Hypo and fibromyalgia
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| Wed, 11-24-2004 - 8:36am |
I noticed a couple of people talking on this board and on the fibromyalgia board about a connection between fibromyalgia and hypothyroid. I was hoping to get more information from some of the people here who may be dealing with both or just more information.
I posted a message on the pain issues support board a few days ago because I've been in lots of pain lately. I feel like I have the flu (whole body aches) but I'm not sick (no fever, no headaches, etc). I know my thyroid levels need checked again and I have an appointment for that in two weeks but I have more symptoms than just the hypo stuff. Anyway, someone over there suggested I read up on fibromyalgia and talk to my doctor about it. I did some reading and seem to have many of the symptoms. But now I'm scared...I don't want to be some kind of freak hypochondriac with all these "syndromes" and "conditions" that doctors refuse to really understand/treat/care about.
I'm tired of feeling like this and want to try to make myself better...I would like to start exercising and stuff but I feel like I ran a triathalon yesterday and all I did was come to work!
I'm very interested to hear from any of you who have fibromyalgia and hypo...how you deal with the pain, what you have learned, etc.
Thanks in advance to all of you...and I'm sorry this message seems kinda negative.
dazed

Hi Dazed...
I've had Fibro now for 12 years and just recently started researching Hypo. I am finding more an dmore info linking the two as well.
Fibro is a scary thing. Debilitating fatigue, brain fog, full body pain. It can immobilize you. I know, it did that to me. FOr 2 years I could not work. The most challenging part of it all for me was, and still is, what seems to be the "stigmatism" associated with Fibro, the thought by some that its "all in the head" and that its just a case of "mind over matter". I had a doctor once who actually told me that we "all have a certain amount of fatigue and muscle aches"... needless to say I never went back to him.
I've tried everything for the Fibro, everything that was recommended and in all my 12 years of experimenting, I found absolutely nothing. Seriously. Nothing. And I've spent tons on prescription drugs and OTC meds. The best thing for me it to try and rest as much as possible and focus on just getting through the day.
As for the thyroid/hypo connection... I'm sorry I can help much with that. Other than to tell you, for ME, there is a connection. I believe that I have BOTH.
I'm gonna scoot over to the Fibro board myself... its been SOOO long since I've been there... hopefully together we'll get some answers.
Feel better soon sweetie, keep your chin up. We're here for you!
marley,
Thank you so much for your response. I'm just so unsure of what is happening to me. I try to be "smart" and not try to diagnose myself on stuff I read on the internet, but sometimes that's hard.
I think the most frustrating thing for me is that 2 years ago I had lost a bunch of weight, was incredibly active, and felt better than I had in years. And here it is, two years later and I feel like I'm falling apart. I'm not normally a very negative person, but I think I'm just tired of pretending I feel good.
I'm lucky because my aches and pains have not kept me out of work. Okay, mostly because I'm at a new job and don't really have any time to take...but even if I did, I probably wouldn't be taking much time off...maybe a day just to catch up on rest. I'm just so darn tired all the time. Even after about 11 hours of sleep I can only last about 4 or 5 hours before I feel exhausted again.
You are so right about the "stigmatism" associated with either of these conditions. And part of that is what I'm afraid of too. I know it's not in my head...but I'm not sure how receptive my doctor is going to be about checking/diagnosing fibro if that is indeed what I have.
I see my doc in two weeks (and I can't wait! Which is really weird for me! LOL!)...maybe we can find some answers together. These conditions are so similar, I think that's what's so telling for me...like you, I'm begining to think I have both.
The only thing that has helped me so far is ultram. I was given a prescription for it for my back and I find myself taking it once a day just to get me through work. I don't take it on the weekends much, just if I have lots to do outside of the house.
Again, I just want to thank you for responding...just knowing there is someone to talk to who maybe has tried something once or something, you know?
Have you had your thyroid checked? Are they saying it's normal even though you still have symptoms? I hope you get some resolution on that situation.
I'll keep an eye out for you here and on the fibro board...hopefully we can both find some answers!
dazed
Dazed
Co-CL Carpal Tunnel Syndrome Board
Co-CL Dogs Board
Your welcome Sweetie.
Your so right about it being so good to have someone to talk to who has "been there". Thats the beauty of these boards.
It really IS hard not to self diagnose... especially when you've gone so long (years in my case) without releif or any sign of it. I find that I go in "spurts"... I only have the energy to be "proactive" for so long... then it seems Iget discouraged and give up. I have been through it all.. sleep studies (2 actually), bone scan, aquatic arthritis programs (for the fibro not arthrits), pain management course, been treated with elivil, amitryptilene, celebrex, voltaren, and even oxycodone for pain releif. I've been to a naturopath, message therapy, chiropractor. I've even had an MRI to rule out MS. Sigh...
Sadly enough, no one... countless doctors and specialists, has EVER (in 12 YEARS)been able to tell me what is happening, nevermind assist with the symptoms.
My fibro started with simple tireness and muscle/back/neck pain. Then a RM (rhuematologist)checked me for the classic fibro tenderpoints. He found 18/21. From there the rest is history. I have Fibro. Or at least thats what THEY call it. The endless fatigue, non restorative sleep, brain fog, full body muscle pain.
Anyhow, enough about me. What symptoms of Fibro are you having and how have you related it to possible thyroid? You're in the midst of being tested for both?
The reason I'm HERE and not at the Fibro board is that Ibelieve that I've "crossed over" (if you will)from having "just fibro" to having something way more than that. I dont mean to minimize Fibro by NO MEANS, trust me I've had BAD times with it in my 12 years... but this fatigue and "spacey ness" not feeling "focused" is really something different all together. Very different even from the days when Fibro kept me from working.
I am hoping that by hanging around the thyroid board I can gain some insight into the disease and that, hopefully will help me in getting better treatment.
Its really nice to chat with someone who's fighting the same battles. Looking forward to getting to know you (and everyone here) better.
Love, Marley
Wow, you have been through a lot of tests and treatments. I've been thinking of trying some of them (massage therapy, a membership at a local gym to use some of their equipment, buyin a hot tub, etc) all in the hopes of getting some relief. The only medication I've been using is the ultram, which, like I said, was prescribed for my back (I have two herniated discs). It does seem to work temporarily, it doesn't really help the fatigue, but the pain is significantly better, and the opiate base seems to have the wonderful side effect of making me kinda giddy and happy!
I was diagnosed with hypothyroid almost a year ago. I went to the doctor to get a confirmation that I had carpal tunnel syndrome. He also checked my thyroid because the symptoms of carpal tunnel are one of the symptoms for hypo. He also sent me for an EMG to see what stage the CTS was. He got my thyroid tests back and they were kinda through the roof. So he started me on synthroid. And I've been taking it ever since. I never knew to ask him about the levels or ask for a FULL thyroid panel to determine what the "cause" of my hypothyroidism was (auto-immune or not). But I will this time!
When I was diagnosed with hypo, I was shocked. It was only after getting the diagnosis that I realized I had some of the symptoms. But I don't think I have the brain fog thing (LOL, that sounds funny doesn't it?), but I was cold and had some "attitude" problems, and there were a few other symptoms. I was also VERY stressed at my job so I attributed alot to that.
I had surgery for carpal tunnel in May and THAT pain/problem is gone now.
Several weeks ago I posted a message here asking about hypo possibly being a "cause" of irritable bowel syndrome. I had been having "stomach" problems for a few weeks and attributed it to stress, but that wasn't enough, you know? Then it went away for awhile...and came back. This symptom isn't on the hypo list, but it is on fibro's.
Lately (the past three weeks or so) I've noticed that my whole body aches like I have the flu. Now, some of the aches can be associated with hypo, but not like this. EVERYTHING aches. Another symptom of fibro.
The last symptom is the total exhaustion. Like I said, I can sleep for 10-12 hours and be tired again in about 5 hours (or right in the middle of the work day!). When I get home at night, if I sit to watch a movie or tv program I fall asleep within the hour. It's not the "sluggishness" of hypo, it's more than that
I'm not sure, but I think these three things are more than just the hypo...and while I know that even with treatment some of the hypo symptoms can still be there when you don't have enough of the thyroid hormone for your body...this is more intense and more debillitating.
I don't know what my thyroid levels are, and I'm not sure if I'll have to fight with my doc for "correct" treatment. Sometimes I think he will listen if I show him reports/studies I've found, but then I remember how he wouldn't give me more pain pills last year (for my back) because I had taken 50 pills in 60 days and he said he was concerned I was becoming addicted. So who knows? I don't want to switch doctors because I generally won't go to one unless I am so sick that nothing else will help. I don't really have that option now. Plus, I believe that a doctor who is familiar with your WHOLE history can more readily find "links" to things.
So...that's it, I guess...I just have to wait another 10 days or so to see what happens.
I think it's kinda funny that you feel as though your symptoms are more "intense" because of possible hypo, and I feel like my symptoms are more "intense" because of possible fibro...maybe it's because you've had to deal with fibro for so long (and I haven't until recently) and I've been dealing with hypo for a little while (and you haven't been able to get a fair diagnosis)...
Do you think the fatigue is more related to hypo than fibro? And the brain fog thing, I've noticed it as a symptom for both...do you think it's worse with hypo? I'm trying to maybe more clearly understand the symptoms of fibro...the symptoms for both of these conditions are SOOOO similar with only one or two exceptions.
Well, I noticed your post about seeing your doc with the thyroid results...it sounds like your doc is at least LISTENING (and IMO that's a START). I wonder if you've tried seeing and endocrinologist? They are the specialists when it comes to thyroid issues. Perhaps your rheumatologist or your ob/gyn can refer you if you haven't seen one yet.
I would tend to agree with you that if fibro tends to exaggerate symptoms, then perhaps your thyroid level (although in the "normal" range) isn't good for YOU. I don't understand why docs can't just prescribe a low dose of thyroid meds, just to see if it helps. It's not like these medications have any terrible side effects! The worst side effect you would have is possibly some heart racing, sweating, feeling jumpy, and other symptoms of HYPERthyroid...all of which would be obvious enough to let you know there was a problem! AAAAHHHHHHRRRRRGGGG! Boy, I feel your frustration!
The only thing I can think of for a suggestion now is to do what they say...they kind of have us all at a disadvantage. Perhaps a new rheumatologist, or a new endo, or a more "enlightened" ob/gyn can lead you to a new treatment, or a new revelation somehow.
OH! And I found this in a message on the fibro board, have you tried this person?
<FibroBetsy@rcn.com>>
Okay, this message is getting long enough...talk to you again soon!
dazed
Edited 11/26/2004 9:59 am ET ET by dazednconfused2002
Dazed
Co-CL Carpal Tunnel Syndrome Board
Co-CL Dogs Board
Dazed,
I feel like we're soul sisters!:O) Reading your most recent post was like reading a note to myself in my journal. WOW.
Yes, I've been down the fibro "road" and have had a ton of tests. Nothing EVER comes back with any other explanation other than "fibro". Which I have recently started to believe has truly become a "catch all" for the medical field.
I just could never accept the fact that they cant do ANYTHING for it. And even the things that they claim DO help, never did for me. Its been a long road sweetie.
I've tried Ultram.. but only for a very short time. I stopped taking it for the same reason I stopped taking everything else, it didnt help. Thats the thing nothing seems to help!
As for what I think about the Fibro/thyroid connection when it comes to fatigue.. well... funny thing is... when I read what you said about the fatigue not being the "sluggishness" of thyroid it blew me away.. thats exactly what I said to my doc yesterday.. only I said it about the fibro. I said to him, "I know my body better than anyone, this fatigue is not my typical "fibro fatigue" its something very different". Can you believe that.
Here I am with fibro believing its thyroid, and there you are being treated for thyroid and suspecting Fibro... oh... my dear... do we have alot to talk about!
Let me tell you a little about what I've learned about Fibro and the its symptoms. First and foremost... do you have any Fibro tenderpoints? If you havent already been checked by a rhuematologist then I'd suggest that you get there. A good RM can poke those tender points exactly in the right spots.. and if they're there... you'll jump. You cant "not jump" when the tender points are isolated. Here's a link showing the classic tender points of Fibro..
http://www.fmpartnership.org/tender_points.htm
I think that if you already HAVE hypo and you think you also have Fibro.. then its a combination of BOTH making the fatigue and brain fog unbearable. I'm going through the same thing...
I've never heard of Betsy.. and at this point I dont wanna deal with Fibro docs. I do however want to be referred to an Endo... I'm working on that.
I think, dazed, that you have to keep doing what you've been doing. Keep posting and asking questions... it could very well be that we both have both... and together hopefully we'll be able to help each other through...
Keep me posted... see if you can get referred to a rhuematologist...
I'll check in later... have a nice night!
Love, Mar