Just Got Diagnosed With Fibromyalgia

[Mtndog]

Having had Fibromyalgia and beaten it - can offer some tips. Chinese Acupuncture was great. Did wonders.

Also - get Thyroid checked. TSH, Free T3, Free T4, and Antibodies. Its the Antibodies that link it to Celiac. Autoimmune. And to make matters even harder. 10% of people with Hashimotos Thyroid don't show Thyroid Antibodies anyway.

www.stopthethyroidmadness.com explains how there is probably no modern diseases like CFS or FMS - just badly treated or undx low Thyroid. Mine was.

hi Georgie- Welcome and thank you for turning this topic around. With some advice and support!!!!! This thread oroginally started out as a member asking for some advice and support about FMS. Unfortunately, it has turned into a jousting match of research

Let's get back to supporting people who are asking valid questions about their health issues.

Thanks Georgie!

[tiredofdoctors]

Here, here!! Welcome Georgie! I think accupuncture is outstanding. In my field, we aren't supposed to believe in Eastern medicine . . . . ohhhhh nooooo. . . only Western. However, I am such a strong believer in accupuncture because I have seen it work -- over and over and over.

With regard to the Hashimoto's -- boy, are you right! I had a smart-aleck rheumatologist who wanted to "prove" to me that I didn't have it, despite what my endocrinologist said, so he did blood work. I had elevated antibodies . .. .can't remember which . . . but the rheumy said "Those are the antibodies for GRAVES disease, NOT HASHIMOTO'S. AND, they're only MILDLY elevated" Well, my neuro doc pitched a hissy fit when he found out the guy said that. He said that they were NOT MILDLY elevated, they were highly elevated, and even when they get to the high end of normal, it's statistically significant for females. Ends up, after my thyroidectomy, the biopsy was consistent with "long-term, chronic Hashimoto's". I also had numerous hemorrhagic cysts within -- which is what my endocrinologist had actually palpated the new cysts -- even when I was scheduled for surgery whe wanted to see on ultrasound what it looked like -- she SAW the hemorrhages in what she had palpated! Those are what are considered "pre-cancerous". Anyone with suspected FMS or CFS should have a FULL thyroid panel done!!!!!

Also, a daily stretching routine two times per day is a MUST for FMS patients (have I posted this???). Although the physician who coined the term "Fibromyalgia" formally recanted his stand on this, the medical community still recognizes it as a true diagnosis. The thought behind it is that, for whatever reason, the thin, fibrous sheath that surrounds the muscle (looks kind of like a spider-web), becomes very thick and sticky. It then starts sticking to the sheaths of the muscles which surround it. Therefore, when it continues to advance, movement becomes VERY painful. That is why a stretching program is a must. It keeps the muscle sheaths from adhering quite so much, and stretches them out, as well as the muscles.

Additionally, FMS patients should NOT perform a heavy weight-lifting routine. Low weight, high repetition exercises (EXTREMELY low weight), are the type of weight lifting exercises you should do, should you choose.

FMS patients should do a MINIMUM of aerobic exercise 3 times per week. You guys NEED those endorphins! They are HIGHLY recommended.

There is an excellent book by the arthritis foundation. I believe it is called "Living Well with Fibromyalgia". It has some very good advice.

There is also a book written by a physical therapist which is based on Yoga, but in a very gentle way. It is called "Relax and Renew". It is OUTSTANDING. It even has a section for pregnant women.

Enough of the lecture . . . . . !!!!!!!! I'm finished now!!!!!!!!!!

Lynne

[georgie]

MtnDog,Tired of Drs, Thanks for your welcome! TofD ...what do you take now for having no Thyroid ? Its just - that so many people lose the pain once they get onto Armour. I don't really know why - but its must be the extra T1 and T2 and T3 in it.. Not a lot of Drs know how to dose it but if you find one that does ... you could be pain free ! My Antibodies were only slightly elevated too but have horrendous nodules in Thyroid. All looked 'within normal limits' at last scan. Correct thyroid meds should stop thoae attacks and prevent further damage.The acupuncture I had was 10 years ago before I found a good Dr that dx Thyroid. It was Chinese Acupuncture which is all over the body needles - systemic - and cures your whole body - not just a bandaid approach.

[tiredofdoctors]

I absolutely agree with you about the accupuncture -- and encourage you to to continue with that plan! I only take Synthroid . . . but my levels are continuing to bounce up and down a little. The last time I was in the endocrinologist's office, she wanted to lower my dosage, but she was afraid that it would cause my OTHER levels to drop some, and she said that she didn't want to give ANY of the neuro docs a reason to blame all my symptoms on hypothyroidism!!! So, my TSH is probably closer to 1 or 2, so she wants to bump my dosage down so that the TSH will increase a little. I have been SO lucky to find her. She explains the pros and cons of each type of therapy, etc., why I need this med vs. that one, things like that. When she found out that the generic synthroid I was taking contained gluten, she threw a FIT. She was pretty hot that the pharmacy didn't check on that -- and I believe made her point known!

I also had a very nodulous goiter . . . the thing was, it didn't grow OUTWARD, it grew INWARD. So, it grew back, wrapped around my trachea, grew under my breastbone -- I think it was something like out of Alien!!! It was really weird. I had stopped going to her because of some really bad advice, then insurance changes, and the idiot I went to took me off the synthroid because he said you don't take it only to control the size of a goiter. She figures that's when I converted over to Hashimoto's. I ended up in the hospital for depression! My heart rate was between 45-50 and my blood pressure was consistently 90/45. I was SO depressed. My TSH came back at 12.05 -- more than twice the high end of normal. The psychiatrist at the hospital told me "You don't need to be here. This is organic. You need to find a GOOD endocrinologist." I told him who I was seeing, and he repeated, "You need to see a GOOD endocrinologist." I told him about my (now) endocrinologist, and the insurance issues. He told me that it was worth the money to pay cash to go back to her.

I had been back for 9 months. . . . then on one appointment, she palpated my throat and said, "How would you like to have your thyroid removed?" I looked at her and said, "Well, we haven't ever discussed it, so I hadn't really THOUGHT about it." She said, "Well, it needs to come out. Now." The ENT didn't want to remove it, because he didn't know that it was BEHIND my trachea, so he couldn't really FEEL that it was quite so huge. She insisted. Then, about three weeks before my surgery, she had gotten a new ultrasound machine, and she was playing around with it in the office. That was when she said that she REALLY wanted to see what my thyroid looked like -- she said she thought I had hemorrhagic cysts. She was right -- you could see them on the screen. I'm just really lucky that I have a doctor like her.

Good luck with your journey . . . . it sounds, though, like you have a good endocrinologist, too. That makes life a WHOLE lot easier! Take care of you,

Lynne

xxxooo

[georgie]

Lyn, I have a wonderful computer that found me a website.... The Endo I saw was about the worst and have heard that story many times since. $ynthroid - it doesn't work .... Have you ever heard of Armour ? My Dr prescribes it and basically doses to symptoms - not TSH.She tests me Free T3 and Free T4 and lets them get OVER range as that is the best way to make a person well. The TSH is meaningless once you have Hashis and as you can now know - it didn't reduce your Goitre at all. Armour would have ..... Armour also reduces cholesterol, Blood Pressure, Blood sugar, prevents Osteoporous. See why old fashioned Endos like yours don't prescribe it ? They would be out of a job !

www.stopthethyroidmadness.com

The new range for Tsh is 0.5 - 3.3 BTW. And may soon be 0.5 - 2.0. Your Endo even has that wrong. Do some research ... just for your future....

[LKelly8]

I had a smart-aleck rheumatologist. . . Ends up, after my thyroidectomy, the biopsy was consistent with "long-term, chronic Hashimoto's". . .

Grrr Arrogant rheumys. I hope you made copies of that biopsy report and wallpapered his office with it.

What do you call two rheumatologists looking at an EKG?

A double blind study.

Hee hee.

[Canadian Karen]

Lyn, I have a wonderful computer that found me a website.... The Endo I saw was about the worst and have heard that story many times since. $ynthroid - it doesn't work .... Have you ever heard of Armour ? My Dr prescribes it and basically doses to symptoms - not TSH.She tests me Free T3 and Free T4 and lets them get OVER range as that is the best way to make a person well. The TSH is meaningless once you have Hashis and as you can now know - it didn't reduce your Goitre at all. Armour would have ..... Armour also reduces cholesterol, Blood Pressure, Blood sugar, prevents Osteoporous. See why old fashioned Endos like yours don't prescribe it ? They would be out of a job !

www.stopthethyroidmadness.com

The new range for Tsh is 0.5 - 3.3 BTW. And may soon be 0.5 - 2.0. Your Endo even has that wrong. Do some research ... just for your future....

Excellent website, Georgie!

I am really starting to believe that adrenal exhaustion is a big part of my problem with regards to my chronic fatigue and exhaustion. I of course had always assume it was solely due to the malabsorption issues of the celiac diseaes. Also, the Eltroxin (0.15 mg) that I am on is obviously not getting my hypothyroidism in check.

After doing some checking around up here in Canada, I found these products:

Open Original Shared Link

Open Original Shared Link

I have confirmed their gluten-free status already.

I know you have done extensive research on this. Could you take a look and see if these products are something that would improve my adrenal and thyroid function?

Thanks!

Karen (who is desperate for answers)

[mythreesuns]

Thanks so much for bringing the topic back to fibromyalgia.

Having had Fibromyalgia and beaten it - can offer some tips. Chinese Acupuncture was great. Did wonders.

Also - get Thyroid checked. TSH, Free T3, Free T4, and Antibodies. Its the Antibodies that link it to Celiac. Autoimmune. And to make matters even harder. 10% of people with Hashimotos Thyroid don't show Thyroid Antibodies anyway.

www.stopthethyroidmadness.com explains how there is probably no modern diseases like CFS or FMS - just badly treated or undx low Thyroid. Mine was.

I have had my thyroid checked both times I had blood work done, so I really don't think it's that. Thanks for the tip!

[Mtndog]

Thanks so much for bringing the topic back to fibromyalgia.

I have had my thyroid checked both times I had blood work done, so I really don't think it's that. Thanks for the tip!

You know, it's so weird, I've had my thyroid checked a gazillion times and it ALWAYS comes back normal. But I'm NOT convinced. I feel like they're missing something. Either that or it's a subclinical problem.

[CarlaB]

You know, it's so weird, I've had my thyroid checked a gazillion times and it ALWAYS comes back normal. But I'm NOT convinced. I feel like they're missing something. Either that or it's a subclinical problem.

Dr. Broda Barnes thought that temperature was a more accurate measure of thyroid. The posted website has info on it, or you can google Dr. Broda Barnes. I saw this over and over when I taught NFP and invariably the woman felt better either with thyroid or with some iodine (often it was a person who didn't use iodized salt).

[Canadian Karen]

This link is interesting. It even lists gluten intolerance as a contributing factor of adrenal fatigue:

Open Original Shared Link

Karen

[tiredofdoctors]

Karen -- with regard to your thyroid, you can have "normal" numbers and STILL have an autoimmune disease. It wasn't until mine almost STOPPED working (with that jerk of a doctor after he took me OFF the synthroid) that I was diagnosed with Hashimoto's. When I went BACK to my regular endocrinologist, she did mention that she didn't know if just Synthroid was going to take care of it. My levels were all over the board -- up too high, then down too low . . . we just couldn't get a handle on what was happening with it.

I DID have some adrenal fatigue. I took DHEA because my cortisol levels were high and my DHEA levels were low (there is an inverse relationship to those). It CERTAINLY made me feel much better. I didn't have what I thought were "anxiety attacks", and I didn't have those times that I would fall asleep at stoplights.

I also tried the Rhodiola comlex. THAT was a disaster for me. It was as if I had finished an entire pot of coffee. . . I was jittery, I had a headache, I felt AWFUL . . . . I took it for about three weeks, thinking I'd "give it a chance" because my primary doc at that time felt I needed it . . . I NEVER got used to it. My heart did flip-flops all day long when I took that stuff! You might have a different reaction to it, so I wouldn't count it out, but I had a pretty bad one.

I haven't tried the Armour thyroid medication, but I haven't had any difficulty with the Synthroid. I guess in this case, my thought is, "if it ain't broke, don't fix it". I know that the Armour has worked for a LOT of people. I guess, too, some of the benefits of it would actually be detriments for me. I have hypoglycemia most of the time, I have low blood pressure (although after I fell trying to transfer from a chair to my wheelchair yesterday at the doctor's)

Call me about the Hashimoto's . . . . we'll tawwwwlk (as in cawfeee tawwwlk! -- gotta love that Canadian, Mike Meyers!!!)

Wuv You,

Lynne

[Canadian Karen]

My thyroid numbers frequently go out of whack and my Eltroxin often needs to be upped or lowered. I go again for my annual physical with my family doctor on October 16th, so we'll see how that goes. I have started taking the ThyroSense and AdrenaSense yesterday, so I am not sure if they will have an effect on my thyroid numbers or not....??

All I know is a whole bunch of lightbulbs went off when I was reading up on adrenal fatigue, heck, I could be a poster girl for it!!! And I'm usually not one to jump on the "Oh, I think this might be what is wrong with me" bandwagon....... but this just sounds SOOOOO exactly what is what happening to me. Of course, it's not the cause of me being diagnosed "Refractory Celiac Sprue", but I do believe it is why I have had such a drastic decline in the last 6 months......

Hugs!

Karen

[Guest Robbin]

I have FM/MPS, and I agree with Lynne, the arthritis foundation book is excellent. I highly recommend the books by Dr. Devin Starlanyl-I believe there is a website, maybe google her name--She has FM/MPS too and her book on FM saved my sanity when I was first dx'd. I am so sorry you have to go through this too. I always am saddened when I hear of someone being dx'd with this--my doctor told me that "It won't kill you, but some days you will wish it would." How is that for support and guidance?! Believe me, since going gluten-free, the symptoms have lessened, and the tips that Lynne and others have given, plus the tips in the literature out there will make life easier, and you will reach a point where you find a treatment that works for you. It just takes a lot of experimenting sometimes. Take care.

[CarlaB]

Karen, that's a site I came across for adrenal fatigue, too. It's a good one. I also feel like it's a fit for my symptoms, and the recommendations for fixing it could help anyone!

I had a hair analysis done by my doc through Analytical Research Labs., Inc. It told me a lot of what my body is doing so that my supplement program could be designed specifically for me. Hubby also bought me a far infrared sauna because most of the websites I read thought far infrared sauna therapy was a big help ... I'll do almost anything to get better!

[mythreesuns]

Dr. Broda Barnes thought that temperature was a more accurate measure of thyroid. The posted website has info on it, or you can google Dr. Broda Barnes. I saw this over and over when I taught NFP and invariably the woman felt better either with thyroid or with some iodine (often it was a person who didn't use iodized salt).

Interesting.....specifically what about the temperature would tell you something about the thyroid?

I have had over the years periods of time (a week or more, up to a month) where my temperature was consistently about 95 degrees. That's also when I first got Reynaud's and they checked my thyroid.

It's generally been normal the last several months, with the exception of a few days a couple of weeks ago. I didn't actually measure my temp then, but I did get that same feeling as I did when my temp was low.

When I get the chance (work has been crazy) I'll check out the info on the web.

I have FM/MPS, and I agree with Lynne, the arthritis foundation book is excellent. I highly recommend the books by Dr. Devin Starlanyl-I believe there is a website, maybe google her name--She has FM/MPS too and her book on FM saved my sanity when I was first dx'd. I am so sorry you have to go through this too. I always am saddened when I hear of someone being dx'd with this--my doctor told me that "It won't kill you, but some days you will wish it would." How is that for support and guidance?! Believe me, since going gluten-free, the symptoms have lessened, and the tips that Lynne and others have given, plus the tips in the literature out there will make life easier, and you will reach a point where you find a treatment that works for you. It just takes a lot of experimenting sometimes. Take care.

Thanks so much for the support. I will definitely check out that book when I get a chance!

[CarlaB]

Toni, Dr. Barnes theory was if the basal temp. -- meaning first thing in the morning, and for a woman it needs to be during the first 15 days of your cycle, day 1 being first day of menstruation -- was lower than 97.8 that your thyroid was low, possibly subclinically low. In teaching natural family planning for 7 years, I personally think 97.5 or lower is too low. People with higher temps. than that always seemed to feel fine. If it was lower than that, most of the time it was someone who did not use iodized salt and merely adding salt or taking kelp helped them dramatically.

My temps used to be low, and I take a thryoid supplemement that contains glandular thyroid that I get from the health food store. Kelp was not enough to bring my temps up. I never had my thyroid tested by a doc until my gluten problems, but at that point I had taken the glandular for years and all my tests were normal.

I am finding now that it's important to have a balance with the adrenals as well. Read the link Karen posted about adrenal fatigue. The adrenals and the thryoid work together, so if your adrenals are weak, it won't matter much if you're taking thyroid or not. In fact, it can be counter-productive.

Like so much else, subclinical low thyroid and subclinical low adrenals won't be important to your doctor.

[mythreesuns]

Wow, you guys are going to keep my busy for days looking at all the links!

Thanks so much

Toni, Dr. Barnes theory was if the basal temp. -- meaning first thing in the morning, and for a woman it needs to be during the first 15 days of your cycle, day 1 being first day of menstruation -- was lower than 97.8 that your thyroid was low, possibly subclinically low. In teaching natural family planning for 7 years, I personally think 97.5 or lower is too low.

When I was ttc around 3-4 years ago, my basal temp hovered around the upper 97's. Interesting...

[CarlaB]

Wow, you guys are going to keep my busy for days looking at all the links!

Thanks so much

When I was ttc around 3-4 years ago, my basal temp hovered around the upper 97's. Interesting...

Was that before the temp. shift, or after? If before, that's good, if after, you were probably too low.

[Ursa Major]

My waking up temperature is only 95.54 Fahrenheit (35.3 Celsius), and within an hour climbs to 97.34 F (36.3 C) every day. When I have a 'normal' temperature, it's because I am sick, and I feel dreadful.

[CarlaB]

My waking up temperature is only 95.54 Fahrenheit (35.3 Celsius), and within an hour climbs to 97.34 F (36.3 C) every day. When I have a 'normal' temperature, it's because I am sick, and I feel dreadful.

You will probably see improvement as your adrenals get stronger. The reason you feel ill at a higher temp is because that is a fever for you .... if that was your normal temp it would feel fine and you'd have more energy. I think your low temperature is another confirmation of your adrenal fatigue ... but that's just my opinion.

[Ursa Major]

Thanks, Carla, I agree with you. I am waiting for more bloodwork to come in today, I am seeing my naturopath this afternoon. I had four vials of blood taken last Friday, and the lab didn't do all the ordered bloodwork, due to 'insufficient blood'. So, had to go back in on Tuesday to have more taken to do the FSH, Free T4, vitamin B12 and vitamin D.

This far I think almost everything looks okay, except my white blood cell count is on the very low end of normal. Normal is 4 to 11, and mine is 4.2. I read that low normal is often indicative of an autoimmune disease. Lovely.

These past days I've had some very strange episodes of feeling like I was leaving and going to a different dimension. Like a strange brain spasm, impossible to explain. As if time stops and doesn't matter anymore. Maybe I am close to leaving, it sure feels that way.

[CarlaB]

Ursula, I hope you're feeling better soon. I still have all the fatigue, but a lot of the brain fog type issues are leaving. It's still foggy, but I am actually able to read a bit more than I was, and I'm doing fine at the grocery, which used to stress me out and disorient me -- once so bad I had to call Adam. I hope your naturopath has some answers for you.

[Ursa Major]

Carla, it isn't brainfog, I've had that forever. It's something entirely different, something very weird.

[Jestgar]

Kinda OT

I just finished breezing through this whole thread including the obnoxious stuff in the beginning and I just wanted to point out that you guys kick butt!