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Old 03-20-2009, 06:58 PM #21
ras1256 ras1256 is offline
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Default Hey Erin!

Since I didn't actually have fibromyalgia, I don't know that I am the best to ask about the symptoms, but the rheumatologist knew right away because there are specific points on the body where you can't stand to be touched (I know the chest plate area is one) and those weren't the areas I hurt in, and the pain I had actually got better with pressure.

That's why I get concerned about docs herding us into the classic groups - it may be true for some, but we are individuals and there are unfortunately alot of different syndroms, conditions, diseases, medication reactions, etc. that can cause the pain.

I would have to agree with the neuros on one thing though. In pure MG with no other complication there is no pain. My conditions trade off, kind of, and both cause weakness but they are very different.

My best example is when we were fishing once, I actually forgot I was having MG problems and when a fish hit my line I went to jump up from my chair like I always do to hook it and.....

fell straight over on my face cuz from the hips down, nothing responded! It would've been very embarrassing, but I could just imagine what I looked like as I let out the big grunt on my way down, so I just starting laughing my behind off! That's still one of our family funny fishing stories.

Other times, the pain tells me I'm having problems and I automatically without thinking about it use my hands to push out of a chair.

I'm sure this didn't help much. Sorry.

Quote:
Originally Posted by erinhermes View Post
What r the symptoms of fibromyalgia? My reg dr says that @ 50 mgs I shouldn't have any pain, but I always do........I know it isn't in my head.........

I am so confused!

Any help would be appreciated!

Hope you are doing GREAT today!

Can't wait to hear from you!

Erin
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Old 03-30-2009, 03:47 AM #22
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I don't know if I have MG, but I've been suspecting that my Fibro is a result of the MG (and/or another condition).

And I think because of the Fibro, I am not getting properly diagnosed.

Just my guess, but I feel that MGers with pain are often having the pain due to Fibro. Even if they don't present the classic symptoms that would get them diagnosed with Fibro, I believe they have it in different areas instead of the typical ones. And/or it can be deeper and hidden or it can be more subtle and less detectable.

Last edited by Koala77; 03-30-2009 at 04:29 AM. Reason: Web site removed as per NT guidelines
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Old 03-30-2009, 05:32 PM #23
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Hi, guys. If you don't mind, I think a few clarifications are necessary here!

MG is all about weakness. We don't get enough acetylcholine and our muscles get weak. NO, we don't get pain as a primary symptom. However, we can get pain as a secondary symptom due to a muscle being too weak. If any of you have overdone things, you know your weak muscles can cramp up or spasm. Overuse of muscles causes pain and we MGers definitely quickly overuse our muscles.

Doctors DO NOT know the cause of fibromyalgia. They have some clues but have no definitive answers. It has not been proven to be an autoimmune disease or to be "related" to MG. Fibro may be more sensitive to chemical or hormonal or nutritional changes in the body.

http://www.mayoclinic.com/health/fib...SECTION=causes

There have been some studies lately that show large numbers of people with musculoskeletal pains and aches actually don't have enough vitamin D. It's a very common deficiency.

There's interesting information out there but, again, no clear answers.

http://www.fmaware.org/site/PageServ...e=fibromyalgia
http://www.fmaware.org/site/PageServ...yalgia_science

If a doctor is saying that all MGers get fibro or that the two are related somehow, they haven't done their research.

I don't have fibro. I can't say that I know how it feels. From the descriptions, it's not very fun to live with.

My Mom got fibro when she took hormone replacement therapy. She stopped the drug, then the fibro disappeared.

Exercise is good for anyone. My neuro said exercise in a pool is the best thing for MG. Fewer reps of those rubber band things helps to build strength and not overtax the muscles. Shorter bursts of activity followed by rest is good (with a fan blowing on you so you don't get hot!). Exercise in the summer is obviously harder than in the winter, even when you exercise inside. I get much worse over the summer months.

Like with MG, it's important to get a doctor (usually rheumatologist) who understands what they do know about fibro. The last thing you need is to be confused about what it means to have it.

Does this help or not?

Annie
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Old 07-11-2011, 01:15 PM #24
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Quote:
Originally Posted by redtail View Post
I was just wondering does anyone else who has MG have fibromyalgia.
I went and saw my neuro on Friday(always such a pleasure NOT)
He mentioned my arm and leg pain (as my neuro nurse whom I see had written to him, and had mentioned it in her letter) he asked if I still got it, I said yes, and then he went onto another subject. Today(wednesday) I got the letter he sends to my GP and a cc to me, in it he says "..... a background of generalised muscle ache and pain and fatigue, which is probably a form of fibromyalgia (relationship to MG)." and thats it nothing else, needles to say Im a little confused . I will talk to my neuro nurse, shes wonderful in looking after me and answering all my questions my neuro doesn't have time to answer. But I thought Id see if anyone else has these 2 diseases?!?!?!?
Hi,
I have had Fibromyalgia since 1999. I have had my ups and downs with it but have managed and adjusted to the flair ups and know what I need to do to take care of myself. But in the last 1.5 yrs or so I started having shortness of breath, then came the weakness in my neck, arms and chest. I also started getting very hoarse most all the time and then it started affecting my singing voice. My right eyelid also droops. I just saw my Neuro again today and I am having repeat chest xrays and next week a pulmonary funct. test. I test negative for the anti-bodies which my doctor says about 30% of people do. I had an EMG which also was fine but I told my Dr. that they didn't test the muscles I feel weak in. To me it was a waste of time. My first pulmonary function test was also fine although I do have lung nodules and some infiltrated areas in the lower part of my lungs.
My personal experience tells me that what I am dealing with now is a separate issue and not fibromyalgia. Can one exacerbate the other? I believe it can but I feel it is 2 separate diseases. I am also hypothyroid and so have an immune disease which I've had since the 80's. All of these are interconnected I'm sure but still separate issues. My Dr. said today that he feels the fibromyalgia could be giving me the myasthenic response. Again, I feel it is 2 separate demons. We will know how to proceed he said when I get all the test results back as well as the blood work I also had today. While fibromyalgia is a muscle disorder and causes pain in the muscles, I really did not have much pain at all when the shortness of breath and other symptoms started. I have been on Mestinon early on when I first saw him and then he started me on Prednisone which I took for about 2.5-3 months but developed serious pain and burning in my stomach so he said I have to stop
because it can give me an ulcer so I stopped taking it which I did last thurs. My stomach is still hurting but am taking antacids etc. for it. He feels it will settle down soon. I also got bad charlie horses, puffy face, shaking, bloated stomach. Not so good side effects. I do not want to ever take Prednisone again. Coming off the Prednisone has caused muscle pain. So I feel like I am in a flare up. Hopefully, that will subside once it's all out of my system or it is happening because coming off Prednisone has caused a flare up. Who knows???? I am not sure about you or anyone else that seems to have both but I know how I feel with a flare up of fibromyalgia and I know how I feel with the Myasthenia Gravis. Feel free to contact me or ask any questions. I hope some of what I have said is helpful. Take care, blondieslp
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Old 09-27-2013, 01:11 AM #25
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redtail, I have had fibro for 15 years. I was diagnosed with Myasthenia Gravis Jan. 2013.
I think I had MG for a while before a Neuro would listen.
The fibro and MG seem to play off each other sometimes. Making both worse.
Good luck!
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Old 08-27-2014, 02:45 PM #26
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Default Fibro too

I also have both Fibro and MG and am so tired all the time.
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Old 08-27-2014, 11:27 PM #27
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Quote:
Originally Posted by redtail View Post
I was just wondering does anyone else who has MG have fibromyalgia.
I went and saw my neuro on Friday(always such a pleasure NOT)
He mentioned my arm and leg pain (as my neuro nurse whom I see had written to him, and had mentioned it in her letter) he asked if I still got it, I said yes, and then he went onto another subject. Today(wednesday) I got the letter he sends to my GP and a cc to me, in it he says "..... a background of generalised muscle ache and pain and fatigue, which is probably a form of fibromyalgia (relationship to MG)." and thats it nothing else, needles to say Im a little confused . I will talk to my neuro nurse, shes wonderful in looking after me and answering all my questions my neuro doesn't have time to answer. But I thought Id see if anyone else has these 2 diseases?!?!?!?

I do. My neuro tx /Rx = cymbalta, mestinon, lortab, Valium. Vitamin therapies= turmeric, b-complex, magnesium and zinc, multi-centrum
Symptoms similar to yours, but have severe weakness and pain combined with vision, swallowing, speech, muscular weaknesses daily except for maybe an hour mid day. Time-release mestinon combined with 60 mg mestinon every 3 hrs (not every 6hrs). Allows less potentiation since the fibro and mg aggravate / potentiate each other increasing pain and weakness, etc among other symptoms, and now am having more tardive dyskinesia from mestinon, so Valium and magnesium reduces the side effects of the mestinon. It's requiring more and more mestinon in order to see breathe swallow speak function etc, becoming more resistant. Good luck. I'm fortunate to have a great team of six specialists and therapists who treat this tricky combo. Best.....r-
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Old 08-30-2018, 07:23 PM #28
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Quote:
Originally Posted by wonder View Post
I don't know if I have MG, but I've been suspecting that my Fibro is a result of the MG (and/or another condition).

And I think because of the Fibro, I am not getting properly diagnosed.

Just my guess, but I feel that MGers with pain are often having the pain due to Fibro. Even if they don't present the classic symptoms that would get them diagnosed with Fibro, I believe they have it in different areas instead of the typical ones. And/or it can be deeper and hidden or it can be more subtle and less detectable.
I unfortunately have been diagnosed with both MG and fibromyalgia. I am constantly in pain and I have just been referred to See a physiatrist for rehabilitation.
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Old 02-19-2020, 05:21 AM #29
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Default Fibro yes, now investigating MG

Quote:
Originally Posted by redtail View Post
I was just wondering does anyone else who has MG have fibromyalgia.
I went and saw my neuro on Friday(always such a pleasure NOT)
He mentioned my arm and leg pain (as my neuro nurse whom I see had written to him, and had mentioned it in her letter) he asked if I still got it, I said yes, and then he went onto another subject. Today(wednesday) I got the letter he sends to my GP and a cc to me, in it he says "..... a background of generalised muscle ache and pain and fatigue, which is probably a form of fibromyalgia (relationship to MG)." and thats it nothing else, needles to say Im a little confused . I will talk to my neuro nurse, shes wonderful in looking after me and answering all my questions my neuro doesn't have time to answer. But I thought Id see if anyone else has these 2 diseases?!?!?!?

Fibro diagnosis 2-ish years ago, now investigating MG which I had not heard of until today.
Much reading led me here.

The first symptom that seemed to prick up my Doc's ears concerning MG is how my weakness has seemed to increase as my magnesium use (soaking) for Fibro has increased.
I have not heard of other Fibros who respond so feebly to magnesium. I wake with leg cramps from hades and even while soaking in magnesium I can still get cramps.

Is this common to others with with or both conditions?

I read (but forgot where) that MGers often respon to magnesium with more weakness, so this very standard and often helpful treatment for Fibro may exaccerbate the MG. This mirrors my Doc's concern.

If so, this seems pretty important info for treatment/management plans for both conditions, as well as a potential redflag to take notice of.

That's why I am wondering if any of this is familiar to anyone here, or if it raises any thoughts.

Brand new member and this discussion here is the catalyst to join
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