Hi Jan,
In this post about Fibromyalgia, you mentioned the muscle soreness that we can get from overtaxing our muscles. I believe somewhere you also mention that thyroid problems can cause leg pain. My legs have been aching for almost 4 weeks now. I noticed that they became worse while on vacation this past week when I walked much more than I normally would. When I finally took Tylenol, the ache did go away for a day or so. I do have a multinodule goiter, but the endocrinologist claims my TSH levels are normal. If it's a case of overtaxing my leg muscles, is there something I can do besides take Tylenol?
Thanks, Jan.
Mary

Type of Myotonia: Thomsens

Country: USA

Mary,

A multinodule goiter can cause hyper or hypothyroidism depending on the cause. If your TSH is within normal range then it's probably not an autoimmune issue (which they usually treat with radiation).

Doctors used to treat simple goiters with potassium iodide (SSKI). It was prescribed for me once when I was young and cured the goiter but my myotonia was horrendous because of the potassium. They now have a warning on the labels of potassium iodide products about myotonia. There are other sources of iodine that are fine like kelp.

Have you seen an endocrinologist? There are so many more tests that can be done to help with an exact diagnosis. If my TSH gets over 2 I really feel the difference in the myotonia even though that's within the acceptable range of .3 to 3.

One of the best ways to tell if the goiter is from low thyroid is to monitor your temperature for a week or so. Mine tends to stay about 97.5 to 98 even with thyroid medication. Without it I drop down into the 96 range. I don't know if it's the cooler body temperature that makes myotonia worse with hypothyroid or if it's the diminished action of the sodium-potassium pump in the cells.

When I first started taking thyroid in the 80s my tests were normal, but a cousin with myotonia saw a big difference in her stiffness when she started taking it so I asked my doctor if I could have a trial of a low dose (1 grain). It was dramatic for me and that's the dose I still take. Even though it's considered low, if I just miss a few days I have trouble walking and my tongue gets so stiff I sound like I'm drunk.

I don't think it will help everyone with MC across the board...I had another cousin who tried it and saw no difference at all. But it could be important for some of us who are low normal or have lower body temperatures.

Your soreness was probably from the extra walking and maybe the onset of colder weather if the Tylenol helped. I don't tolerate any painkillers but if you can keep inflammation down after exercise (even normal people) by using something like Tylenol or Ibuprofen then it should help with the post-exertional soreness.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Went to my PCP today, and he spent 2 1/2 HOURS with me, talking to me about my life, symptoms, the pros and cons of a FM diagnosis, God, prioritizing your life's goals and focuses, the evils of politics in medicine..... (I LOVE my doc - he's so eccentric, rogue and genius) - anyway, he agrees that I do meet the criteria for the rather vague and subjective symptoms of fibromyalgia, and has ordered some tests, and a referral to a rheumatologist, to confirm.

This is the best outcome I could have hoped for - just to finally have some better handle on the pain, weakness, exhaustion, fogginess I've been dealing with for the last year+, above and beyond what I've lived with for my life. I don't intend to take any of the meds they seem to want to prescribe for it- I'd like a little therapy (I can't tolerate a lot), an exercise program, and maybe some homeopathics or herbs.

Anyway, thanks to you guys for opening my closed and dense eyes - sometimes I can just stand in front of a neon sign, and not notice it!!!

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Yeah! It's so great when you find a doctor like that. I hope someday there's a more definitive diagnostic protocol for fibromyalgia, but at least it's becoming recognized.

My rheumatologist seems to think that it has a lot to do with either an injury or illness that damages the brain's ability to filter out pain signals. Even with all the weird genetic conditions I have I never had severe pain till I got West Nile Virus and encephalitis. Almost everyone I know with chronic fatigue syndrome also has fibromyalgia, and they just came out with that study correlating CFS with a chronic viral infection, so it makes sense to me.

I use the homeopathics Arnica and Rhus Tox almost every day and they really do help me a lot. Some people seem to respond better to homeopathics than others, and some seem to do best with herbs. Did you ask him about thyroid? Taking natural thyroid (Armour) was the only thing that really made a difference for my husband...he has myofascial pain syndrome which is similar to fibromyalgia.

Hope your rheumatologist is helpful - wish I could share mine with everyone!

Jan

Type of Myotonia: Thomsen's MC

Country: US

Thanks Jan - Jim seems to feel that the rheum he's referring me to is a good doc and a good person - and I trust his opinion.

He did say that FM, CFS and MFPS are sort of 3 overlapping diagnoses, where one can have just one, but often seem to have the symptoms of 2 or all 3. Since they are syndromes, and not yet actual firm diagnoses, it really is so subjective.

I will add the rhus tox to my homeopathics - I'm already taking an arnica formulation for my palpitations. I intend to decline any sort of drug she might suggest, as I really don't want to add to that! But I do wish I could find natural things for sleep - my sleep disorder is so severe that I have not found ANY herb or homeopathic formulation that is effective, so have to take sleeping pills! Have even tried simple sleep deprivation, for sleep as result of exhaustion - doesn't work - I drift off, but wake up after 5-10 minutes. I even dream in that time, but I am aware that I'm dreaming!

Anyway, off subject. I'll let you know what she says, whenever I get to see her. Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Lois:

Have you been tested for sleep apnea?

Your brain might be jolting you awake if it realizes you're not breathing. Or maybe there are subtle noises that are waking you up as you're falling asleep. That happens to me sometimes.

Type of Myotonia: Becker

Jan - I realized that the arthritis homeopathic formula I've been taking does have rhus tox in it (duh), so I have been taking it. I do think that the 3 (Traumeel, arthritis, calming) that I take are moderately effective. I also think that, having had a really high pain threshold all my life, the fact that I am pretty unhappily in pain means that either the pain is increasing, or my tolerance and acceptance is diminishing. Either way, something has changed, though I remain fairly stoic about pain.

Jenna - thanks - I am very overweight, and I believe I do have mild sleep apnea. I also have delicate sinuses, that fill or inflame at the drop of a hat. Besides that, there is an enormous amount of ambient noise in our bedroom, and on top of it, we superimpose nature sounds at night, plus a white noise fan - my husband feels the need for all this. There is also a lot of light in our room. None of it is ideal sleep environment, but I don't see it changing any time soon. And we have 3 large dogs in the room with us, and their habits also contribute to the cacaphony. It's no wonder I don't sleep!! LOL!
Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

I have two friends with fibromyalgia who go to two different doctors. Both their doctors told them the principal underlying cause for fibromyalgia was lack of REM sleep.

Hi,

It has been a long time since I opened this website. I have fibromyalgia and Thomsen myotonia. Pain and fatigue caused me to quit my job in February '08. My pain is now 80% under control with a new drug used only for fibromyalgia. It is Savella. It has been over 6 months since I had any symptoms of myotonia. I hope this encourages someone to try this medication. Side effects of Lyrica caused me to switch medication. Hope this helps you.

Type of Myotonia: Thomsen's

Country: U.S.

Thanks, Judy - I'll look this up - my appointment isn't until mid-December, and I'm not into taking medications if at all possible, but we'll see! This past week, I've wished for full-body paraffin soaks a few times!! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA