therapy and Rehabilitation. Mark Pellegrino, the fantastic patient-expert, is one. Sounds great for Fibro as they cover exercise, stretches, pain relief, sleep help...everything we want! Just wish I could find one.
Print
Remind Me
Notify Moderator
|
|
|
When I was on amitryptaline I had awful nightmeres, C, gained 20 pounds...(which I did NOT need), my breast size has increased, and so has my tush! I want off these meds! I'm on nortryptaline now as my neurologist said the side effects are not as bad as amitryptaline. It gave me hemms! And I'm not losing weight! Grrr!
Any suggestions anyone? Thanks so much for posting this Nelly!!!! I thought I was crazy
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
Okay, hadn't heard that hemms was a side effect! I've got an awful lot atm and it's peeing me off as I make sure to never strain. Grrr.
I had vivid dreams and talked in my sleep when I was first on Celexa, but that's gone now. Don't think I sleep deep enough any more! If this doesn't get better soon, I'll be begging my doc for Ambien...she's refused to give it to me so far.
Print
Remind Me
Notify Moderator
|
|
|
I DO have increased breast size from it...you can have it! I wouldn't mind it so much if the rest of me had stayed the same ....now none of clothes fit and I have too much weight for my tiny bod!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
Get a new doc! What do you mean she's refused to give it you? The NERVE!!!!
Poor Linz...don't you go through enough? *hugs*
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
Have you looked for one? They must be a bundle! Maybe there's one here...I'll have to look into it! Thanks Linz!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
My doc has me take it 2-3 hours before bed. Would that help you?
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
New doc
#151204 - 02/17/05 09:11 AM
|
|
|
|
|
Linz
Reged: 09/01/03
Posts: 8242
Loc: England
|
|
|
I'm going to see her on Monday with some names she can refer me to, then I might change. My GP before her was sooo incredibly useless and condescending that it was a nice change to have a friendly doc who knew what Fibro was! But she's a bit behind the times in her opinion of Fibro and is rather anti-medications. I'm taking way too much Co-codamol atm as it's the strongest OTC painkiller there is and my doc won't give me anything better.
Print
Remind Me
Notify Moderator
|
|
|
I'm with ya Linz! The rheumy that diagnosed me was usless other than the diagnosis. It's so disheartening! *sigh* I think we should be the docs! We def. seem to know more than they do...and we can DEF be there for our patients!
I hope you find a great doc...and soon! You deserve it! *hugs*
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Nelly
#151207 - 02/17/05 09:21 AM
|
|
|
|
|
|
I would LOVE it if you would doyour own board! You would do such a fantastic job!
Btw, I've been meaning to tell you...you're ery funny! I was reading your post about the attack you've been having and I wrote this whole reply and it got deleted before I could send it--crazy computer! Anywa, you have such a great sense of humor and you're a fun loving gal who loves life! I admire that in you *hugs*
I hope your attack is over? Feel good...and thanks again for always making me smile!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Re: Melitami
#151208 - 02/17/05 09:22 AM
|
|
|
|
melitami
Reged: 02/23/04
Posts: 1213
Loc: Ewing, NJ, USA (IBS-D, Vegetarian)
|
|
|
I honestly don't know. I stopped trying to take any more meds or see any docs about a year ago, since I was having such nasty reactions. I originally took the amitriptyline in the morning, and it made me really dizzy and groggy and not able to function. Then the doc said take it at night before bed. Still did the same thing all day, so I gave up because I can't live like that as a student. I'm stable enough that I can make it to work and stay there most of the day, just may have to go to the bathroom a lot on certain days, but that's loads better than I was doing in Dec 2003 when I missed 3 weeks of work because I was in such horrible pain! So in my case at least, I'm through with doctors for the time being. I've gotten myself a lot better without meds than they were doing with their meds and their high IF diet recommendations.
--------------------
Melissa
Friendship is thicker than blood. ~Rent
Print
Remind Me
Notify Moderator
|
|
|
I've read that a lot of docs are scared to prescribe sleep/pain meds. If their patients get addicted they are somehow liable. Anyone else heard this?
It's totaly unfair! There are SO MANY people in pain...
Can you get a different doc? One that deals a LOT with fibro patients and will give them what they need? I found my pain specialist through my GP and when he said that she works with fibro patients on a daily basis to help with their pain...I was sold!
The whole medical system is getting on my nerves (deep breath Ruchie...relax....ahhh...)
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
You're AWESOME! I give you SO MUCH CREDIT! How did you do it? I want details! I'm so proud of you...you go girl!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
I forgot to go back and respond to what you said last week re. the whole sugar thing. It is NOT you...I just think everyone will leave me if I'm not sweet and good all the time. I'm changing this though as I've had it with trying to be perfect. Now I'm just trying to be me
You CAN do it! If it's that import. to you you can go off sugar. I'm on day 9! Yippee! Good for you on stopping the spoonfulls...that's excellent!
I really hope you feel better soon! *hugs* Sending prayers your way...
P.S. Thank you for helping me learn it's ok to be me. You're a fantastic friend!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
I can barely post anymore! I feel like I'm gonna just fall over with my head landing on the keyboard *ouch!*
I NEED to go to the HFS and the Kosher grocery before Shabbos tom. G-d help me...I DO NOT want to get into an accident!
At the HFS I may ask them for something to help boost energy. Ginseng interacts with nortryptaline...so I can't have it. If they suggest something else I'll try to remember to let you know!
Take care *Linz*
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
SWEET CRAVINGS! I read all the info. I can when a doc prescribes a med. And I ask about the common side effects before I'll even take it. The meds in the tryptaline family have a side effect for SWEET CRAVINGS! So if your cravings for sweets are worse than they were before the med...now you know why! You can imagine how difficult this is for me being a compulsive overeater...but I HAD to get the sugar out! Thakn G-d it's working so far.....
Now if only I could wake up! LOL
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Ruchie
#151215 - 02/17/05 09:44 AM
|
|
|
|
|
Linz
Reged: 09/01/03
Posts: 8242
Loc: England
|
|
|
Do you know if Ginseng interacts with amitrityline too? Cos I'm taking both!
Print
Remind Me
Notify Moderator
|
|
|
--------------------
Melissa
Friendship is thicker than blood. ~Rent
Print
Remind Me
Notify Moderator
|
|
|
I hope not! I wonder if that's why it made me jittery when I took them both? Call the pharmacist...they should know...and let me know what you find out!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Soma
#151226 - 02/17/05 10:04 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
Soma (carisoprodol) is a medication prescribed for sleep. It's a skeletal and muscle relaxant, and comes in a round white pill. I usually take 1/2 of one to sleep. It wears off in about an hour and by then you've achieved natural sleep, so there are no drowsy after effects when you wake up. It does churn up my stomach a little, but it's the best sleep aid I've found so far.
~nelly~
Print
Remind Me
Notify Moderator
|
Re: Nelly!!
#151227 - 02/17/05 10:05 AM
|
|
|
|
michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
|
|
|
My email is BROKEN!! I can get but not send, working on the problem but wanted to let you know I've sent you a package!!
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
I'd never heard that term! All the PT specialists I know are Kinesiologists. I have a friend in med school right now who is studying that. He did his undergrad in sports medicine.
~nelly~
Print
Remind Me
Notify Moderator
|
Michele!!
#151229 - 02/17/05 10:12 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
You are just the BEST! Thanks for the heads up and I'll look for it in the mail!!
{{{{{{{{{{{{HUGS!!}}}}}}}}}}}
~nelly~
Print
Remind Me
Notify Moderator
|
Linz!
#151233 - 02/17/05 10:17 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
Try the one at the pain clinic you sent me!
Prof. Daniel Austen (fibro doc) 011-44-170-765-5151
Email: daniel.austen@ntlworld.com
He was so empathetic over the phone, I almost broke into tears when I hung up! He sent me a pack of info via email that had all his prices and info about his practice. It breaks me up that I won't be able to squeeze in a visit while I'm in the UK, but there's no reason why you can't!
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
As usual you have something to say which is both uplifting and warms my heart!! {{{{{HUGS!!}}}} I am working on the site right now, but it won't be usable for about a month, probably. It's a fun project, just the thing I need to keep me off the streets and occupied til I win that big lottery jackpot!! My tummy's behaving today, which is good considering the fistful of meds I threw at it to keep it at bay! Now if I can just stay away from the evil oreos BF left lying out...!
Lots of love,
~nelly~
Print
Remind Me
Notify Moderator
|
Question!
#151269 - 02/17/05 11:10 AM
|
|
|
|
|
heather7476
Reged: 08/09/04
Posts: 2996
Loc: South East Michigan
|
|
|
What are some of your sympotoms with Fibro? Just wondering!!
I feel for you guys and hope things get better soon!!!
HUGS!!!!
--------------------
Heather7476
Print
Remind Me
Notify Moderator
|
My symptoms--
#151285 - 02/17/05 11:43 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
Here are some of my symptoms. Some are weird and obscure I think. I can't believe there actually is a catch-all for everything I've been feeling all my life!!:
Symptoms:
IBS
Constant lower back ache
Skin pain on hips, back, neck
Blinding headaches
Achy after exercise—I actually feel worse afterwards and it lasts for days
Can't walk long before being so tired I must lie down
Can't think straight… It hits me in the middle of a sentence. I just can't finish my thought and just trail off… Happens ALL THE TIME! Don't think I've finished a sentence… since…
Restless Leg Syndrome—I can't keep my legs still. I constantly bob them up and down, and I kick violently in my sleep (think scoring a soccer goal) and wake myself up. My legs feel like my bones are going to jump out of my skin if I don't move them.
No energy, ever. I feel run down even after I've slept.
I always have to sit down if I stand for more than 5 minutes.
When I sit down for too long I have to lie down because my back feels like it is being compressed by a 5000 lb. weight
My throat hurts every day
Runny nose and eyes. Sex-y, no?
My skin feels like it's being tickled when I wear clothes. I scratch the back of my neck constantly but nothing helps.
I'm oversensitive to smells
Loud noises make me feel like there's sharp, cold ice puncturing my ears. I jump at loud noises and feel them in my chest even hours later.
I get headaches and stomach aches after I wake up from taking a nap
If I bump my hand it hurts for hours afterwards
I cringe when people hug me, because it hurts to be touched
If I think of more I'll let you know!!
~nelly~
Print
Remind Me
Notify Moderator
|
Nelly
#151298 - 02/17/05 12:11 PM
|
|
|
|
|
BL
Reged: 06/01/03
Posts: 3522
|
|
|
This doctor I saw Monday for my back problem is a physiatrist. This is not a physical therapist. They go to med school and then 4 more years. It's kind of complicated. They treat a wide variety of patients----those with arthritis, back problems, fibro, muscular dystrophy, celebral palsy, etc.
The one I saw is affiliated with a spine clinic. He examined me, ordered an MRI and reviewed the results with me, diagnosed the problem and then referred me for further care (which includes PT). He also does spinal injections, if needed.
I had never heard of this kind of doctor until a friend of mine, who's a nurse, recommended him. I liked him because he looked at the whole picture instead of just one aspect---and helped me with rehabilitation.
Check this website out. It explains what they do.
http://www.aapmr.org/condtreat/what.htm
Print
Remind Me
Notify Moderator
|
That's so cool!
#151308 - 02/17/05 12:25 PM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
I didn't even know of this part of medicine before! I think we need more doctors like this!
~nelly~
Print
Remind Me
Notify Moderator
|
My symptoms
#151317 - 02/17/05 01:01 PM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
When it first started I was really tired and felt like I had the flu and then I would frequently get migraines and tension headaches. I would also complain to my hubby alot that I had pulled a muscle in between my shoulder blades, or in my knee, or thigh, etc. I would always get sinus headaches too but mostly I was just TIRED. And I could remember sleeping at night but thinking over my problems or analyzing my day or compiling a to do list, but I was asleep just not all the way evidentally. Oh and short term memory loss was another, cold all the time,clumsy (dropping stuff).
And now on good days my symptoms are just a slight ache in my joint areas that if I don't think on it I don't notice until hubby asks if I ache. On a bad day I am all of the above again. It sucks sometimes but there are good days when I almost forget I have it until I miss out on sleep or get a cold/virus and then it comes roaring back.
I know you have been having a hard time do you think you might have Fibro or were you just curious.
(((HUGS)))
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Nelly
#151320 - 02/17/05 01:21 PM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
Wow! You sound just like me!! I always find that amazing when I read another Fibromites symptoms or like when I looked up the symptoms for the first time I was like OMG I'm not crazy. And all these things that my hubby called weird quirks are not so weird anymore they have a name to them now, Fibro. I have always had what my mom terms as a weak back. I would get a spasm in my back and drop to the floor, still do sometimes. And I could never exercise it always made me achier.
I am so with you on the walking and standing to long and always low energy. My mom use to say you are just lazy. And I am forever asking my hubby midsentence "What was I just saying?" or I can't find the word to finish a sentence, brain farts I call them. I always have a mild sore throat and semi-stuffy nose. I am oversensitive to smell, I am always saying in disbelief "Can't anyone else smell that?". The noises aren't to bad unless I have a headache. I get the skin creepy crawlies. And if I bang a part of my body on something I swear I am severly injured b/c it hurts SO bad.
And the Leg thing I was told that I don't have restless leg syndrome unless I am kicking at night. As far as I know I don't b/c hubby never said anything and I haven't awakened myself. But during the day I can't keep my leg still, I am constantly swinging or somehow moving my leg and my hubby will reach over when we are in public and put his hand on my leg so I know I am doing it. It is like a habit now I don't realize I am doing it and he said it makes look nervous or jittery. i get leg cramps really bad at night I think b/c of all the activity my legs get during the day.
Have you found that you have had these symptoms since childhood? I used to get unbearable knee pain when I was a pre-teen and cry hysterically. My mom told me it was growing pains. I got headaches badly as a child and although I didn't have IBS as a child I always had difficulty going poo it never really came out easy. Now it comes out to easy most of the time.:p
Sorry to ramble but it is so cool when someone else has the same symptoms so I can then tell people it is not just me.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
I'm SO PSYCHED! So you already have a fibro board in the works! AWESOME!
When you win the big lottery jackpot...you'll fly us all to your town so we can get together!!!! And of course but yourself a new purse
I'm SO GLAD your tummy is doing better. Naughty b/f...leaving oreos around. Tsk tsk!!!!
*hugs* Thanks for the response Nelly!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Re: Nelly
#151340 - 02/17/05 02:16 PM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
*tears* It feels so good to have somebody understand! I've felt to dumb all these years checking the yes boxes on those doctor forms, and my mother reading over my shoulder saying He's going to think you're a hypocondirac! (!!!)
I've had all these symptoms for as long as I can remember. We used to go for walks when I was in school and as far back as kindergarten I remember being the last person in the way back, in tears saying this hurts! I was always called lazy and unmotivated, though I just was in PAIN and TIRED all the time!
My knees hurt all the time too. I would rub at them while in class in high school and they are always so very cold. Cold and in pain. I can't seem to warm up! I had space heaters in my office too and people would come in and tell me it was like a sauna in there, and I was just getting comfortable!!
I am angry no one ever mentioned it to me growing up. I get angry just thinking about it, not being believed, being called names by my parents like "lazy girl" and "hypochondriac." Grrr. I can't think about it without raising my blood pressure!! *sigh!*
Fibro. Can you believe it? Finally.
It's so cool I can talk about this to you. It's just such a relief that suddenly I'm not crazy.
~nelly~ Sorry for the ramble...!
Print
Remind Me
Notify Moderator
|
Re: Amitryptaline
#151344 - 02/17/05 02:23 PM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
You are beautiful, caring, helpful, smart, friendly, empathetic, and a wonderful friend!!!! You are many things, but you are not crazy!!!!!
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
-Migraines/chronic headaches
-Sore throat
-Itchies (sometimes Ig et welts and can't figure out why! It's not an allergy prob--been tested 3 times! Doc says it's fibro)
-Sinus infection sympoms (from my migraines)
-I catch every virus that comes my way
-Ringing in ears
-Joint pain
-Bleed/bruise easily
-IBS (duh)
-Fatigue in a BIG way. I too can't walk/stand for long before I get VERY out of it and exhausted
-Problems staying asleep and achieving restful sleep
-Brain fog! I always thought it was ADD...but it's the frog! I lose my words mid sentence, just like you Nelly, can't recall what a word means sometimes...it's rough!
-Green mucous (it's NOT an infection...just something I have a LOT!)
-Post nasal drip
-Depression/anxiety (when I can't get out of bed cause I'm in too much pain/too tired...I get very depressed!)
-Pain that migrates from place to place
-Feeling like I have the flu when I'm "fine"
-These crawly feelings (don't know how else to describe it) up my legs
-Sensativity to smell, sound, and light (still miss my scented candles!)
-Sugar makes me sick (I have read this is a fibro thing...but I'm not sure where or how accurate it is)
-I'm always cold (sometimes I do get flashes of hot to cold and back again)
-Mouth sores
I could go on..... 
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
I was "LAZY" and hypoch. too! I have horrible self esteem! *sigh*
I can relate very much to what you are both saying...
It is NOT our faults! Finally we know that!
I remember being told by my PE teacher that I was so slow if a dog ever ran after me it would eat me (I was 6 years old or so). I was TERRIFIED! I felt like the biggest loser!
I have always been cold. I grew up in Miami and wore sweaters everywhere. How do you manage in MD Nelly? I give you a LOT of credit!
I'm starting to feel very sentoimental....that we should all meet....
Here's a symptom where I'm probably all on my own. I often eat to stay awake. Does anyone else do this?
Thank you soooo much for starting these posts! What a wonderful, uplifting thing--knowing we're no longer alone or crazy lazy idiots!
I love you guys! *hugs*
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
Nelly, you practically made me cry! I'm holding back my tears. The people on these boards have said kinder and more loving things than anyone else in my life (except for hubby). But it means SO MUCH coming from friends. Thakn you Nelly...this means more than you'll ever know! *hugs*
You're a fantastic friend! I'm glad you're mine
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
The name of a scented candle, or perfume...it just sounds very exotic and calming!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
O. M. G!
#151368 - 02/17/05 02:57 PM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
I can't believe you just said that! I eat to stay awake too! I did it in college when I had to study and I was falling asleep and NOTHING else worked!!! Do you ever eat to stay warm? I do!
~nelly~
Print
Remind Me
Notify Moderator
|
Re: Amitryptaline
#151369 - 02/17/05 02:59 PM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
I'm there for ya, chica!! Don't worry, we're all going to get through this together!!!!!!!
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
Yes! I eat to stay warm too!
This came up because I was eating brown rice pasta with marinara sauce to stay awake as I have chicken in the oven and gefilte fish cooking on the stovetop and I can't fall asleep or else!
I have GOT to stop eating to stay awake...it's SO unhealthy. And I need to lose weight not gain!
Do you still do this Nelly? Any ideas on how to stay awake without eating?
I'm so glad you responded...you make me feel more normal with every post
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
LOL!! Looks like we're going through exactly the same thing!!!! Hm, I'm trying to find an answer for you about the eating to stay awake. Maybe cook something else that will make you have to stand at the stove? Or clean the kitchen, rearranging pots or dishes (something that does not require bending)??
I usually just fall asleep. I've always said I want to figure out a way to eat and sleep at the same time. Usually I'm too tired to eat. I can't tell you how many times I've ordered food and then just fallen asleep ebfore it came. My poor BF has had to answer the door so many times like, I didn't order this...!
The biggest prob is going to occupy yourself somewhere while there's stuff on the stove and you FORGET. Guilty!!
Sorry I don't have the answer, but if I figure it out, I'm going to post it here first!!
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
I was doing caffeine for a while. But then it stopped working.
I'm going to ask at the HFS tonight when I go. Maybe there is a supplement to help me stay awake.
I'm constantly trying to stay awake! I end up eating in order to drive to the grocery store so I can make it there safely! There's got to be a better way!!!!
I ALWAYS forget stuff is on the stove top. I get distracted so easily. Someone e-mailed me and I was going to e-mail them back. But I had to use the loo. While I was in there I thought about what I was going to write back. When I got out...I totaly forgot and never e-mailed the person back At least I know I'm not a ditz...I have fibro fog! LOL
I always felt I was different. And like I was missing pieces of life. That so many things just went over my head. Now I'm starting to see...it was all true! But there are also parts of life I see that many people don't get to...so I'm lucky
Thanks for your positive attitude Nelly...it's contageous! *hugs*
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
Tissy I could have wrote your dang post! Well this is something to think about!!! I have the sleep issue BIG TIME and the hit by a truck feeling all the time anymore. I don't have a problem walking, but I can't just stand for long periods becuase I feel like I am just going to drop!
I have had a headache almost everyday for two months. Excedrin Tension pills are never far from reach. BLlAAAAA
I am probbably just overreacting. I don't know! It has been in the back of my mind for awhile! But I don't have realy bad joint pain like I thought you had to have. WEll My hip hurts and my neck and shoulders hurt alot of the time, but not my knees or ankles or any of those kind of joints!
What do you guys think?
--------------------
Heather7476
Print
Remind Me
Notify Moderator
|
|
|
I have been called lazy most of my life!!! I am just so tired all the time!! I mean I feel like there is something in my brain dragging my eyes down! Like I am in some daze! I want to do alot of things but the energy is hardley ever there. Then like yesterday I got this huge burst of energy did a ton of things and then felt like crap! I had to drag myself through today and NOW I can't sleep!!! My Neck between my shoulder blades is killing me!!! My hip feels like someone is driving a nail through it!
Sorry to be busting in on this guys! Hope you don't mind!
YIKESA!!!!!!
--------------------
Heather7476
Print
Remind Me
Notify Moderator
|
|
|
I would def get it checked out. Go to a rheumy or a pain specialist.
I would also check out www.fibrohugs.com
I think they have a section that differentiates between chronic fatigue and fibro. If not, get back to me and I'll find out where I saw it.
How long have you had these symptoms? Do you have constant pain in the places you mentioned? I wouldn't rule fibro out....the most import. thing is when the doc touches certain spots it will feel tender if you have fibro.
How long have you the fatigue?
*hugs* I hope you don't have EITHER of these dreaded diseases! But if you do...you've got a great group of friends to help you out!
Love ya! Ruchie
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
So I went to WF tonight. They recommended Ginseng 1st choice. When I mentioned I couldn't have it cause it interacts with my meds....the woman there (GREAT gal...spent a whole hour with me the last time I saw her there!) suggested taking a Vitmain B Complex. She also suggested Doc. Pellegrino's (sp) product: Fatigue to Fantastic! Yep! He has his own product out there. He even has his own Vitamin B Complex. I am planning to check it out and make sure I can take the B supplement with the other supplements/meds and take and then I'm headed back to WF to buy it!
Has anyone else heard anything for fatigue?
I also got a detox tea...it is the most delicious tea I've ever had! (I'm a tea-a-holic!) It has milk thistle, green tea (decaf) chicory root, dandelion root, and a few other ingredients (what you want me to get up and look...ok, fine!) Oh, right, it has red cloves and Brudock root. It's YUMMY! Better than chocolate
Okie dokie...off to bed (it's about time...it's 11 here!) *sigh* When hubby works late I forget what tiem it i....
Night night!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Re: Well DANG!!!
#151541 - 02/18/05 06:35 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
Research it on the web! Here's a site that explains symptoms: http://www.fibromyalgia-symptoms.org/
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
I don't think there are many of these kind of doctors. I'm fortunate I live in a city that has pretty good medical care.
This doctor is right down the road from my house----I could walk to his office, if I needed to! And there is a 2nd phsyiatrist in the office too! He is in a spine center with orthoapedic surgeons, if that helps you. Maybe you could call an ortho clinic and see if they know of one.
Print
Remind Me
Notify Moderator
|
|
|
I think you should get checked out by a doctor. The pain tends to migrate around the body most days for me anyway. So you may not feel like all your joints ache. I do have a mild achiness that is always there but nothing I would even take notice if I didn't know about Fibro. I do however get frequent headaches that won't go away, and a pulled muscle kinda of feeling that migrates around my body. Like one day it feels like I pulled the muscle btwn my shoulder blades, then another day it will be a knee, or butt muscle, etc. But mostly my shoulder and neck muscle bother the most. I can't wear things w/ a big collar b/c it feels like a ton of bricks is hanging on my neck and it ends up giving me a tension headache or migraine.
Go to your doc and let us know what happens.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
I almost forgot about those symptoms. I also bruise extremely easy, ringing in ears, flashes from cold to hot and back again, and mouth sores.
Wow it is so great to able to identify w/ someone else with all these weird things that happen to us from Fibro.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
I'm too tired and achey to list them all! But I get dry eyes (from meds) and a runny nose!
I think I have pretty much all the Fibro symptoms at some point.
Print
Remind Me
Notify Moderator
|
OMG!!
#151580 - 02/18/05 09:17 AM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
Nelly I can't wait to meet you in person. I swear you are just like me! I never wanted to participate in gym class b/c it made extremely exhausted and light headed like I was going to fall out and then I hurt afterwards. My family, especially my mom, always told me I was lazy and a hypocondirac. And my mom still does she says it is all in my head!!
Quote:
I had space heaters in my office too and people would come in and tell me it was like a sauna in there, and I was just getting comfortable!
Oh I just about cried at that one! I used to share an office w/ 2 other girls at my old job and I would run the space heater with my sweater or jacket on and sweat them outta the office. I however was perfectly comfy, except my feet could never seem to get warm.
And I to have doen my share of box checking and yet no doc ever addressed the issues that I had checked so i figured all this time if they didn't say anything then all those symptoms were okay to have and nothing serious was wrong with me.
We are definitely not crazy!! We are just Fibromites.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
Oh girl you definitel sound like me right before I got diagnosed. I really think you should talk to your doc.
I hope I am wrong, but it seems like you may have to join the club.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
when I am at my desk and trying to stay awake I munch on stuff. Very bad habit I know!!!
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
OK Ladies
#151585 - 02/18/05 09:23 AM
|
|
|
|
|
heather7476
Reged: 08/09/04
Posts: 2996
Loc: South East Michigan
|
|
|
I am going to call the doc mon monday and try to get in thrusday or friday! I am tired of being tired! I was thinking my Ad might be causing this but Rich remined me that I was like this before ssooooo I am going to get it checked out!!! Can I just DANG IT!!!!!!!!!
--------------------
Heather7476
Print
Remind Me
Notify Moderator
|
I burn stuff
#151588 - 02/18/05 09:27 AM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
constantly. It is a running joke at my house that I can't cook something in the oven and something on the stovetop at the same time. B/C the thing in the oven will inevitably burn b/c I forget I put in there while tending to what is on the stovetop until I smell it burning. And then I am usually like "What's that burning smell?" and hubby will start laughing and say "dinner". Maybe this is why I like stuff burnt b/c I have eaten so many burnt dinners??
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
At least if you do get diagnosed, you'll have somewhere to work from! There is a wide range of stuff available to help sleep (especially if your doc will prescribe it )...Jen started doing LOADS better after she got AMbien...so there is hope!
Print
Remind Me
Notify Moderator
|
|
|
Hey Chrissy,
Just wanted to jump in here, and one thing that I've found that's helped me with mouth sores (I used to get them all the time) was I got a toothpaste that didn't have SLS (a detergent) in it. Unfortunately the only toothpaste I've foudn without SLS in it was Burt's Bees natural toothpaste. It doesn't have flouride in it, but I think as long as you don't drink exclusively bottled water you're fine. The taste takes getting used to, as does not having the toothpaste foam in your mouth, but I haven't had a single mouth sore since, and that was three months ago! I found it at Whole Foods, but other places that carry Burt's Bees stuff may have it. Here's the link to the toothpaste: Lavender Mint flavor and Cinna Mint flavor
I don't know if it'll help you as well, but it may be worth a shot.
--------------------
Melissa
Friendship is thicker than blood. ~Rent
Print
Remind Me
Notify Moderator
|
|
|
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
I use biotene! Ever heard of it? I buy it at the pharmacy/drug store! My dentist recommended it.
Melissa...I'm glad the Burt's toothpaste helps your mouth sores! Maybe I'll try it when I run out of the other stuff...just for a change (or maybe I'll stick with what works...we'll see!)
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
"And I to have doen my share of box checking and yet no doc ever addressed the issues that I had checked so i figured all this time if they didn't say anything then all those symptoms were okay to have and nothing serious was wrong with me."
(Still don't know how to do the quote box ) I missed htis in your post Nelly! I have the SAME THING! In fact...at one point...I asked a doc about my symptoms specifically and asked if they thought it was fibro..and they said no. It didn't sound like fatigue and pain were my symptoms. Not too bright this man!!!!!!!!!
We are just all so alike...us fibromites gotta stick together. So we can remind each other just jow NORMAL we are....as fibromites!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
And you have us for support...ALWAYS!
And if you dont' do well with meds you can try herbal stuff (so you have choices!)
I hope you DON'T join us....but if you do....you know you're loved and will be well taken care of here *hugs*
Keep us posted, ok? We're rooting for you that things should just turn out for the best and you should feel GOOD!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
Ok! I feel so validated! Just knowing I'm not alone and that there are others like me makes me feel so much better!
I'm so glad we're all so opne!
Thank you soooo much! You made my day
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
and lose things! Yep. I'm a ditz! I always thought I was! Now I know it's just fibro!!! I'm beginning to question if my ADD diagnosis was incorrect?!?!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
Just wondering if you guys get all the symptoms all at once? And if you've had them your whole life? I get a lot of these symptoms. I'm tired ALL the time but when I try and sleep at night I just can't and when I do I have crazy dreams and toss and turn and never feel like I've actually slept, I kick DH in my sleep constantly, he says it's like sleeping next to a karate expert, I get this pain near my shoulder blade that runs round to my chest that feels like a pulled muscle all the time only I've never lifted anything heavy to have pulled it, I get "bruises" on my arms and legs that when you touch that area it feels like a big bruise only there's no bruise to be seen, I'm always frozen, I wear bed socks in 35 degree celcius heat and have the heater on at the first sign of cold, I'm always snuffly like I have hay fever only I don't, I ache constantly from the kidney's down to my ankles, it's like my bones are aching and a few other things that have slipped my mind for now. Does it sound possible that maybe this could be wrong? I've always had a feeling that it's not just IBS that's wrong with me. Hope you don't mind me gate crashing your conversation and I'd like to wish you good luck Heather!
--------------------
Amy
Print
Remind Me
Notify Moderator
|
Tissy!
#151764 - 02/18/05 03:14 PM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
You are right! We are so alike! I can't believe you did the same thing with your space heater!! I had an old one and people told me whenever it clicked on it sounded like an airplane landing!!
My feet are freezing right now!!!
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
Get checked out!! These symptoms may seem random to you, but they all may be connected!!
Right now at this moment, I have zapping back pains, a throatache and stuffed up nose, my feet and hands and knees are freezing, and my legs keep bobbing up and down. I'm also dead tired, and that's just me sitting here at my desk. The last couple days have been hard, but earlier in the week I was up and about, thinking clearly. Comes and goes in a short cycle.
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
I say get it checked out by a doc. *sigh* I have to sya I'm glad you started this post Tissy.....it seems like there's people out there that needed it...I just wish it weren't so!
Amy...let me know if you need anything! *hugs* It def. sounds like it's a real possibility it's fibro! I hope not! That frog is becoming wayyyy to popular!
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
|
|
... I do. I can spike a fever like THAT *snap*! Then I'll go back down to normal, even down to shivering.
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
--------------------
<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
Print
Remind Me
Notify Moderator
|
|
|
nelly that sounds like me if you take away the bobbing legs. I ALWAYS have a sore throat and achey legs. P and I have an ongoing joke about how cold my hands and feet always are....going to move slowly away from this forum as I don't feel bad enough for fibro but I tend to get a touch of the "conditions I might possibly have" if I read too much about them.
Like the time I was 20 and so convinced I was pregnant, I think that worrying about it was what made my boobs sore and nauseous in the morning..until my period eventually came...My imagination really should get paid overtime!
--------------------
S.
Print
Remind Me
Notify Moderator
|
|
|
Sorry, just saw this! It's a natural sedative.
Here:
http://ods.od.nih.gov/factsheets/Valerian.asp
Print
Remind Me
Notify Moderator
|
Nelly
#151803 - 02/18/05 05:03 PM
|
|
|
|
|
|
Do you have fibro Nelly? I haven't had a chance to read this whole thread.
Print
Remind Me
Notify Moderator
|
Re: Nelly
#151807 - 02/18/05 05:11 PM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
Officially, yes.
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
I don't want to self diagnose. I've had these things for years. Combined with never being able to keep track of anything! I drive my family nuts with "where did I put my wallet" "where are the car keys, oh they're on the hook, oh that's where they ALWAYS are?" I forget appointments, birthday parties, school event and if I didn't put my bills on automatic payment I get letters from debt collectors. I have the money to pay, I just forgot I owed money on that bill. The aching drives me crazy the most. 24 hours a day, 7 days a week and I originally thought it was from the cold in winter but I get it all summer too. Not even hot showers and baths help. And I used to love to "shop till I dropped", now I drop in 1/2 an hour with aching pelvis, legs and back. I just assumed it was "me" and that some of it was connected to motherhood but I've had a lot of it since I was a teenager. Thanks for the info guys. I might ask my doctor about it.
Oh and one more thing. I don't "move" or "bob" my legs but I feel like I have to stretch them out every couple of seconds cause they feel "funny". Is this kinda the same thing?
--------------------
Amy
Edited by doubletrouble (02/18/05 05:24 PM)
Print
Remind Me
Notify Moderator
|
|
|
Isn't it weird that it all might be connected?? Read up on it and let me know what you think! This isn't a sudden occurance for me because I've felt this way all my life. A diagnosis was just an "Oh! So I wasn't nuts!" But now I'm looking to be treated for the pain and especially the memory thing. So I'm really hopeful for the future.
I make sure to tell my mom too that she was making fun of a sick girl who could not defend herself when she called me "lazy." Maybe I'll make a list of everybody since age 6 who I've been mad at, and call them up one by one...
~nelly~ Hello... Information...?
Print
Remind Me
Notify Moderator
|
|
|
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
but yeah you might want to get evaluated too. It could be chronic fatigues syndrome or something else so you should tell your doc about all your symptoms. And go to fibrohugs.com and look at the tender points chart. Most docs diagnose fibro by testing to see if you have 11 out of 18 tender points. But I have read lately that even if you don't have all the required tender points but do have overwhelming fatigue and migraiting pain all over your body then they usually diagnose Fibro.
Good Luck and try to find a doc who knows something about the condition and is willing to listen to your needs as well. I found a doc who is like a text book of knowledge on Fibro but not real good at listening to my wants and needs.
Good Luck,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
Who knew??
#151819 - 02/18/05 06:17 PM
|
|
|
|
|
Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
|
|
|
Thanks Ruchie. But I just started this post to respond to Nelly about getting a Fibro/IBS support group started in our area and then it just snow balled from there! huh! But I guess someone knew that this thread would do good. I am glad if helps anyone who is suffering from the pain of Fibro to get motivated to go to their doc and get diagnosed.
Good Luck Ladies,
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
Get checked!! I used to think the same as you I could do all these things before the kids and now I seem so tired. But I always had alot f the symptoms but the tiredness and sleeplessness increased after kids. My doc told me that the Fibro peaks at a certain point I thin btwn. 30-35 not sure but he also said stress exacurbates it brings it to the front.
I can't sit in one position to long or my legs fall asleep and I do do the leg bobbing thing, but it seems you are stretching every few seconds is a form of not being able to keep your legs still.
I am in agreement w/ don't self diagnose thing and think you should make an appt. w/ a doctor. I hope for the best that the frog hasn't gotten you too.
Christie
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
--------------------
Christie
~Hoping and Praying for Sleep!~
Print
Remind Me
Notify Moderator
|
|
|
What the heck is with all these IBS people getting fibro??? It makes me so angry!
When did this happen, Nelly? Did you suspect that you had it? I'm so sorry to hear that. Big hugs to you. But you're strong and that will come in handy.
Is there a link between IBS and fibro?
Big hugs to you!
Print
Remind Me
Notify Moderator
|
|
|
I am no expert but those symptoms do seem to fit with fibro. If you do find out that you have it then you'll be able to start your treatement and hopefully improve.
Gosh, I wonder how many people with IBS also have fibro?
You're tough as nails and have the bext attitude and sense of humour. You'll beat this fibro and kick it's butt.
Big GENTLE hugs though!
Print
Remind Me
Notify Moderator
|
Re: Nelly
#151882 - 02/19/05 07:07 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
I've had this for at least as long as I've had IBS, if not longer. It's so weird that now I have a name for it! The doc said that the #1 symptom of fibro was IBS.
~nelly~
Print
Remind Me
Notify Moderator
|
Tina!
#151883 - 02/19/05 07:11 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
You're such a good friend, Tina! You always know what to say! I appreciate the encouragement, girlfriend!!
I'm really looking forward to getting some treatment for some of these symptoms!!! The diagnosis is a GOOD thing for me, because without it I'd just think I had all these random ailments and buy into being a hypochondriac or just LAZY! And to think I've built my schedule around my slacker life all these years, when it turns out I don't HAVE to be suck a slackstress!!
Not that I don't LIKE slacking off, mind you...!
~nelly~
Print
Remind Me
Notify Moderator
|
IBS & Fibro
#151886 - 02/19/05 07:39 AM
|
|
|
|
|
Linz
Reged: 09/01/03
Posts: 8242
Loc: England
|
|
|
Pretty much everyone with Fibro either has IBS or will develop IBS...the problems with neurotransmitters and pain-amplification that are typical of the digestive system with IBS are all over the body with Fibro...that's why it's nickname is Irritable Body Syndrome!
Print
Remind Me
Notify Moderator
|
|
|
Glad you're handling this well Nelly.
Print
Remind Me
Notify Moderator
|
Linz
#151892 - 02/19/05 08:03 AM
|
|
|
|
|
|
Do you know how many people with IBS develop fibro? Just curious.
Print
Remind Me
Notify Moderator
|
Nelly!
#151893 - 02/19/05 08:07 AM
|
|
|
|
|
|
You definitely have my support Nelly. And by know you should know that I consider you a friend!
You're not lazy at all! I know that well. Because of my insomnia, some days I don't have a lot of energy and have been called lazy before. I'm not lazy just tired and perfectly happy staying in sometimes.
I think it's such a great thing that you'll be working from home in your new job. That will help you keep things at your own pace.
I agree that the diagnosis is a good thing. Now you know you aren't crazy and can get your doctor to work with you on this.
YAY!!!!!!
I'm a huge slacker and proud!
Print
Remind Me
Notify Moderator
|
Tina
#151894 - 02/19/05 08:10 AM
|
|
|
|
|
Linz
Reged: 09/01/03
Posts: 8242
Loc: England
|
|
|
No, but it's not people with IBS developing Fibro...it's people with IBS being diagnosed with Fibro...which was there, even if not a problem, before the IBS.
With me, I've had Fibro symptoms on and off since my early teens if not before. However, it was only when I got IBS and it got bad that the Fibro kicked in properly. It's like a vicious cycle...you have Fibro (or at least the Fibro genetic make-up) and that means you're more likely to develop IBS and if you do it makes it more likely that the Fibro will become a problem. SOme people (my Mum for example) probably have Fibro, but because they never developed IBS, or had a car accident or whatever, the Fibro never gets so bad to become a real issue.
Plus, these days, it's quite easy to get an IBS diagnosis whereas a Fibro diagnosis is more complex.
Print
Remind Me
Notify Moderator
|
IBS & Fibro News
#151910 - 02/19/05 09:45 AM
|
|
|
|
|
Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
|
|
|
I started work on my new site! I bought the domain a couple days ago and coincidently to Linz's post it's called IBSandFibro.com.
I'll be working over the next month to set up the forums and post my text, as well as set up a color scheme. Just wanted to let you guys know this was in the works!
~nelly~
Print
Remind Me
Notify Moderator
|
Posts
