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official diagnosis obtained....
#66046 - 04/29/04 04:11 PM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

fibromyalgia.

don't know how i feel about that yet, but i thought i'd let you know.

(and i thought life sucked when "all" i had was IBS...)

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Re: official diagnosis obtained.... new

#66053 - 04/29/04 04:26 PM

Shell Marr

Reged: 08/04/03
Posts: 14959
Loc: Seattle, WA USA

Oh Jen...... I'm so sorry!! {{BIG HUGS}}

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www.myspace.com/shellmarr

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Hey Jen new

#66060 - 04/29/04 04:38 PM

peaches

Reged: 09/28/03
Posts: 1183
Loc: Fort Wayne, Indiana

Hey I just looked up some info about it since it's been talked about quite a bit, so I think I'm up to date quite a bit. This site is what really helped me:

Fibromylagia

Anyways, I'll be praying for you to get better! Have you started any treatments yet?

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It comes down to the art of living on [color/red]

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Re: Hey Jen new

#66064 - 04/29/04 04:45 PM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

thanks! i'm going to check that link in a few, after i am done making my rounds here.

right now, the only "treatment" i have been given is a few prescriptions. one that i started 2 weeks ago to help me sleep more deeply, and now today a new one for pain. i'm to go back to the doc in a month to be checked again. i want that time to do some more reading so i know more about it and what to expect. i'll demand some more/better treatments then after i've "reviewed."

see how much faith i have in Doctors?

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Fibro

#66073 - 04/29/04 05:00 PM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Well, that sucks Jen, but at least you know. When my life has calmed down a bit I'm going to get a referral to a rheumatologist too. Take it easy girlfriend. We've got to not make life hard for ourselves!

What are you on for the pain? I could with some of that atm. Sitting at a desk all day (or night) is the worst thing for my joints, don't know abut you. I wonder if acupuncture can really help???

Peaches... thanks for that link, it's got some really good info.

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Re: Hey Jen new

#66074 - 04/29/04 05:00 PM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

I'm so sorry..........and I can well imagine you have mixed emotions about it.

Have you looked into T-3 (?) a thyroid med I keep seeing being used for Fibro and CFS.

I'm going thru subacute thyroiditis right now and it is pure H*. Will take time to get over but in the mean time I have fibro symptoms plus a whole lot of other scary things I hate to think about.

I wish you well working with your doc. You're smart so you'll get a handle on what is best for you I'm sure.

Set those docs straight..........they need it!!!!

Kandee

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Kandee new

#66076 - 04/29/04 05:02 PM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

What do you know about the thyroid meds and Fibro? I've seen this mentioned in loads of places but with no details

. Any info would be gratefully received! My thyroid's certainly not happy, but the function test came back okay.

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Re: Hey Jen new

#66079 - 04/29/04 05:04 PM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

Thanks, Kandee....

actually, i have an article about T3 meds in my little medical folder. that's one of the things i'm going to bring up at my next appointment. this is a new doc, so i wanted to just follow instructions the first visit so i look compliant, then i'll wreak havoc at the 2nd visit.

they always greatly underestimate me. their mistake!

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Re: Hey Jen new

#66084 - 04/29/04 05:14 PM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Do you get bugs much? I got totally mashed (I like this word - its descriptive!

) last fall when what I know now as Fibro went mental cos I kept on getting bugs and being wiped out for weeks at a time with each one.

Now I take Echinacea and 500mg Vitamin C a day and it really helps. I'd recommend the Echinacea even if you can't stomach the Vit C. Just a thought.

I'm gonna go away now cos my joints are seizing up and I have 5 more hours of work typing to do!

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Re: Hey Jen new

#66086 - 04/29/04 05:19 PM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

actually, it's funny. i was just saying to a friend how amazing it is that aside from my IBS and the fibro stuff, i haven't been sick in over a year and a half. no stomach virus, no colds, no flu. (*knock on wood!*)

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Re: official diagnosis obtained.... new

#66087 - 04/29/04 05:20 PM

*Melissa*

Reged: 02/22/03
Posts: 4508
Loc: ;

Hey Jen - I'm glad you finally got a diagnosis - but I'm sorry that's what it was.

I never really knew exactly what it was. I just looked on Peaches website (thanks Peaches) to find out some info.

I hope you find something that can help you out.

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Re: official diagnosis obtained.... new

#66088 - 04/29/04 05:25 PM

Vicam

Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada

Aw Jen, sorry to hear about that

At least you have an actual diagnosis though, so that you can go ahead and start treating things properly

Hope you feel better soon! I'll be thinking about you.

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Re: official diagnosis obtained.... new

#66090 - 04/29/04 05:30 PM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Aw, Jen, welcome to the club. Not fun at all, but what can we do. When I was diagnosed, it was actually kind of relief, as it validated my symptoms and explained a lot about my life.

The FMNet site is one of the best. I subscribe to their newsletter which is excellent, especially on new research on meds and stuff. There truthfully isn't a lot that doctors can do, so don't be too frustrated if they can't "fix it" immediately. The two main things are exactly what you've been started on, correcting the sleep problem and treating the pain.

FYI, I'm on Elavil and OTC benadryl for sleep and for the pain, I take generic Tylenol and Ultram, a non-narcotic prescription pain killer. That keeps me pretty stable, except when I overdo it or have a crisis like my poor kitty dying last weekend.

The good news is it's not progressive and it's not fatal. It just a pain in the neck...and the back...and the legs...and the arms... and the feet...and the hands....and the head...and the neck. Oh, I said that already. Oh yeah then there's the fibro fog. The other day I put the bread in the refrigerator rather than the breadbox. Two days before that I put the cat's container of food with the plastic lid on it carefully down on the floor where her dish goes, rather than in the refrigerator. So you might want to dye your hair blond, so you can say you're having a "blond moment." (No offense to all you pretty ladies on the board, it just sounds a lot sexier than a "senior moment.")

Seriously, Jen, I'm so sorry to hear you've got it, too. But hang in there. Throw a great big pity party for yourself, then gradually move on.

I wish I could give you a great big (((((((((((((((((HUG)))))))))))))) right now.

Love ya.

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Laura
Keep it simple!

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if i may.... new

#66093 - 04/29/04 05:37 PM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

some fibro and CFS experts think that their patients have trouble using T3. they make enough of it, so the test results are normal or even a little low-normal. but it's not really being used correctly by the body. by treating the patients with a T3 supplement, the body has even more T3 to use and some patients start to feel better. i have a lot of hypothyroid symptoms, so i'm definitely interested.

(if i botched that description, i'm sure LS or Kandee will correct me. i'm wiped out.

)

i'm also interested in B12 supplements. there's another theory that CFS and fibro patients are able to metabolize B12 in their bodies but not in their brains and that's part of the cause of the fatigue and fibrofog and other neurological symptoms.

g'nite. it's best i log off now... i'm starting to ramble.

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Must be all those morning smoothies you have! - nt new

#66108 - 04/29/04 06:02 PM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

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Fibro! new

#66111 - 04/29/04 06:22 PM

Bevvy

Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State

Fibro! Well, you and LS have a lot in common then....

Fibro! Jen, how do you feel about that? And how did he confirm it? What about the IBS? Do you have both then?

Fibro! Wow.... well, we're here for ya, Jen. I was wondering why we hadn't heard from you today..... I had a feeling in my gut something was wrong.

Fibro! Are you a little relieved, at least, to finally have a diagnosis? Now you know what it is and you can get meds -- can't you? I know my Canadian friend was on meds for his fibro.

Fibro.... is he sure? What now? What's he gonna put you on?

Jen, are you okay? I know what will cheer you up. Where's our Canadian fly boy?

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Laura Sue, You're THE BEST! new

#66113 - 04/29/04 06:26 PM

Bevvy

Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State

I love your attitude. Girlfriend, you're a champion. You really are, you know that? Don't ever lose your marvelous sense of humor.

I hope we can help our Miss Jen. If anyone can, it's you.

Bev

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Jen...my angel!!!!!!!! new

#66142 - 04/29/04 08:02 PM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

Jen,
You know what. It's almost eight oclock at night where i live right now which means i think that it is almost eleven pm where you live, so I hope you are sleeping like an angel right now. I'm sorry for you but you are my hero, OK? I'm sorry you have to deal with being sick and tired of being sick and tired (and in pain). When you lay your head down on the pillow every night (or afternoon..or heck..every second

) just know that you are admired because through all this you are still so kind and manage to lift my and everyone else's spirits every day. I don't know how you do it. Well...you're an angel..that's how!!!!!!!! Sleep tight..don't let the bed bugs bite!
Hugs nHugs nHugsnHugsnHugs...and after a good meal with soluble fiber, a hershey's kiss

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If you live life to love, you'll love to live life.

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Re: official diagnosis obtained.... new

#66146 - 04/29/04 08:14 PM

barberm10

Reged: 04/12/04
Posts: 12
Loc: Florida

PMA is a good thing to have and just stay motivated!
My Aunt has Fibromyalgia and as my IBS-D symptoms have gotten worse, I have wondered if I shouldn't be tested for it too since it is in my family...I said a little prayer for you!

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OH, Jen new

#66153 - 04/29/04 08:47 PM

StephS

Reged: 09/11/03
Posts: 2123

Jen,

I hope your getting some good sleep right now...so by the time you read this you will feel rested!

I'm sure pullin for ya over here!!! I hope now that you know what you have you can get better...or some what better! Now do you just have fibro or CFS too??

Take it easy and now that we all love you!

I'm really sorry you have to go through all of this!

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Jen is right about T3 plus.......... new

#66156 - 04/29/04 08:52 PM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

the feeling better by being on it has a lot to do with helping the body produce your own seretonin. (Here we go again with that "feel good" stuff that we need for our gut as well). There is a huge lap over with thyroid patients that have fibro too, and fibro patients that have undiagnosed thyroid problems.......well, not problems that you see in blood test but none the less the symptoms like Jen says she has. As you know the biggest risk factor for getting an autoimmune disease is to already have one.....
If you start doing a search on T-3 you'll see where it used in both types of patients. My thyroid meds already contain T-3 and T-4 so I don't have to worry about the body converting T-4 into some T-3. However, with my antibodies so terribly elevated all the test results don't apply and show up as false readings.

Synthetic T-3 can be tricky stuff so it needs to be monitored by a GOOD lab consistantly. If you got to much you'd get hyperthyroid symptoms. Those are much worse, not to mention dangerous, than hypo ones.

The brain fog is common with both fibro and hypothyroidism, but I'd say you and Linz and LS are doing pretty darn good. My mental functioning ability right now is about 1/2 of what it normally is. Maybe part of it is age related though too.

As to the B-12 I understand if you take it via shots and not supplements your body will use all of it. With supplements only a small percentage gets absorbed. I've read there are fibro patients that swear by weekly B-12 shots.

Good luck to all of you fibro/CFS ladies. It is rougher stuff to go thru than anyone can imagine and my heart goes out to you.

Kandee

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Re: official diagnosis obtained.... new

#66172 - 04/30/04 05:08 AM

crc

Reged: 03/01/04
Posts: 161
Loc: Maine

Jen,

I am bummed to hear that. I guess sometimes IBS and Fibro go together, oh joy! You are a wonderful person and your strengths will get you thru this. All's I can think of is that Sheryl Crow song about soaking up the sun, so I'm sending you that. Oh also,ask your Doc about omega 3 fatty acid supplements. I heard that they are sometimes helpful with fibro and IBS.

Take care and soak up some sun,

Cindy

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tarabara: stop making me cry every time you post, please! new

#66186 - 04/30/04 05:45 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

thanks, sweets. i appreciate it. you're the best!

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yeah, IBS is a big ole fibro symptom. how fun! LOL -nt- new

#66187 - 04/30/04 05:47 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

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B12

#66188 - 04/30/04 05:55 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

actually, Kandee, i fully intend to push for the B12 (even harder than i do for the T3). why? because pernicious anemia runs in my family. both my grandmother and her sister have it, and they both got it in their early 30s. (Hullo! i'm 33!) what pernicious anemia means is this: the body doesn't make enough of what's called "intrinsic factor" (made in the stomach. hullo!?) and therefore cannot metabolize most of the B12 that is taken into the body. so by giving B12 shots, the vitamin goes right into the bloodstream and is more readily used by the body.

the theory goes that fibro and CFS patients are unable to use the B12 in their brains.

so, coincidence? i doubt it. my grandmother and great aunt have both been getting the shots for years. my father asked my g-mother "what did you feel like right before they found the pernicious anemia." her answer: " i was very tired and slept a lot and felt so weak i could barely lift my arms." Hmmmm... now who does that sound like!?

my B12 levels came back fine and i'm not anemic, but i still think i'm on to something here and intend to push for the B12.

thanks for listening to me ramble!

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Re: official diagnosis obtained.... new

#66197 - 04/30/04 06:17 AM

barbie

Reged: 04/22/04
Posts: 2435
Loc: Texas

Hi Jen,

I am fairly new to this message board but I want you to know that I really enjoy reading your posts and a lot of your tips have helped me. I am sooooo sorry to hear about your Fibro. I am not too familiar with it (you can ask me about panic attacks) but I have heard that it is painful. I have always found that checking stuff out on the net always gets a lot of info and advice. Please take care of yourself and hopefully venting on the message board will help..

Barbie

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Re: official diagnosis obtained.... new

#66199 - 04/30/04 06:20 AM

Shirl

Reged: 02/19/04
Posts: 558
Loc: North Carolina

Oh Jen sweetie,
sorry to hear the news. ive read about this so called tie with IBS. i used to clean for a lady who had fibromyalgia and I do know from seeing her and from my medical transcriptionist course some things about it. I shall pray for you sweetie.

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if God brought you to it. He will bring you through it.

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Thanks, all... new

#66202 - 04/30/04 06:23 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

as always, you've cheered me right up! thanks for the kind words. and don't worry, just 'cause i have fibro doesn't mean i dont' have IBS (o joy!), so i'm not going anywhere. you get to put up with me anyway!

how do i feel about this fibro stuff? well, i was tired yesterday so i didn't think about it much. but here's what i'm thinking now: no biggie. well, of course fibro is "a biggie," but i think you know what i mean. "no biggie" meaning: what does it really change? it's not like having my doctor say "you have fibromyalgia" changes anything for me. in fact, it probably makes it better in that now i have a name for it and they can start attacking the problem. (interpretation: i can start researching and telling them what they're going to do to attack the problem!

) knowing it's fibro doesn't give me more pain, or make me more tired. so.... no biggie!

you know what's funny? i've always had pain in all kinds of places. different kinds of pain: achy, stabbing, shooting, cramping, etc... and for years i haven't even bothered going to the doctor because they always tell me "there's nothing wrong." there's nothing wrong? i can't sit in a movie without my knee feeling like someone stabbed it? ah, there's nothing wrong. i have had a "crick" in my neck for 2 1/2 years that nothing fixes? there's nothing wrong. i wear heels one day, and i'm fine. i wear the same shoes 5 days later and there's lightening bolts of pain in my toe and at the bottom of my foot? there's nothing wrong! i have muscle tightness in my hips that never goes away and no kind of stretching seems to help? ah, there's nothing wrong.

so... i just always sucked it up and kept going. which i still will do, but it's nice to know that there is something wrong.

at least i know i'm not nuts or a big baby or a hypochondriac. 'cause after 20 years of hearing there's nothing wrong, you begin to wonder about your own brain! but now i can get scripts for physical therapy and so forth and maybe get some of those things taken care of even though on xray "there's nothing wrong."

so really, i'm not that stressed about the fibro. the one thing i find very frustrating, though, is these periods of brain fog ("fibrofog"). they are terribly frustrating and they really piss me off. i hate being stupid, and to me if you can't think of easy words in a conversation, forget where you put your pants and you bump into things like walls, you could be perceived as stupid! that that symptom may always be there and reoccur periodically really makes me angry. i'm hoping if i can get into a good plan for deep sleep then that won't happen often, but there are no guarantees. so i'm not too terribly upset, just not looking forward to the flares of fibrofog. otherwise, i'm my normal cheerful self!

sadly, i just got my hair color touched up, and it's not blonde. LS, you may be onto something there! but i think i'll stick with the dark brown... it suits me better. (there are some blonde hilites, so that's something at least. since i don't have "severe fibro" then i don't need to be totally blonde!

)

anyway, thanks for the cheer. you all are the best!

SMOOCHES!

OH! BY THE WAY......
not only does this stupid medicine they put me on for sleep give me horrible dry mouth and make me gain weight (!) but it also--- get this! ---- it ALSO makes me constipated. I DON'T GET CONSTIPATED. this is just wrong..... ARGH!!!!!

LOL

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Re: Thanks, all... new

#66207 - 04/30/04 06:37 AM

barbie

Reged: 04/22/04
Posts: 2435
Loc: Texas

Hi Jen,

Don't feel alone about fuzzy brain. I am 59yrs old and have to write notes to myself so I don't forget stuff...old age, I guess. What sleeping med or you on? I take an over the counter pill that has benedryl (anthistamine) and it works great and not addicting. Did you know that there is a toothpaste and mouthwash for dry mouth at drugstore? I think it's called Betodine or something like that.

Barbie

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Re: Thanks, all... new

#66208 - 04/30/04 06:41 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

i'm on nortriptyline, which is a tricyclic antidepressant. the problem with some of the sleep narcotics and over the counter meds, from what i've read, is that they make you sleep but you're not getting deep sleep, which is what i need. (i already sleep all night, i just stay in the light levels)

thanks for the tip. i hope that "betadine" isn't the same betadine i used to use at the veterinary hospital! that was a bright red iodine mixture used as a surgical prep.

UCK.

have a great day!

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Re: Thanks, all... new

#66217 - 04/30/04 07:11 AM

barbie

Reged: 04/22/04
Posts: 2435
Loc: Texas

Hi Jen,

No it's not that yucky iodine stuff. I'm probably just not spelling it right. Ask the pharmacist and he can tell you.

Barbie

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well then, i will never give them up!!! -nt- new

#66235 - 04/30/04 07:50 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

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No, it's BIOTENE and it's great!!! GO BUY SOME NOW!!! RUN DON'T WALK!! -nt- new

#66236 - 04/30/04 07:50 AM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

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Laura
Keep it simple!

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Re: official diagnosis obtained.... new

#66237 - 04/30/04 07:50 AM

michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

So sorry, Jen! Like you said though, at least you KNOW your not going crazy!

Fibro can be difficult, I know, my mom had IBS C, Fibro and Lymes. I see what it does to her. You are strong and have lots of people who care about you! We all love you! You ALWAYS bring a smile to my face!

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Taking it one day at a time.....

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oh my! ok, LS! LOL! -nt- new

#66240 - 04/30/04 07:53 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

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Re: Thanks, all... new

#66245 - 04/30/04 08:03 AM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

That's the spirit, Jennie my girl! You're absolutely right, compared to alot of other things and given that it's not progressive, it IS kinda "no biggie." Yet in other ways it's huge, of course.

I can totally relate to the "it's nothing" routine. On some level, I've known all my life there was something wrong with me that made me different from other people. But every time I'd go for a checkup, I'd pass with flying colors. It didn't make sense to me, but what could I do? So for 50 years I passed for what was normal, not knowing that to have all these little aches and pains and to be so tired all the time or to have meltdowns in noisy public places wasn't normal. That's why I said it's SUCH a relief to finally know that there IS something wrong with me and I HAVEN'T been crazy all these years.

And yes, the fibrofog is infuriating and frustrating. All my life I've been an organized, responsible, smartypants overachiever, with nothing but scorn for people who lost their car keys or bounced checks or trailed this little cloud of chaos after them. Now, I always warn people to be careful what they make fun of, because they might end up with it. Like be careful what you wish for? Because my husband and I are now astonished and bemused because I've turned into one of those ditzes we always made fun of!! How ironic is that?! But you get used to it and discover that it doesn't kill you, and gives you some very funny stories, and you go on.

Wouldn't wish it on anyone, sweetie pie, but know you're not alone, and while it will never go away, it is manageable, like asthma or arthritis. And the best thing is, it doesn't seem to impair one's ability to spend incredible amounts of time on the IBS message board!!!!

Love ya.

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Laura
Keep it simple!

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SILVER LINING! new

#66250 - 04/30/04 08:13 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

Quote:

And the best thing is, it doesn't seem to impair one's ability to spend incredible amounts of time on the IBS message board!!!!

WHEW!

thanks for the helpful post, LS. i will be postive 'cause it's either that or negative and really... what does being negative getcha?

maybe this IS karmic revenge. i used to get really frustrated with people who i thought were "dumb" because of the things you mentioned. i've always admitted that i'm a bigot in NO WAY, but am slightly prejudiced against stupid people. (not people who have problems like retardation or brain damage! i have a cousin with Downs Syndrome and he's smarter than most people in a lot of ways) anyway, here i am, forgetting simple words and needing a nap after i think of them! (IF i think of them!) ah well, i can accept karmic punishment- guess i earned it, no?

yesterday i got my hair trimmed and bought some shampoo and conditioner in one of those huge "bonus deal" packages, and after i paid for the appointment walked right out and left it on the counter with my bottle of water. the stylist ran out the door to hand it to me and almost knocked me over 'cause i was standing in front of the door looking around the parking lot trying to remember where i left the car.

oy.... well, i'll be gathering material for my future as a stand up comedian!

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Jen, You're the Queen! new

#66256 - 04/30/04 08:27 AM

Bevvy

Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State

Girlfriend, I have a great deal of respect for you. I love how you're handling this. It's marvelous that you're keeping your sense of humor; I believe it'll hold you in good stead -- just like LS. What an inspiration for us.

You two ROCK.

Bevvy

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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy

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Re: Thanks, all... new

#66259 - 04/30/04 08:33 AM

tuxedocat

Reged: 02/09/04
Posts: 279
Loc: Ithaca, NY

Jen, so sorry to hear about the fibro diagnosis. At least you know why you feel like you do. I feel for ya! I get tired and stupid enough just with IBS. I can't imagine what you, Linz, and LS go through.
The nortripyline should help with your pain too, actually. I'm on it for chronic tension headaches, though I had to take it for about a year before it was fully effective, but even with grad school I don't get raging headaches that last for weeks. Now I just take some aleve when I feel one coming on and it goes away! As for the dry mouth, Biotene is the greatest thing ever. It won't get rid of it completely, but I manage to teach for an hour and only need one cup of water. The constipation will go away eventually as your body gets used to the meds.
Hang in there

--------------------
--Julie

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silly goose! new

#66262 - 04/30/04 08:41 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

i am doing what anyone would do--- i'm making the best of it. really, i'm lucky because it could be so much more severe! mine is "low-grade" and therefore merely pesky compared to the plights of some people with fibro!

but thanks.

your nice words make me feel good anyway.

--------------------

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Re: Jen, You're the Queen! new

#66263 - 04/30/04 08:41 AM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Dear Bev,

"Aw, shucks, ma'am, twarnt nuthin."

You're the real inspiration around here, Bevrs, IMHO. You're the queen bee that holds this board together!

--------------------
Laura
Keep it simple!

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Re: official diagnosis obtained.... new

#66283 - 04/30/04 08:57 AM

Janey

Reged: 10/25/03
Posts: 1716
Loc: Maryland

Jen,

I am so sorry that you are going through all of this. At least now they know what is wrong and you can start dealing with it positively instead of wondering and worrying.

Hugs,

Janey

--------------------
Janey

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Hi Jen.....{{{{{hugs}}}}} new

#66285 - 04/30/04 09:01 AM

Nugget

Reged: 02/10/03
Posts: 2167

At least you know what it is now and can start to treat it and feel better. You are in my thoughts. {{{{hugs}}}}}

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AMEN! -nt- new

#66295 - 04/30/04 09:22 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

--------------------

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#66385 - 04/30/04 11:35 AM

Bevvy

Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State

Then why am I so emotional this morning? I can't stop crying.

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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy

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de nada -nt- new

#66391 - 04/30/04 11:48 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

--------------------
If you live life to love, you'll love to live life.

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Re: official diagnosis obtained.... new

#66396 - 04/30/04 12:06 PM

gigi

Reged: 03/21/04
Posts: 1442
Loc: South Texas

Jen, it is better to know than not. I am thinking of you, and saying a prayer.

----------------
some people just dont know how to drive, I call these people 'anybody but me'!

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Aw, Bevrs.... new

#66400 - 04/30/04 12:13 PM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Sweetie pie, whatcha crying about?? Don't like the new house? Want candy and can't have it? Somebody died? Those are things to cry about. Anything else is just life.

Now, dry your tears, and here, (holds up hanky) blow your nose (on the hanky please!!!) And make yourself a nice cuppa tea and sit down in your rocking chair for 10 minutes. That's an order. 10 minutes and not a second less. And close your eyes and breath deeply and think about Michael's tapes. And you'll be okay and so will we. Okay?

--------------------
Laura
Keep it simple!

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My ROCKING Chair? new

#66418 - 04/30/04 01:04 PM

Bevvy

Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State

I keep telling ya, it's a RECLINER. Not rocking chair. RECLINER!

And I'm not knitting. I'm doing needlepoint. There's a big difference. Good grief, I'm not THAT old.

Knitting in my rocking chair. Sheesh!

Needlepoint....... Recliner......

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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy

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LOL! My Mistake!! Me Bad!! Fibrofog!! Brain Fart!!! Recliner, Recliner, Recliner!! -nt- new

#66497 - 04/30/04 06:01 PM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

--------------------
Laura
Keep it simple!

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Hey Jen new

#66505 - 04/30/04 07:02 PM

peaches

Reged: 09/28/03
Posts: 1183
Loc: Fort Wayne, Indiana

I admire you for being so optimistic! It's a great way to get through tough or depressing times. Keep it up, girl!!

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It comes down to the art of living on [color/red]

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Re: official diagnosis obtained.... new

#66516 - 04/30/04 09:00 PM

JBI

Reged: 01/25/04
Posts: 579
Loc: BC, Canada

fibromyalgia !?! oh ya, well why don't you go fibro-YOUR-algebra!

Hey Jen, I'm sorry to hear that that's what you have. I don't know too much about it, but it seems as if you're keeping a positive attitude about things. My cousin who's going through medical school has it. It does cause some problems, but she manages to stay really active and do most of the things she loves. Hopefully you'll be able to do the same. Good Luck,
Jamie

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Re: Bev and her Rocking Chair! new

#66534 - 05/01/04 04:22 AM

*Melissa*

Reged: 02/22/03
Posts: 4508
Loc: ;

hehe - sorry Bev, couldn't resist!

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Knitting new

#66536 - 05/01/04 05:54 AM

chinagrl

Reged: 12/18/03
Posts: 2439

Hey Bev,

Knitting is very hip again. Believe or not lots of 20 something women who consider themselves very cool and hip have taken up knitting. It's some sort of nostalgia/ironic/hipster thing...

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good grief new

#66538 - 05/01/04 05:55 AM

chinagrl

Reged: 12/18/03
Posts: 2439

It really seems like people with IBS must be blessed with a variety of other diseases as well. I'm sorry to hear about it... at least having a diagnosis you know and can move forward. Sometimes I think not knowing what's wrong with yourself is way more scary.

What a bummer man.

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Gee, Thanks, Mags! new

#66542 - 05/01/04 06:08 AM

Bevvy

Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State

This doesn't looks anything like me! I don't wear my hair in a bun. So there.

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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy

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Re: Gee, Thanks, Mags! new

#66576 - 05/01/04 09:31 AM

*Melissa*

Reged: 02/22/03
Posts: 4508
Loc: ;

Quote:

This doesn't looks anything like me! I don't wear my hair in a bun. So there.

I know Bev! That's really me, but I was just letting you borrow her!

I like wearing buns in my hair!

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Re: Knitting new

#66578 - 05/01/04 09:34 AM

*Melissa*

Reged: 02/22/03
Posts: 4508
Loc: ;

Quote:

Hey Bev,

Knitting is very hip again. Believe or not lots of 20 something women who consider themselves very cool and hip have taken up knitting. It's some sort of nostalgia/ironic/hipster thing...

Bev does knit. And she's a fabulous teacher too!

She's helped me out bunches - although I've been on break quite a bit lately with too much other stuff going on. I can't wait to get back into it though.

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Re: official diagnosis obtained.... new

#66595 - 05/01/04 11:22 AM

Lilybear

Reged: 04/05/04
Posts: 172
Loc: east coast, usa

Hello jenX,
Congratulations on becoming board moderator!!:) I'm sorry about your diagnosis:( What is fibromyalgia? You are so strong and positive jenX. You will get through this, and my prayers are with you.
*lilybear

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Buns and Mags! new

#66610 - 05/01/04 12:48 PM

Bevvy

Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State

Yeah, you can get away with it and still look like a hot chick.....

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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy

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the upside of IBS as a fibro symptom... new

#66702 - 05/02/04 05:50 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

a bummer, indeed. that's exactly what it is!

actually, IBS is a symptom of fibro. i guess it's funny that i got that diagnosed first, tho, huh!? well, i'll be glad about the IBS part of my fibro, 'cause without it i wouldn't have "met" all of you guys!

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what is fibro.... new

#66703 - 05/02/04 06:03 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

fibromylagia is a lot of things. in addition to being a real pain in the butt, it's also just a real pain. the key symptoms are pain and fatigue. not the "i'm sleepy so i'm going to catch a catnap" kind of fatigue- it's like the worst flu you ever had kind of fatigue.

the pain is probably different for everyone, but it's major stuff. i never think much about it, 'cause i've been in pain for years. the doctors always said "it's nothing." 'cause here's the trick about fibro: people with this syndrome feel pain more strongly than other people. it's not in their heads, 'cause it actually shows up on brain scans! if you and i experience the same stimuli, your brain may show mild responses in the brain, but mine will go nutso! hey--- actually it IS in our heads!

the other kicker is that people with fibro experience certain stimuli as painful but other people don't. so i may hurt from something that doesn't bother you, and that pain i'm experiencing is also amplified from normal! Fun, huh?

much of the time, the pain a fibro person is in can't be palpated or seen, meaning i have a bum knee and it's really bad sometimes. if i go to the doctor, though, they can't find a single thing wrong with it. i know i messed it up in collge but that was [CENSORED] years ago and it certainly shouldn't still hurt! doctors say nothing is wrong, but sometimes it keeps me up at night. what a riot that is!

there's other stuff, too. plenty of it! IBS is a symptom for some. so are migraines. some people are sensitive to chemicals, some to medications. ah, and then there's the fibro fog. a biggie is the cognitive (thinking) symptoms... forgetfulness, confusion, trouble thinking of words. lots of stuff that make some people think they're getting early onset Alzheimers or simply going crazy. some people have a little of that at all times, others get it in "waves."

it's believed by some that this is all a result of a sleep problem (not getting deep enough sleep).

there. more than you wanted to know about fibromyalgia, yet only the tip of the iceburg!

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thanks. i'm always positive. negative is so unattractive! -nt- new

#66704 - 05/02/04 06:04 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

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what's it to ya....? new

#66705 - 05/02/04 06:06 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

i knit and often it's in a rocker.

whatcha got to say about it!?

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Re: what is fibro.... new

#66730 - 05/02/04 08:34 AM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Jen, that is such an excellent summary of the main points about fibro! You've been doin' some readin' haventcha?! I couldn't have said it better myself. Actually, I suspect you of plagarizing one of my earlier posts (kidding)!

BTW, I was also diagnosed with IBS before fibro! By my same sweetheart of a PCP. And I'm not being sarcastic. He really is a sweetie -- really gets it and really cares and has a sense of humor to boot, and hates insurance company insanity as much as we do.

Hope you're having an okay day.

--------------------
Laura
Keep it simple!

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THIS!

#66768 - 05/02/04 11:02 AM

Bevvy

Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State

Whadda I gotta say 'bout it? Just this: you're young and gorgeous. You can pull it off -- like Mags and her bun.

Jen, tell me something. Why hasn't some handsome dude swept you off your feet yet? What's up with that?!

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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy

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i'm waiting! new

#66807 - 05/02/04 12:52 PM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

i wish some dude would come and sweep me off my feet, Bev! i don't even require "handsome!" i think funny and smart will cut it.

i don't know why that hasn't happened, Bev. i've been told by my best friend that i look "unapproachable." she says i look confident and that men think that means i don't need them or that i already have a man. who knows!? i figure i'll meet the right guy at some point, right?

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JenX this is fantastic info on Fibro but scary to me.. new

#67154 - 05/03/04 05:35 PM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

because, since the onset of IBS I've had unexplainable hypersensitivity to all pain stimuli. Before I had a HIGH pain tolerance. Not now. I could not figure it out..........now I'm beginning to wonder about some fibro being a problem for me as well.
Is it always migraines or can it be tension headaches as well? I've had weeks now of them (continuously) and they drive me nuts. Nothing helps.........
BTW, what type of specialist positively diagnosed your fibro?

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Re: official diagnosis obtained.... new

#67158 - 05/03/04 05:54 PM

Kree

Reged: 10/08/03
Posts: 3748
Loc: Northern NY

Jen, I don't have time to read this whole thread, but I just wanted to let you know you'll be in my thoughts and prayers! At least you know exactly what's going on with you now... even if it sucks. Hang in there hun!

--------------------
"Anyone can exercise, but this kind of lethargy takes real discipline." -Garfield

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Kandee... new

#67209 - 05/04/04 05:19 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

yeah, it can be any kind of headaches that are a different pattern from the usual. here are some of the other symptoms (and it's only some, as each person presents a little differently. anyway, here goes:

dragging fatigue that gets worse as the day goes on
exhaustion at the end of the day
impaired memoty and concentration
apathy (like... "i have to turn off the light, but i can't be bothered, i just sit there unable to move to do it."
dizziness
headaches (including migraines)
insomnia (can't fall asleep/stay asleep/fall back to sleep)
nonrestorative sleep (sometimes called "the truck sign" as in "when i wake up i feel like i was hit by a truck.")
sensitivity to lights/smell/sounds (can even cause headaches, nausea)
chemical sensitivities
pain with intensity that varies from hour to hour and can increase with cold or damp weather, anxiety, stress, activity
widespread stiffness
restless legs
general feeling of weakness ("poor stamina")
IBS
increased mentrual cramps
frequent urination and/or bladder infections
nasal congestion
brittle nails, inferior hair quality
vertigo

actually, my new primary care doc said it was fibro on my very first visit with her, but referred me to a rhumatologist for "diagnosis." that's in quotes, 'cause similarly to IBS, there's no definitive test that says "Yes, you have fibromyalgia." there are "tender points" located all over the body, and they press on them to see if they're painful. (let me tell ya, it didn't hurt as bad as i was afraid it would, but it sure didn't tickle! and when she pressed on an area near my elbows - which have never hurt me before - i was really ouchy! in fact, they were still hurting 2 days later.

) anyway, they test to see if you have ouchiness at the tender points and they take a REALLY thorough history. they run all kinds of bloodwork to rule out things with symptoms that may mimic Fibro, like: rhumatoid arthritis, lupus, thyroid troubles, Lyme disease, Parkinsons's, MS, gout, and others, but my primary care doc knew that those needed to be done so she ordered the tests so i had the results before i even saw the rhumatologist. anyway, that's "all" there is to it!

that's the scoop on the fibro. i hope none of it sounds familiar to you!

--------------------

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I'm going to talk to my doc... new

#67223 - 05/04/04 06:19 AM

StephS

Reged: 09/11/03
Posts: 2123

about this too. I have a lot of the same symptoms too. My mom's doc told her the other day that Epstine-Barr can turn into Fibro. I don't know what's wrong with me....hopefully I'll get it figured out soon! To have IBS is one thing but then to add all these other factors too...is enough to drive on the the looney bin!

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Re: Jen..just curious.. new

#67224 - 05/04/04 06:21 AM

crc

Reged: 03/01/04
Posts: 161
Loc: Maine

Hi Jen,

Just curious if you are still going to stay gluten-free? Does that tie in to your diagnosis in anyway? I saw an ayruvedic doctor over the weekend and was told to stay off wheat/gluten...only my second day but feel way better already. They came out with these new gluten free Thai dishes at the grocery store made by Thai Kitchen..yummy. Check out www.thaikitchen.com. They are a little high in salt and sugars but you put on the spices and oil yourself so you can adjust these. They are great when you don't have the time or energy to cook.

Hope you are well. My brother in law is in Baltimore Maryland this week...so watch out for a lost looking Maine boy!

Cindy

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Re: Jen..just curious.. new

#67226 - 05/04/04 06:30 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

yes, i'm going to stay GF. i don't know if that ties into the fibro at all or not. i know that often people with fibro develop sensitivities to all sorts of things, for example to various smells - which don't bother me. maybe my sensitivity is to gluten? all i know if i feel much better if i stay away from it! i noticed a difference almost immediately, myself, especially when it came to bloating!

i have bought those Thai kitchin packs. they're awesome! love 'em.

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Re: I'm going to talk to my doc... new

#67227 - 05/04/04 06:36 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

from what i've read, epstein barr CAN lead to fibro and to CFS (for those who consider those different issues). i just read a book last night that considers CFS a different version of fibro with the predominant symptom being the exhaustion rather than the pain.

it can't hurt to get it checked out, Steph, especially since you're battling that fatigue all the time! another thing, apparently a lot of people with fibro are very susceptible to getting germies (colds, viruses, flu) because their immune system ends up flooey. i'm lucky i don't have that problem, which i mostly credit to eating so daggone well on Heather's diet! also... i never go out anywhere to get germies.

keep me posted. by the way, Steph, how are your thryroid meds helping the tiredness?

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Re: I'm going to talk to my doc... new

#67228 - 05/04/04 06:44 AM

StephS

Reged: 09/11/03
Posts: 2123

Thanks Jen!

Nope meds aren't helping. I'm going to the Doc again on the 10th. I'm going to have him test me for everything under the sun!!!

I haven't been to see him yet. That other appt I was telling you about..turned out to be with his nurse practitioner.....so I didn't go. I wanted to see the DOC!!! HELLO people!!!!! So I for sure have an appt with HIM this coming Monday! He's such a great Doc! I really like him! I know he'll help me out. I just know something isn't right with my body. I feel sick all the time. The fatigue is killing me. I have some good days or half a day and by 5 or so I get headache, nausea, hot, and dang tired! Its getting old now! I can't wait to see him!

I'll keep you posted! Thanks Jen

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Re: Jen and Steph.. new

#67230 - 05/04/04 06:54 AM

crc

Reged: 03/01/04
Posts: 161
Loc: Maine

Check out this article www.suite101.com/article.cfm/16528/107625

Cindy

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remind me about your appt so i can send you good vibes on Monday! -nt- new

#67235 - 05/04/04 06:59 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

--------------------

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Cindy

#67248 - 05/04/04 07:52 AM

StephS

Reged: 09/11/03
Posts: 2123

Thanks Cindy,

Thats a good article. I think I'll print that off and take to my Doc!

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A huge thank you...........as in the 4th paragraph new

#67329 - 05/04/04 10:28 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

it talked about thyroid antibodies.............and fibro....

When I was tested the normal range was 0-40...........Mine was 8,000.............that's right..........well, we don't know if it's right, I've been tested again but I don't have the results yet..........if it's right.........this could be the missing link...........FIBRO!

Kandee

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JenX

#67331 - 05/04/04 10:31 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

I just can't thank you enuf for this.............I counted having 12 out of the list.............

And I'm going to run with it if, when the thyroiditis is over, I still have these sypmtoms.

It is so disappointing to think one would have to live this way without relief. Keep us updated on your new meds ok?

You are a jewel!!!!

Kandee

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thanks, Kandee new

#67339 - 05/04/04 10:46 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

you know, i agree with you about people having to live like this. it's ridiculous, ain't it!? i guess if what i have is fibro (and it just sounds "right"), then i've had it for years. of course, it's worse now than it ever was, but tell me why no doctor ever put 2 and 2 together before!? i've always had aches and pains that can't be explained and the migraines and the carpal tunnel and the TMJ and dizzy spells and GEEZ... it should have occurred to someone before! i'm really angry with my doctor i just left. he's actually a friend of mine and he's going to get an earful from me. this is absurd. i see his colleague ONCE and get a diagnosis. what's he been doing, sleeping!?

anyway, i'm not angry overall. i'm kinda relieved to know what's wrong.

glad i could help you out. hope you start feeling better ASAP!

SMOOCHES.

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What?! new

#67350 - 05/04/04 11:14 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

Quote:

people with fibro develop sensitivities to all sorts of things, for example to various smells

What?! Oh my gosh, you're kidding me, right? (btw..I know I was going to do work but then I had to come get my book from by my computer)
Wait..I am so sensitive to smells you have no idea..like I thought it was my migraines but sometimes I can be sensitive to smells even when i'm not having a migraine and I just don't say anything cause I don't wanna seem dumb or bratty. You're kidding me, right. Oh my gosh..this is so weird. And..wait you said fibromyalgia and CFS are linked? Okay..sorry, I'm just like..whoa. Can people with CFS have smell-sensitivities? Okay..that's odd. Maybe it's just my migraines. Oh well. Thanks Jen.

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If you live life to love, you'll love to live life.

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Doctors and Fibro new

#67353 - 05/04/04 11:22 AM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Oh I so get this. I've had joint pain for 10 YEARS and the doctors couldn't tell me what it was. And migraines. And then I get IBS AND chronic fatigue. And STILL the doctors don't know what it is????!!!!

Did they sleep through med school?!

Heather suggested it to me and I looked it up and I've got practically all the symptoms! How b***dy obvious!

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that's what i'm saying to you! new

#67357 - 05/04/04 11:26 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

i have the same thing! and they got me ALMOST there, what with the chronic fatigue syndrome. dag. the same day my doc told me i have the CFS, he checked my knee that always hurts and told me he "couldn't find anything wrong with it, clinically." HULLO!

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Re: Kandee... new

#67358 - 05/04/04 11:31 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

haha..I have about 14 of these. Let's just pretend it's from a combo of other things

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If you live life to love, you'll love to live life.

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CFS- fibro link new

#67363 - 05/04/04 11:42 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

actually, TB, a lot of doctors and researchers think that CFS and FMS (fibro) are related disorders. in fact, a book i read just last night says that some people consider CFS just a sub-category of fibro. a different presentation of symptoms, really. much of the disorders are the same: pain, fatigue, disordered sleep, etc...

as for the smell sensitivities, i don't have that, but i see it on every list i read! i wonder if LS and Linzy have that?

you wanna here something really cool? (in a weird medical way) apparently some people with fibro who are beginning a flare of symptoms may actually notice a strange smell that's not apparent to anyone else. like, and i'm making this up, of course, you may be in a room of people and you smell something that smells like nail polish remover, but no one else does. and then your flare begins that day or the next. WEIRD, huh!? that tells me it's something in the central nervous system gone awry...

also, people develop sensitivities to chemicals and stuff, too. so maybe you never had a problem with cleaning products bothering you (either the smell or if some touches your skin) but all the sudden you have fibro and are reacting adversely to it. also, some fibromyalgics react weirdly to medications. FUN, ain't it!?

catch ya later.

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One more question please, JenX....... new

#67373 - 05/04/04 11:57 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Before you (and your wonderful posts), and before having these symptoms that make me feel like just a lump.........I was, I suppose, like most people. They hear the words fibromyalgia and CFS and don't think much of them, that they must be in people's heads or they are minor complaints...........mountains out of mole hills you might say. If Fibro/CFS patients could give the rest of the population these for just one day they'd change their tune!!!

The headache/dizziness, like I said, is driving me nuts.....If I move to quickly the dizziness is much worse. The headache is just always there. It goes down into the jaw and feels like I've been clenching yet I haven't. No OTC will touch it. (Funny thing is, reg tea with caffeine is the only thing that helps, but that sparks IBS cramps.) I don't have carpal but do have TTS, Tarsal tunnel syndrome, and have had that a few years now, but it hasn't been kicking up until recently. Then you mentioned the restless legs...........OMG, RLS..........horizontal kickboxing at it's best. Funny thing is the common meds for IBS, Bentyl and Donatol make it worse for me. As one pharmascist explained.......it may affect the smooth muscles but can either excite or calm the central nervous system.......with me, obviously it excites it. Sleep I'm ok with except up a million times a night, and never ready to automatically go back to sleep. Oh, I could go on and on, but won't take you from other patients, Dr. JenX. Since IBS goes along with this, it makes me think we need another board for just related conditions. After all this board is for fun...isn't it?

Oh yes, about my one last question. How, briefly does Fibro differ from CFS?

Thank you again.............what a wealth of information on the subject you are...........you know, you really should have been a doctor specializing in these areas.

Kandee

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Re: I'm going to talk to my doc... new

#67376 - 05/04/04 12:03 PM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Oh Steph, If you're going to the "looney bin" reserve me a spot, ok?

No, seriously I hope you get some answers, and soon. You are to young, and have to many responsibilities with the children and a home and a hubby to have all these symptoms.

Kandee

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you may be on to something.... new

#67403 - 05/04/04 12:46 PM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

i wonder if Heather would put up another board so people can talk about related syndromes and diseases?

ok, let me hit the high notes on your post...

Quote:

Before you (and your wonderful posts), and before having these symptoms that make me feel like just a lump.........I was, I suppose, like most people. They hear the words fibromyalgia and CFS and don't think much of them, that they must be in people's heads or they are minor complaints...........mountains out of mole hills you might say. If Fibro/CFS patients could give the rest of the population these for just one day they'd change their tune!!!

you know, i wasn't sure if this was in people's heads or not, either. that's why i wasn't too to happy with the CFS diagnosis, though it was obvious something was wrong! but they say they can actually test some of these pain responses and see that not only are they real, they are more intense than other people's pain. it's all quite fascinating, actually! (to me) anyway, finding out you have a chronic illness is like death, you do the stages: denial, depression, anger, bargaining, acceptance. i think i skipped some! when i was in the CFS diagnosis i think that was my denial. now i can't deny anymore! guess i skipped right to acceptance with the occasional anger tossed in for good measure.

Quote:

The headache/dizziness, like I said, is driving me nuts.....If I move to quickly the dizziness is much worse.

i go through periods like that, too. it's maddening! i also get the dizzies when i stand up, even if it's not too fast! i was just telling TaraBara the other day that i have to "move like a cat...." slow and graceful, just to prevent the dizzies! i even get dizzy after a big meal (well, relatively big), the medical theory being blood has been diverted to the stomach to digest, and then you get light headed. i'm babbling, tho...

Quote:

The headache is just always there. It goes down into the jaw and feels like I've been clenching yet I haven't. No OTC will touch it. (Funny thing is, reg tea with caffeine is the only thing that helps, but that sparks IBS cramps.)

a) one of the things about fibro according to this book i am reading is that fibro pain is often non-responsive to regular pain meds. if i sprain my ankle, Advil may help tremedously, but for the pain in my left pinky that comes and goes and is fibro-related, no amount of Advil in the world can touch it. INTERESTING, NO!?

b) here's something i read and i haven't had a headache to test it yet: try putting ice on your throat and/or on the back of your neck! seriously. and let me know how that turns out, please! (there's a trigger point in the throat that can cause headaches - don't even get me started on TrPs! that's another subject all together!)

c) are you sure you're not clenching or grinding at night!? i used to do both but stopped the grinding when i got a roommate in college!

the grinding i stopped eventually. guess my body decided to switch up to other kinds of stress relief like IBS. (yay) that jaw thing = TMJ. and headaches and achy jaws were my symtoms.

Quote:

I don't have carpal but do have TTS, Tarsal tunnel syndrome, and have had that a few years now, but it hasn't been kicking up until recently. Then you mentioned the restless legs...........OMG, RLS..........horizontal kickboxing at it's best. Funny thing is the common meds for IBS, Bentyl and Donatol make it worse for me. As one pharmascist explained.......it may affect the smooth muscles but can either excite or calm the central nervous system.......with me, obviously it excites it.

fibro can cause weird reactions to medications. interesting! and i didn't realize i had those RLS things 'til just a few days ago. it's like now my subconscious is looking for this stuff and when it happens it wakes me up! i kicked so hard last night i scared myself! LOL.

Quote:

Sleep I'm ok with except up a million times a night, and never ready to automatically go back to sleep.

YES! see, that's me, too. i don't have trouble falling to sleep most of the time (unless i'm anxious about something, but that's NORMAL). but i wake up a quadrillion times to pee! and that apparently is a sign i'm not getting DEEP, Level 4 sleep (the kind that most fibromyalgics are desperately in need of, the kind in which cellular repair takes place!) (SEE HOW INTERESTING THIS ALL IS!?

) so, actually, that's considered a type of insomnia- not getting enough deep sleep. do you ache in the mornings? do you wake up feeling "unrefreshed?" even if you slept for 10 hours!? do you have what one of my books called "truck sign?" (waking up feeling like you were run over by a truck!?)

Quote:

Oh, I could go on and on, but won't take you from other patients, Dr. JenX. Since IBS goes along with this, it makes me think we need another board for just related conditions. After all this board is for fun...isn't it?

agreed!

Quote:

Oh yes, about my one last question. How, briefly does Fibro differ from CFS?

really, it's in the prevailing complaint from what i read. at least a lot of researchers/doctors think that. CFS is mainly about not feeling rested/being fatigued and FMS is about pain. BUT... while i have fibro, my main complaint was fatigue! the pain... well, crud, i was just used to it. it's been going on so long i hardly give it a thought even though it hurts everywhere all the time. well, i give it thoughts, but never mention it. you know what i mean...

Oh! and i believe if you have the tender points i talked about before in the original post, then that distinguishes it as fibro. i guess some CFSers may not have those, or as many. i tried for years to test my own tender points and it never worked, but boy did the doctor hit 'em right away!

Quote:

Thank you again.............what a wealth of information on the subject you are...........you know, you really should have been a doctor specializing in these areas.

thanks. i'm blessed because a) i remember what i read easily if it's something i'm interested in and b) i like to talk a lot!

but if i were a doctor, i would have the same training as the rest of 'em and be just as schmucky! LOL

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Re: CFS- fibro link new

#67422 - 05/04/04 01:48 PM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Quote:

as for the smell sensitivities, i don't have that, but i see it on every list i read! i wonder if LS and Linzy have that?

YES, big time! both as a migraine trigger and other times when it just makes me feel unwell, cruddy, icky, hard to describe.

Okay, me back to bed now. And Dr.Jenx you get nobel prize for fibro education and advocacy. awesome, sweetie.

--------------------
Laura
Keep it simple!

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really? new

#67438 - 05/04/04 02:06 PM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

thanks, LS. i'm glad i'm on track. i've been reading real hard!

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Yes! Really!! -nt- new

#67505 - 05/04/04 04:42 PM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

--------------------
Laura
Keep it simple!

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Re: really? new

#67611 - 05/05/04 03:13 AM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

I've always been pretty sensitive to smells with my migraines, but now my sense of smell is awesome, so bad smells make me feel poohey. But I can tell who's been in a room by the smell and all kind of things that my HTB can never smell - sometimes I feel like a human bloodhound!

Jen, you should be a patient advocate or something. You're awesome at explaining all this!

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Kandee new

#67612 - 05/05/04 03:19 AM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Oh, I get the jaw thing...sometimes I feel like I must have mumps or tetanus or something, my jaw gets so stiff and painful!

And the dizziness! And feeling faint, etc.

And I never knew till I found out about Fibro that restless leg wasn't normal

.

The only OTC painkiller I find works for the Fibro pain is Ibuprofen, but obviously I try to avoid that as it's so bad for sensitive tummies. Paracetomol and codeine does very, very little for my Fibro pain...but works for my headaches!

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Re: Cindy new

#67629 - 05/05/04 05:47 AM

crc

Reged: 03/01/04
Posts: 161
Loc: Maine

Your welcome Steph. I hope you get a breakthough with your Doc. Let us know.

Cindy

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Re: YourWelcome! new

#67630 - 05/05/04 05:56 AM

crc

Reged: 03/01/04
Posts: 161
Loc: Maine

Wow! That is high!

I'll tell you I have gotten so much farther with helping myself from listening to these boards than with any Docs!

Good Luck talking to your Docs.
Cindy

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All such interesting information.... new

#67664 - 05/05/04 07:40 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

but, if this is what I have, and it's going to be chronic, I have no idea how people live with it, day in day out. I have a great friend (who lives in another state) who is a psychologist that works in pain management as her specialty. She took 3 years to learn to walk after a bad car accident, has IBS, Diabetes, Fibro, hypertension, and a pacemaker her heart is totally reliant on. Yet, she goes on and helps others in the most awesome ways I've never seen... Says that's the key, for one..........is to stay busy and not give the mind a chance to dwell on it. She too, addresses the 5 stages of death with her patients.

I didn't realize the blood going to the stomach after a meal could create the dizzies. Makes sense though, since I know my hubby had worse heart arrhythmias (the dangerous kind) after he ate and the explination was just that........all the blood went to the stomach to aid in digestions. All the more reason to eat slow and light!!

Interesting about the pain meds NOT helping fibro related pain, only others. I can believe it. The mind works in mysterious ways. Have you or anyone else here explored acupuncture for pain? If this is to be an on going thing with me and there is no relief from conventional medicine that is one of the first of the other areas I'm going to look.

I tried your ice on the neck trick last night. Contrary to what I thought, the ice on the BACK of the neck felt pretty good, and dulled the pain but not for long. I didn't do it repetitively, and maybe that's the answer. On the front of the neck it was not a good thing..........the goiter said "no way this does NOT feel good". The goiter got it's way. I hate that word, goiter, it's an ugly word, but then it's an ugly protrution as well, but I'm not pulling a Diane Keaton (with turtlenecks) just yet.

Not chenching or grinding at night. The grinding came to a hault when I got crowns, for some strange reason. I am trying to always mindfully keep my jaw loose in hopes that will help. I did all those headache exercises, like pulling your ears out to look like Alfred E. Newman, etc. but they don't seem to do it for me. Wonder if a good massage would help.

The dizziness........I was explaining to my friends at a luncheon the other day. One smart ass said, "so what else is new with you?" sheesh, they know me to well.

Getting up a million times to pee when you have like you said, "a bladder the size of a fennel seed" (love that) is so true. I understand that's an IBS thing. I DO feel best in the AM and it goes down hill from there as the day goes on. I never, never, ever took a nap before. Now I want one when ever I can!! Irksome! How do you get anything done? CFS ? Likely.

The RLS runs in my family. I can remember my mom and my aunts getting it at about this age and it running for about 10 years then going away, so I NEVER associated it with fibro. Drives you nuts, doesn't it. Fortunately it only happens for about 15 minutes until I go to sleep, but if I take an IBS med for spasms, it will go on all night.

Question. For the fatique have you ever gotten a vitamin drip? It takes about one and a half hrs. on an IV and is awesome since it all goes into the blood stream and never has to get processed thru the gut. When I got soooo sick with the IBS at first, I couldn't take any vitamins, let alone much food. I went to the vit drip and it was the only thing that helped. It's not covered by any insurance,and not cheap, and usually only done by an ACAM M.D. If you're interested look at www.acam.org for a doctor in your area and give them a call. A little tip: take or ask if they have heating pads there and cover the IV site with the heating pad, also ask procain be put in the IV solution........if you are supper sensitive to pain this all helps. Next chance I get I'm going in for one, AFTER I get to know more about the thyroid mess I'm in. I see an Endo in about 2 weeks and if I don't like his answers I'm going back to my ACAM M.D....he's the one that diagnosed the subacute thyroiditis in the first place.

Thanks again, Keep sharing, JenX an all the other fibro people here.......it really helps!!! I'm sure we are boring the heck out of the others..................thus we need a different room to post in. Right?

Kandee

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Linz

#67670 - 05/05/04 07:51 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Wow, I'm glad to know I'm not in the only boat. Thanks Linz. I can soooo relate. Unfortunately the jaw doesn't go into "lock jaw" as in unable to eat. That I do just fine, in fact to fine for my own good. Yep, the feeling faint goes with the dizzies............not a good thing. I was taught when I was little to always sit right down on the floor if you felt faint and put your head down in front of you. I've been doing that a lot. Makes me feel stupid, but at least I won't fall down if I DO faint. RLS is not a good thing when you have a bed partner. Hubby just laughs, but DOES stay a good distance away when that is occuring! LOL

Coedine for the headaches? Works for me...I could do that..sounds good............bet I could get to needing it on a daily basis, LOL, right? But...............here again, it does NOT address the other fibro symptoms? We are sure wired animals, we humans, aren't we? Have you ever tried acupuncture? I'm wondering if there isn't certain Yoga positions just for headaches. Anyone know?

Thanks,
Kandee

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Tarabara, There is no way YOU can have these things and new

#67674 - 05/05/04 08:00 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

have it be fibro............I just won't let it happen, ok? How about if we call them "growing pains" and soon you'll be gone with them. You have an entire life ahead of you, and IBS is bad enuf for you to have to deal with without this other junk. Don't dwell on it...........just live every day to the fullest you can.......this is some of the most fun times of your life........so enjoy them!!!

Kandee

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Re: Linz new

#67675 - 05/05/04 08:00 AM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Hmm, I'm considering acupuncture too. Heard loads of good things about it with migraines and Fibro.

When this crazy time (new house, wedding, etc) is over, I'm going to go see a rheumatologist and then hopefully get a referral to an alternative doc.

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Vit drips new

#67679 - 05/05/04 08:03 AM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

I've heard loads of stories of B12 injections helping Fibro, but the scientific studies couldn't come up with a link. I'm guessing that's probably because all these autonomic nervous disorders effect everyone differently, particularly when it comes to what helps relieve symptoms!

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Re: Tarabara, I second that opinion!! new

#67696 - 05/05/04 08:20 AM

gigi

Reged: 03/21/04
Posts: 1442
Loc: South Texas

Honey, you are so young to be this ill. I am just not going to have it either. Dont give in to it, you have to battle it with positive attitude, I promise.

Your future holds so much, I want you to take advantage of every minute,there is no time to waste! Keep on going and going and going ....

{{{{{{{{hugs}}}}}}}}

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Dont tell God how big the storm is, tell the storm how big your God is !!!

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Re: Tarabara, one more thing !! new

#67698 - 05/05/04 08:23 AM

gigi

Reged: 03/21/04
Posts: 1442
Loc: South Texas

I am off to go clothes shopping, I wish I could take you with me. I know we would have fun !!!!

------------

Don't tell God how big the storm is, tell the storm how big your God is !!!

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gigi

#67715 - 05/05/04 08:43 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Off the subject, but WHERE in south TX are you?

Hubby wants to move to west TX and I have a daughter in Austin.

If your old clothes are getting to big, I'll take 'em. I'm putting on weight

.

Kandee

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Linz

#67721 - 05/05/04 08:50 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Didn't know you could get a referral to an Alt. Med. doc where you are. That is fantastic!!!!

I can't here. Have to pay out of pocket for anything out of the ordinary. Some insurance companies in the US have started to cover things like acupuncture/chiropractic, etc. but not mine.

Vitamin and mineral supplements/injections don't make money for the western med. docs so they poo-poo them every chance they get. If a western med. doc can get money out of insurance for B-12 injections then he'll use them. It all boils down to money. Medicine is a business, plain and simple. It's sad.

Kandee

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i concur as well, TB., but.... new

#67722 - 05/05/04 08:51 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

speaking as someone who had these problems even way back in highschool, it may be best to get all the diagnosing done early so you know what you're dealing with.

that said, i absolutely FORBID you to have fibro.

have a nice day.

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Re: i concur as well, TB., but.... new

#67731 - 05/05/04 08:59 AM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

me too tara. better to know that to think you're wierd all your life like me !! (um,...wierd-ER)

I smiled at Kandee's saying to call them growing pains, because the fibro books say that fibro in young people is often referred to as growing pains! So she's right! Unfortunately.

--------------------
Laura
Keep it simple!

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Re: All such interesting information.... new

#67732 - 05/05/04 09:01 AM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Kandee, the books say massage helps a lot. Even the Arthritis Foundation quotes studies confirming it. I'm going for my first one tomorrow. My cousin swears by it. It actually has been shown to calm the autonomic nervous system and the effect lasts for days, even weeks.

--------------------
Laura
Keep it simple!

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Re: i concur as well, TB., but.... new

#67734 - 05/05/04 09:04 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Really, really you CAN have fibro as a teen? OMG, that is just terrible!!!

But, I suppose if they can diagnose 6 MONTH year olds having hypothyroidism any condition can come at any age.

This all makes me sooooo angry!!!!

Kandee

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Re: Tarabara, There is no way YOU can have these things and new

#67737 - 05/05/04 09:05 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

Oh...I'm not saying I have this. See..that's why I say it's just from other things combined. And I'm getting better anyhow. I'm quite confident I'll get better. I just have to pace myself. I'm DEFINITELY not going to label myself with having this (not that it's a bad label) because I don't feel like having another label. I"m going to be free!

Thanks for the kind words!

--------------------
If you live life to love, you'll love to live life.

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Re: i concur as well, TB., but.... new

#67738 - 05/05/04 09:06 AM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

yeah, isn't it awful. i'm going to file a complaint...as soon as i can figure out who's in charge.

My cousin has had it since 8th grade after a virus.

--------------------
Laura
Keep it simple!

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Re: Tarabara, There is no way YOU can have these things and new

#67739 - 05/05/04 09:06 AM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Good for you, babe!

--------------------
Laura
Keep it simple!

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Laura Sue new

#67740 - 05/05/04 09:07 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Thank you so much LS.............well, that cinches it.......I'm going to find a good one to go to. I know they have different kinds, deep tissue, Swedish, etc. I don't what kind to get, any ideas?

Kandee

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Re: i concur as well, TB., but.... new

#67742 - 05/05/04 09:09 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

Thanks Jen..I forbid myself to have fibro too. I think we have a deal then?

If I would have given in to things like this...I would've been gone a long time ago..lol. I'm here and I'm not goin ANYWHERE except to cool places

P.S. You have a nice day too!!! (on that union job of yours

)

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If you live life to love, you'll love to live life.

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Love your attitude!!! More should think like you!!! -nt- new

#67744 - 05/05/04 09:09 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Kandee

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Thanks for being so nice! -nt- new

#67746 - 05/05/04 09:11 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

--------------------
If you live life to love, you'll love to live life.

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Yeah... new

#67750 - 05/05/04 09:15 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

by now I just know what my body feels like it can do a certain day. My family understands now too and we all know I"m getting better and working to get even better. There were times when I thought I was weird but now I just know I'm me.

And you're you LauraSue and you surely aren't weird!

--------------------
If you live life to love, you'll love to live life.

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Re: i concur as well, TB., but.... new

#67752 - 05/05/04 09:16 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

I got a virus in 8th grade..haha. Before all of this started.

--------------------
If you live life to love, you'll love to live life.

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Re: Tarabara, I second that opinion!! new

#67754 - 05/05/04 09:18 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

Thanks for the kind words! You're so nice! And don't worry! I am like the energizer bunny, mentally at least, I keep going and going and going. I love life so you don't have to worry about me

--------------------
If you live life to love, you'll love to live life.

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Re: Tarabara, one more thing !! new

#67755 - 05/05/04 09:19 AM

tarabara04

Reged: 04/06/04
Posts: 442
Loc: Bay Area, California, USA

OOOOOOOOh! I bet we would!!

Have fun!!! Update us when you get back!!!!

--------------------
If you live life to love, you'll love to live life.

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Kandee new

#67757 - 05/05/04 09:21 AM

jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

i understand what you're saying. it's funny, i have had many of the same symptoms for all of the years i can remember (don't remember childhood so much, but do remember bad "growing pains."). i am 33 now and remember the TMJ stuff in high school and the carpal tunnel around that time or maybe early college years. ever since, it's been aches and pains galore, none of which had an explanation. recently, of course, i have the intense fatigue, which i hadn't had before to this degree, so in a way, that's new. i guess i have always been hoping that it would all go away sometime. the idea of it being chronic is demoralizing! oh well, i got through the last 33 years, i can get through the next 33 and the 33 after that, right? i have decided to pretty much just keep doing what i've already been doing and add two things: 1) i must work on getting deep sleep, because i know that will make me feel better and 2) i can now, at least, get the occasional prescription of muscle relaxants and pain meds, which was like pulling teeth BD (before diagnosis!).

i am going to be looking into acupuncture soon, actually. i've read that some people find it beneficial. some also find relief from acupressure. the one thing many people seem to be pleased with, however, is YOGA. i've got to get into a class soon!

yes, with the goiter (horrible word, i agree), ice wouldn't be too comfortable. sorry, didn't realize that was (yet another!

) medical problem on your list. poor you! glad to know the ice on the back of the neck may have helped, some. that's good news.

i read something the other day about myfacial pain, and there were some tips for relaxing the jaw muscles. that's got to be where your headaches are coming from. the tips showed an almost acupressure-like spot to press on that may help relieve the pain. if you're anything like me, you've probably dug your fingers into your jaw out of instinct, just to get the dang pain to stop (oh, how i remember the TMJ! i'm sooooo glad that went away -for now?!- and i totally feel for you, Kandee). i'm not going to try to remember the spots right now, but i'll see if i can come up with a way to explain them to you tomorrow (i'm off of work and will be home by the book!). i don't want to mess up and accidentally cause you MORE pain!

by the way, i've tried some of the suggestions from this book (title!? can't remember!) in regards to using a tennis ball to do a kind of makeshift acupressure. it REALL WORKS! i was so impressed. i have a horrible spot on my neck/shoulder that has been tight for 2 1/2 years (yet "there's nothing wrong" according to the doctor! ARGH!). the tennis ball thing really went a long way to making that more bearable. also used it to loosen up some muscles in my hips that really drive me crazy (probably from wearing high heels 24-7!

). but now i'm babbling again!

as for the vitamin drip, i'm going to ask my new doctor about B12 specifically, since there's a genetic thing in my family in regards to that. but otherwise, i had never given it a thought 'til you mentioned it. didn't know it was an option. i will mention it to my doc. (i have a book i take notes in just in case the fog rolls in. i hate when i go blank at the doctor's office or at the autoshop!)

thanks for chatting about this! i really like feeling like i have company in this.... hopefully you aren't a fibro chick, but still it's nice to be able to talk through stuff with people, especially people i already know i like! so thanks again.

--------------------

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Re: i concur as well, TB., but.... new

#67771 - 05/05/04 09:31 AM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

I reckon I've had Fibro since a virus in high school! Sounds like a common story. But it didn't stop me doing anything through my teens and I'm enjoying life now fine! (Except that my job sucks, but that's another problem

)

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meds and money new

#67776 - 05/05/04 09:35 AM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

It sucks that being sick is big money to someone, but I guess at least it means more companies are interested in finding meds for our weird and wonderful complaints!

Btw, I can only go see all these doctors because I've got private medical insurance on TOP of NHS benefits! And I can only use that because I was on my parents policy so my membership dates back to well before all this started!

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Massage new

#67778 - 05/05/04 09:36 AM

Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Just make sure it's not an airy-fairy, strokey aromatherapy massage. They're great for smelling nice, but not good for loosening joints!

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Re: Laura Sue new

#67827 - 05/05/04 10:52 AM

LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Kandee,
From what I've read, it's best to start with traditional Swedish. I also will be telling her I have fibro so not to press too hard. AND that I have fragrance sensitivities so no aromatherapy oils for me either, as Linz said.

--------------------
Laura
Keep it simple!

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Thanks Linz and Laura Sue.... new

#67848 - 05/05/04 11:49 AM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

I love it when Linz said

Quote:

Just make sure it's not an airy-fairy, strokey aromatherapy massage. They're great for smelling nice, but not good for loosening joints!

Someone wanna explian the "airy-fairy, strokey " to me.........oh how I love the Brit's language.

Ok, will stick with Swedish, and not to hard. I've had one, before IBS, at a fancy, shmancy place in Palm Springs and after it was thru she said "well, how was it?". I told her if I had something to compare it to I would tell her!!! LOL

I DON'T have a problem with smells, but a friend of mine does, something terrible. When we are in Vegas together for a trade show I convinced her to try the O2 bars. The aromatherapy got to her............and gave her the worst headache. They DC'd the scents before her time was over, and gave her some peppermint oil to rub on her temples and back of the neck and wrists. By golly, it took the headache away. She's been using it ever since she got back home to MS. Ever heard of such a thing? I tried it with peppermint extract LOL (didn't have any essential oil) but I don't think it was quite the same so will have to get some oil and try it.

Kandee

--------------------

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Peppermint Oil new

#67954 - 05/05/04 04:04 PM

tuxedocat

Reged: 02/09/04
Posts: 279
Loc: Ithaca, NY

Yeah, peppermint oil is great for all kinds of headaches (probably all kinds of aches in general). It helps me with tension headaches and migraines. Doesn't get rid of the headache, but helps make it feel better.

--------------------
--Julie

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Re: gigi new

#67970 - 05/05/04 05:10 PM

gigi

Reged: 03/21/04
Posts: 1442
Loc: South Texas

I live in Brazoria County. I am about 45 minutes from the beach in Freeport. I love it here, West Tx is hot and dry, are you sure you want to live there? I love Austin and the Hill Country. Your daughter is in a beautiful place. Lucky girl.

I had no luck on my shopping trip, it seems that I am in between sizes, hard to fit anyway, I am in between a petite and misses. Dang. I got tired and came home.

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Re: Peppermint Oil new

#67994 - 05/05/04 06:19 PM

Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Hmmmm, thanks Julie,
See, just another use for peppermint.......what would we do without it?
I'm going to have to get the OIL now and try it...now that I have tension headaches I've never had before in my life......sheesh.
Julie, do you have fibro TOO?????????
You know, this may be the longest list of responses to a post I've ever seen.............See what you started JenX????

Kandee

--------------------

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Re: Peppermint Oil new

#68012 - 05/05/04 07:53 PM

tuxedocat

Reged: 02/09/04
Posts: 279
Loc: Ithaca, NY

No, I don't have fibro, I don't think! But it's so interesting learning about it. I figure, with headaches and IBS and this weird weight gain thing, I should at least know they symptoms of fibro, just in case! I think I'd be a whole lot more fatigued and ouchy. I do have that sensitivity to smell, but I associate that with migraines. My body just aches from sitting at the computer and being hunched over books all the time

--------------------
--Julie

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