Laura Sue, Linz, JenX, and now me
#106715 - 09/18/04 11:35 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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Well add me to list of official Fibro diagnosis. I am a little unsure about all this and I am reading up on it. But today I woke so achey and tired b/c last night was a really bad night, no sleep. I called my GP, who has limited weekend hours, and I told him I can't seem to get rid of these minor muscle aches and worst of all I am SO tired. He told me to come in I probably have the flu. So I did and we went over all my symptoms that I have frequently. I kept telling him I don't know if you consider this a symptom but I frequently blah blah blah... When I was finished I got the feeling he thought I was a nut. So I said look I go on this board for support for my IBS and chat w/ others in the same boat and some of them suggested I ask you about Fibro something or another. And he turned his pad around that he had been writing on and he had already wrote down Fibromyalgia. He said you mean this? I said yes and he said he was 95% sure that is what I have and then did the tender tests. After that he said he was 99% sure that is my diagnosis. And then he spewed out so much knowledge about it I was spinning when I left his office. He said he will send me to a rheumatologist if I want a second opinion.
The good news is he doesn't think I am crazy. I now have a name to my problems and the possible cause of my IBS. And he prescribed me some medications that he says will help.
He prescribed me Effexor XR and Naproxen. Has anyone had any experience with these meds? I looked up the Effexor and it says it is for depression and anxiety. (So maybe he does think I am a head case?  Just Kidding.) He said it is for the anxiety often associated w/ Fibro that he thinks I have even if I don't think so. I hope one of these will help me sleep better b/c right now that is my biggest symptom as far as I'm concerned. I am so darn tired!!!!
Anyway there is my update and I go back in a month for a follow-up visit.
Thanks for all the help Linz and Laura Sue! And the suggestion to go to the doc about this.
Christie
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Christie
~Hoping and Praying for Sleep!~
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Wow, I guess doctors aren't stupid are they? Did you have a lot of the symptoms that are associated with fibro? I think there's a slight chance I might have it but I'm not sure.
My main symptom is waking up exhausted and being tired a lot. I don't really have much pain though. But I have IBS, TMJ (a jaw pain disorder) and am on an anti-depressant.
I've always thought of fibro as something closely related to arthritis. Someone at my work has fibro and was taking arthritis meds for years before it was properly diagnosed. Since I don't have those aches and pains I never thought it fit me.
Thanks for sharing your story. I'll have to mention it to my doc too and she what he thinks. 
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Hi Christie
Well, at least you know and now you can take some positive action to feel better. Great that your doc was informed about Fibro. I don't have Fibro but I have read a lot about it from the people on the boards. It seems like getting a good nights sleep is key to feeling better.
Anyway, I'm sure you will get some more experienced advice for the others.
Good luck
Barbie
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I have been on Effexor for over 3 years and am VERY happy with it. It really helped with my anxiety. As I have said before on this board, anxiety is very common among IBS sufferers.
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Adopt the pace of nature: her secret is patience. ~ Ralph Waldo Emerson
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My doc said I am a classic case of Fibro. He said if I read up on it I will be surprised by how many of the symptoms I have. My major symptoms were can't get to sleep, once asleep my mind races and I can remember some of the things I thought about when I wake up in the A.M. And I would be exhausted and I would get migraines or some type of headache or feel like I pulled a muscle after a bad night of sleep. But I would not get this everyday or even every week and the pain is not severe. So I didn't think I fit the diagnosis for Fibro but I do. It has been worse lately b/c I have been having more bad nights of sleep than good. My doc said it is good I caught it early most patients don't get diagnosed until around 40. I also had some symptoms I didn't think would be related such as frequent urination, always cold, crawling itchy skin sensations,etc. I would talk to your Doc about. I was reluctant but it turned out he knew exactly what it was and didn't think I was crazy.
Good Luck,
Christie
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Christie
~Hoping and Praying for Sleep!~
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Hi- I have not as yet been diagnosed with Fibro since I just saw my rheumatologist the other day--but I have and still take Naproxen ( the over the counter form is "Aleve").
It has been a life saver for pain relief (back, legs, headache) altho taking too much can affect the stomach in some people--so just go slowly with it--. I take Zoloft on very low dosage--probably why it doesn't do much !! Might see about your medication- people seem to do well on it.
feel good
carol
carol
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I have had panic/anxiety disorder since I was a child. Is there a link between anxiety and IBS? Have you had any undesirable side effects with Effexor? Thanks.
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Ah sh*t. I hoped you didn't have it! Oh well, at least you've got the diagnosis without a problem - it's great that the doc was going to diagnose it before you mentioned it!
Anti-depressants are often used with Fibro and not just for the depression/anxiety that having it can cause. They can encourage better sleep and higher serotonin levels might help with the pain. I'm not sure what Naproxen is - hopefully LauraSue can help. I assume it's to help you get into stage 4 (deep) sleep.
I'm glad you're going back in a month. That way, if you're still having loads of problems with sleep, he can give you something stronger. I know Jen is on Ambien and loves it. I'm not on anything for that yet.
Check out FibroHugs. There's loads of info there. And look for a support group in your area - loads of people have this!
Good luck. {{{HUGS}}}
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Here is just one item I have found on the web about the link between IBS and disorders such as anxiety:
J Clin Psychiatry. 2001;62 Suppl 8:38-45; discussion 46-7. Related Articles, Links
Irritable bowel syndrome, anxiety, and depression: what are the links?
Lydiard RB.
Mood and Anxiety Program, Medical University of South Carolina, Charleston 29425, USA.
Irritable bowel syndrome (IBS) is a common and potentially disabling functional gastrointestinal disorder characterized by abdominal pain and altered bowel patterns. A significant amount of clinical and research data suggest the importance of the brain-gut interaction in IBS. This review examines the observed high prevalence of psychiatric disorders in patients with IBS. The published literature indicates that fewer than half of individuals with IBS seek treatment for it. Of those who do, 50% to 90% have psychiatric disorders, including panic disorder, generalized anxiety disorder, social phobia, posttraumatic stress disorder, and major depression, while those who do not seek treatment tend to be psychologically normal. Both physiologic and psychosocial variables appear to play important roles in the development and maintenance of IBS. Recent information suggests that the association of IBS and psychiatric disorders may be more fundamental than was previously believed. A brain-gut for IBS is presented, and the role of traumatic stress and corticotropin-releasing factor as modulators of the brain-gut loop is discussed. Finally, the rationale for the use of psychotropic agents in the treatment of IBS with or without psychiatric symptoms is presented.
The only side effect I have noticed is a slight diminishing in sexu ual function, a common side effect with antidepressants. It is SO worth it, though.
My one piece of advice is if you end up trying a medication ask to start on pills rather than capsules and cut the pills up and increase to full dose by a quarter of a pil every three or four days. That will help minimize side effects. Then once you are up to full dose you can switch to capsule. Same for going off -- must be done very slowly to prevent not very fun withdrawal effects.
good luck. I highly recommend you talk to your dr about meds.
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Adopt the pace of nature: her secret is patience. ~ Ralph Waldo Emerson
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Thanks Christie. I'm glad you caught it early.
Did he give you something to help you sleep? My previous doc gave me Trazadone to help me with my insomnia last year but it made me feel like a zombie all day and didn't help me sleep at all.
I think that if I get my insomnia under control and actually sleep at night instead of having a million thoughts race through my head I'd be ok.
Let us know if your meds help you and good luck!
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Thanks for all the information. It certainly makes sense to me that these two health issues are linked. I have been on a low dose of Prozac for nine years now. I have a few friends who are on Effexor and they claim to be quite happy with it.
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Well, welcome to the club, girlfriend. Sorry to hear you actually do have it, but glad you got it diagnosed. I laughed out loud when you described him showing you the chart where he'd already written fibromyalgia! Sounds like you have a good doc.
Starting with a low dose of **ELAVIL** is the "gold standard" for fibro treatment right now. I've been on it for over a year and it has definitely helped. It is sedating so unless your doctor says otherwise, it would normally be taken an hour or two before bed time.
You'll need to start practicing good "sleep hygiene" too, meaning standard bed time, no reading in bed, making sure the room is cool enough, all that stuff. Do a google search on sleep disorders and you'll find a list.
I take naproxyn (OTC name Aleve), but if you're IBS-D (sorry I can't remember, ribbit!), be warned it's a stomach irritant like all NSAID's. I take it with an Imodium and it works fine. If you have trouble tolerating it, ask your doctor about Ultracet, which is tylenol and tramadol. Tramadol has been proven in studies to be more effective on fibro pain that other pain killers.
I also recommend the FibroHugs website that Linz mentioned. There's also lots of really good books (and some not so good). But don't overwhelm yourself, just go at your own pace. And we're here for ya, sweetie!
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Laura
Keep it simple!
Edited by LauraSue (09/20/04 01:16 PM)
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Hi Tissy,
Reliv also helps with Fibromyalgia symptoms since I hadn't seen this post when you asked about it before if you're still interested in trying it. If not, no harm. I just thought I'd mention it.
Glad you know what's wrong so you can start feeling better.
Best,
Karen =)
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Sara-Sage
#106875 - 09/19/04 06:08 PM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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I don't know if either of the meds he gave me are for sleep? From what I understand of his instructions, the Effexor is for anxiety and Naproxen is for muscle pain. And I am on my second day of meds (I started them right away yesterday). I think they have to build up in your system? B/C last night I didn't sleep well again. And I don't know how many more nights I can go on like this. I would kill for a good night's sleep right now.  The Effexor seemed to make me drowsy but I still tossed and turned all night and jumped out of bed with a leg cramp.
Thanks for the well wishes!
Christie
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Christie
~Hoping and Praying for Sleep!~
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Thanks for all the feedback and well wishes. I am only on day two of meds. I took my first doses after I got home from Docs yesterday. The Effexor seemed to make me drowsy but I still didn't sleep well throughout the night. But they probably need to build up in my system.
Christie
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Christie
~Hoping and Praying for Sleep!~
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Laura Sue
#106877 - 09/19/04 06:22 PM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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Thanks Laura Sue. I thought it was funny when I saw what he wrote to. Then I kept trying to back track out of the diagnosis. And he told "You can run from this diagnosis, but you can't hide"
I am IBS-D but I am stable now on Heather's diet except for the occassional cheat that sends me in a down spiral.(Yet I continue to do it....mmmmm)  I have had 4 doses of Naproxen so far, (twice daily,started yesterday) and so far no D but I did feel iffy, sort of rumblings today but I took a NuLev and no D. Whew!
My DH sleeps with the TV on and I have complained that I can't get to sleep and that I don't sleep soundly with it on. So he started putting it on a timer for a half hour. Do you think that would really effect my sleep? I know some people can't sleep unless the Tv is on.
I have been to the Fibrohugs website and it explained so much about me. It was amazing! Like why I am always cold,etc. I also referred my family members there so they can understand. But mother thinks I make these things up b/c she ate healthy while she was pregnant with me. I laughed so hard at that I almost peed myself. 
Thanks Again for All Your Help,
Christie
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Christie
~Hoping and Praying for Sleep!~
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Christie, try potassium for the leg cramps. It's a symptom and is called Restless Leg Syndrome.
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Laura
Keep it simple!
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Glad no D so far. My doc started me on Bextra which is another NSAID that's supposed to be much easier on the tummy. But it kicked up my GERD, so he switched me to the Ultracet. Just something to keep in mind for the future, in case the Aleve gives you any problems.
The TV definitely would affect your sleep. That's nice of him to put it on the timer. Another solution that my DH uses is headphones but your DH might have trouble falling asleep with them! Just the flickering light from the TV bothered me, so now I use an eyeshade -- it REALLY helps.
That's funny about your mom. My MIL thinks I make too much of my symptoms and if I'd just go to a museum and get my mind off things I'd be fine!! The miracle cure, right??!!
Glad you liked FibroHugs. Isn't it nice to know you're not alone and you're not crazy? You mentioned the itchy crawly skin. I get that too. Weird!
Hang in there. Like your doctor said, you can run but you can't hide. On the other hand denial is said to be the shock absorber of the soul -- it allows us to let things in a teensy bit at a time rather than overwhelming ourselves!
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Laura
Keep it simple!
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Ok thanks. Maybe it will kick in later one and help you sleep.
I've been up since 4 am (not by choice) so I am dreaming of my bed right now. zzzzz
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Effexor helps fibro because fibro is in part due to a neurotransmitter imbalance, and it helps restore that balance.
Daniel Wallace, MD, author of Making Sense of Fibromyalgia, which is published by the Arthritis Foundation, lists Effexor as being in one of the medication families clearly effective in treating fibromyalgia. Specifically it is an SSRI (selective serotonin reuptake inhibitor) which
"are used to manage the fatigue, congnitve impairment and depression associated with fibromyalgia and can modestly alleviate pain by promoting the release of endorphins. They usually become effective within 2-3 weeks. SSRIs are not habit-forming and contain no narcotics. Also, very low doses are often therapueutic; these doses are much lower than those used for depression. Patients with fibromyalgia are often very sensitive to all types of medication."
However, they are NOT sedating. The release of serotonin actually increases energy. So it's best NOT to take them at night (sorry!!).
Instead you might want to try Benadryl or its generic equivalent as an over the counter sleep aid. Even my doctor and her husband use it. I take two every night two hours before bed. They definitely help me sleep more soundly.
Okay, hope that clarifies it. Sorry for the froggy mixup (RIBBIT!!).
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Laura
Keep it simple!
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Are hives a symptom of fibro? Is there a link with fibro and thyroid disorder? Where have you been doinfg research Christie?
I'm SO HAPPY you finally know what it is! That's wonderful news! *hugs*
I hope this means you will start to feel better really soon! Good for your doc in knowing about fibro and being able to diagnose it. My doc just keeps sending me to specialists...I don't think he wants to see me in his office ever again!
Have a super day...and feel good!
Love,
Ruchie
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Formerly known as Ruchie
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Hypoglycemia, headaches, rashes, GERD, IBS, muscle spasms, ADD, difficulty putting words together, sensitivities to odor, disturbing dreams, ringing in ears, muscle injury, feeling spaced out, light headedeness, poor balance, sleep disturbances, mood changes, anxiety, communication difficulties, spatial disorientation, fatigue, dry mouth, yeast infections, sever pms, weight gain, chronic sinusists, muscle/joint pain...
Linz and Laura Sue, I checked out FibroHugs and their list of symptoms. My list above are the symptoms I have mentioned on their list!  For those of you that have been diagnosed...do you have this many symptoms or more? Should I talk to my doc about fibro? (PLEASE SAY NO!) LOL Let me know what you guys think. As much as I would hate to have fibro...having a diagnosis would be VERY helpful and would be a big step in the right direction towards healing.
Thanks guys!
Love,
Ruchie
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Formerly known as Ruchie
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Christie,
That's hilarious about your doc writing it down just before you said what you thought it might be LOL It's great when you find a doc like that!
FibroHugs is a GREAT site! I've only read the symptom checklist so far...and the letter to normals. Now I'm gonna go check out the letter to fibroes!
I def think your hubby sleeping with the TV on could be causing you probs. I know that even if the computer monitor light is on (you know the teeny tiny green light), I can't fall asleep at night! And when hubby gets up in the morning, even if he doesn't set the alarm (like on the weekends), guess who else gets up? It doesn't take much to wake me up or keep me from falling alseep at night. I often take naps during the day since I'm not working right now. But not everyone has that luxury...and sometimes I can't even fall asleep then (it doesn't happen often...but I do go through insomniac like periods).
In any case...I know flashing lights and noise would totaly keep me up at night! And if I did fall asleep...my sleep would be poor quality (on Shabbos the lights are on in the rest of the house all night and bits of light seep through the door...so I end up waking up from it *sigh*)
I hope this helps a little bit...keep in mind though, everyone is different! You may be ok with the TV on. Hope you guys figure it out...and most importantly, I hope you get the sleep you need vERY SOON!
Good luck!
*hugs*
Ruchie
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Formerly known as Ruchie
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Ruchie, sweetie, it sounds like a possibility. The three main things that would suggest it are:
1. Fatigue, unexplained by other physical or medical causes, experienced on and off for the past year.
2. Waking up tired, which is called non-refreshed sleep (or the "I feel like I got hit by a truck last night" feeling!).
3. Aches and pains all over, both sides of the body, off and on for the past year, with no other obvious cause.
As for whether I have that many symptoms or more,
Hypoglycemia YES, headaches YES, rashes, GERD YES, IBS YES, muscle spasms, ADD, difficulty putting words together YES, sensitivities to odor YES, disturbing dreams, ringing in ears, muscle injury, feeling spaced out YES, light headedeness YES, poor balance YES, sleep disturbances YES, mood changes YES, anxiety YES, communication difficulties YES, spatial disorientation YES, fatigue YES, dry mouth YES, yeast infections, sever pms YES, weight gain, chronic sinusists, muscle/joint pain YES...
One nickname for fibro is "Irritable BODY Syndrome"!!
Yes, Ruchie, sorry but I think you should ask your doctor.
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Laura
Keep it simple!
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I need a TON of sleep! No matter how much I get...4 hours or 12...I never feel refreshed. Is that what you mean by non-refreshed sleep?
Ok, i guess I'll talk to my endochronologist about it tomorrow (do endocrines know about fibro? He's an excellent doc?)
Thanks LS!
P.S. I didn't really think I could have fibro cause my pain is kinda dull and achey not sever or debillitating (sp)...but now that I've read the list if symptoms, well, gee...I guess my list speaks for itself
There's one positive in all of this: If I DO have fibro...I'm in good company and I know some PHENOMENAL people with this disease!  (For every negative, find at least 3 positives!)
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Formerly known as Ruchie
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Hey Ruchie!
#107112 - 09/20/04 05:57 PM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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I was wondering how you are doing? I haven't seen you post in a couple of days. But maybe I just missed them. Did you convince DH into 2nd dog yet? Are you feeling any better?
I think the TV lights do bother me, so I will probably get a mask as Laura Sue suggested but then I have to figure out what to do about sound. I am afraid to wear earplugs I have a 4 and 6 year old and worry something will happen and I won't hear them if they need me.
Hope your feeling better,
Christie
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Christie
~Hoping and Praying for Sleep!~
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I have been researching by search engine. I type "Fibro" into google and then a bunch of related sites come up and I have been sorting through them. I also went to www.fibrohugs.com like Linz suggested, it is a very informative site. Plus my doc was like a walking library of knowledge on the subject which really surprised me. I usually see someone else in the practice but he was taking sick calls on Saturday.
Christie
Christie
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Christie
~Hoping and Praying for Sleep!~
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Ruchie you sound like me. i had a whole list of symptoms they mentioned but my pain isn't severe. Just a mild discomfort. But I have it so you better get checked out. And as another day passes with me not getting sleep I feel worse. Today I found out what the doc meant by a burning sensation in my muscles. I told him no that doesn't happen to me just dull pain. Well never say never. I would never even been diagnosed if Linz hadn't listened to my whining and suggested I get checked out. I was beginning to think all these things were simply related to the IBS and just getting worse even though I am stable.
Good Luck, Get Checked Out by your Doc,
Christie
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Christie
~Hoping and Praying for Sleep!~
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I read my hubby the list of symptoms and he doesn't think it's what I have. I dunno. Right now I am EXHAUSTED even though I got 8 hours of sleep last night and a nap this afternoon. I have the achies in my arms and back...and my neck is achey too. I just want to sleep! But I slept SO MUCH ALREADY........
It sounds to me like fibro is a compilation of all my symptoms wrapped into one. I always shrugged off fibro because it talks about pain and insomnia. My pain is usually dull so I figured it can't be fibro (can you tell I never really looked into it until today?) I guess if you get a lot of sleep, but it's not restful sleep, you would still be tired when you wake up...am I right about that? Could that be why I sleep so mucha nd never feel rested?
I think I will talk to my doc about this tomorrow. It can't hurt right?
I really hope it's not fibro....I'd be running away from the diagnosis too Christie!  But it would be nice to finally have answers to why I'm so sick all the time!
No 2nd dog  Hubby refuses. I was away for a few days for Rosh Hashana. On Rosh Hashana I hurt my knee out of the blue, it was awful! I even woke up a few times with pain in my leg...and the pain in my knee got transferred to my shin. it was so strange! Anyway, I missed synogogue and that was no fun...but at least my knee seems better! I'm still having the sickies and not feeling well in general.....but I haven't given up hope in getting to the bottom of things! One day I WILL figure out what's making me so sick and get better!
Please keep me posted on how you're doing...and how the fibro meds are working out for you. You're such a wonderful person...and you deserve to feel good!
Thanks for writing me back...it means a lot
*hugs*
Ruchie
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Formerly known as Ruchie
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Hi there!
I am on both of those. I have been on Naproxen for about 8 years for cramps and general pains. The Effexor is new to me as of the last 6 weeks or so. So far it has been EXCELLENT! My IBS, anxiety and depression are all in check! No D for 6 weeks!
Good Luck!
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Ruchie
#107189 - 09/21/04 03:55 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Oh, no, not you too! But you do sound like a possible .
Aches are def. part of Fibro. And insomnia is a new thing for me, but I've trouble for ages with sleeping for 12 hours and still feeling tired! THAT'S the non-refreshing sleep that's a classic Fibro symptom. It's where you struggle to get into stage 4 (deep) sleep and then come out of it lots (but don't necessarily wake up properly). If that's your problem than any amount of sleep won't make you feel better. Luckily, that's one of the easiest things with Fibro to treat!
Ask your doc! {{{HUGS}}}
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Ruchie, you're welcome, sweetie! Yes, endocrinologists should know about fibro. Let me know what he says!
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Laura
Keep it simple!
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