1st myasthenia gravis now fibromyalgia??

[redtail]

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: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?!?!?!?

[fibroblogger]

Greetings,
Thanks so much for posting the question about the link between MG and Fibromyalgia. I was diagnosed with fibromyalgia about a year ago. In January I started having some blurred vision as well as muscle fatigue after I stopped taking prescribed medications. Because of your post I think I'll contact my neurologists. i have been having migraines for a number of years, however they recently stopped (not sure why). I have experienced significant brain fog - perhaps there is a connection that may mean that many patients should see their neurologist along with the rhumatologist.

tk

[rumpled]

I am only in the process on getting diagnosed with MG but I was diagnosed with fibromyalgia many years ago.
Studys say that autoimmune disease comes in packs and they both are considered to be one. If my MG comes as a positive - which my neuro says yes but I want another opinion - it would be my fifth autoimmune disease.
But from my research, many docs do not consider that MG causes pain... while it seems that many with MG do seem to suffer with it. I have no idea if it is a separate issue - i.e. fibromyalgia - or is the aches associated with MG.
There are supposed to be specific pain points associated with fibromyalgia. So for a formal diagnosis, my rheumatologist documented the pain with those points and did blood tests. Hope this helps.

[redtail]

thanx for your replies, am to exhuasted to reply properly now, but I will soon.

[redtail]

Hi again
went and saw my GP today, on an unrelated topic, and mentioned the letter from the neuro, he said maybe he was waiting to see how things panned out over the next few months, which is strange because Ive had this pain for a few years now, so I guess a few more months wont hurt, much.
Will keep you informed of how things go.

[bluestone]

Hi Redtail
I have generalized myasthenia and fibromyalgia. 1st fibromyalgia, from the last 10 years. Started to treat MG last year.
Bluestone

[babsg29]

I had Mg for 2 yr then diag with fibro.......now on my 3rd yr with Mg and into my 2nd with fibro..........my RA said it is linked

[loisba]

I've never been diagnosed with fibromyalgia, but I do have pains and aches with my MG. My original neuro, more than 30 years ago, who was an MG specialist, and ahead of his time, recognized pain as being a symptom of MG, but not of what he called classical MG. Most neuro's buy into the no pain with MG mentality, though in the very little research that has been done on it, many MGers report pain with their MG. Unfortunately, we usually don't get treated for it because we're not supposed to have it.
:hug:

[redtail]

I have just recently been back to my gp, because the pain was getting bad, and he informed me that the pain was due to lack of excercise, the muscles contracting and pulling on the joints!!(he did give me a prescription for pain killers, Im surprised he didn't send me off to see the psycologist as well, you know, its all in your head dear!!!!)he didn't even ask me if I excersised or how bad the pain was??, So has sent me off to the physio, whom I see tomorrow, shes a loverly lady, and Im sure will help me, and will tell me if she thinks its not what the doctor thinks it is. Sorry for venting

[rumpled]

I was doing physical therapy for my frozen shoulder and not able to to really make any "progress". I was using 3lb weights (pathetic!) and when I tried after a few months to move up to heavier weights, I was not able. Now my other shoulder is in bad shape and I am still using the 3lb weight. No one has been able to tell me how much exercise to do but I try to do some... but my lack of progress is what kinda gave the doctors a clue that something else was wrong.
How much exercise are MG'ers supposed to do?

[loisba]

That is a very good question about the exercise. I suppose the best answer would be that we do what we can, without over doing it, since doing too much can lead to a couple of very bad days. Try spacing your exercise out. Do a little, then rest until the muscles have recovered, then do some more. Spread your exercise out through a whole day, little at a time. That might keep muscle tone up, but hopefully won't fatigue the muscles or bring on a worsening of MG symptoms.
Anybody else got a better idea? I'm open to suggestions.
:hug:

[redtail]

Yep Im open to suggestions to, I went to the physio, and it went well, she said to start of on 10 minute walks(I love walking thru the bush) but no more than 10 minutes, so I went for my 10 minute walk, but think I will have to cut it down to 5, ahh well, little steps, one day I may be able to go bush walking again.

[bluestone]

Hi
I think the amount of exercise is very individual for MG. I'm trying to walk, but when I'm going to worse, I walk just 1 or 2 minutes and my strenght is gone. I didn't find yet how to balance the fatigue x exercise. I used to swimm, but now it's not possible.
I read one article about myasthenia and exercises:
http://www.mgfa-mgnet.org/html/exercise.htm (http://http://www.mgfa-mgnet.org/html/exercise.htm)
and, although it's not recent, it has things to think...
Hope everybody is well.
Bluestone

[Maxwell'sMom]

I haven't been diagnosed with Fibromyalgia, but my Cardio said he wondered if I didn't have it. He said that it was an inflamation of the fibers of the muscles. Since I have Raynauds, he seemed to think that they sometimes go hand in hand. He seemed to take fibro very seriously. I also have nerve damage-bi-lateral, so I'm not sure what is causing what sometimes.
Oh, and I do know several mg'ers who have fibromyalgia as well. It seems to stand to reason the way we have to work tired muscles.

Have you ever check out Stan Way's site about his personal excercise program. One has to be very careful. I was told walking was the best for us, and has to be done under a care of a doctor.

[Joanmarie63]

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: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?!?!?!?

:grouphug: I too have MG, since 1991, I have been in remission since 1992. In 2008 I was sprayed by a fire extinguisher and my MG is now out of remission, and I also suffered lung damage, I saw my neuro yesterday and he said I also have Fibromyalgia. I can't take any medications for any of my illnesses due to the fact that I am hyper sensitive to medications. I also am Alpha-1 deficient. I have gone from riding my bike 22 miles and bowling and working to sitting around praying that the pain that has subsided 10 min ago doesn't come back. But I still smile because I know I am alive and have a wonderful family to support me. :grouphug:

[erinhermes]

Spoke with my internist the other day and he HIGHLY recommended excercises - daily excercises for MG.....my neuro on the other hand had told me time and again to only do 80% of what I am capable of........my hema told me to excercise as well -, due to the roids and the havos they wreak on the body.......so I am totally confused:confused:

As for the fibromyalgia - what are the symptoms? How do you know if you have it? These stupid autoimmune diseases are just crazy! I am so frustrated, b/c I know I am in pain and yet no one listens....just tells me that pain isn't usuallu associated with MG - tell that to my back! LOL

How are you? Are you OK?

Big, big hugs!
Erin:DI was doing physical therapy for my frozen shoulder and not able to to really make any "progress". I was using 3lb weights (pathetic!) and when I tried after a few months to move up to heavier weights, I was not able. Now my other shoulder is in bad shape and I am still using the 3lb weight. No one has been able to tell me how much exercise to do but I try to do some... but my lack of progress is what kinda gave the doctors a clue that something else was wrong.
How much exercise are MG'ers supposed to do?

[ras1256]

Hey Kate,

I'm sorry these docs are piling more frustration on you!

My old neuro, whom I felt was generally pretty good on MG and such, kind of jumped to the fibromyalgia dx on me about my pain. I knew some people with fibro, though, and disagreed so off to the rheumie I went.

Fibromyalgia is actually one of their diseases, and it took her all of 5 minutes to say NO - not fibro. The next possible explain for my pain and other additional problems was leftover problems from a cord compression.

This new neuro, however, believes I have one of the polyneuropathies - and some of them are seen also with MG and are autoimmune conditions as well. There are so many different ones caused from all kinds of different things - some B12, Vit E and or Copper deficiences that are reasonably easy to treat.

The one we're looking at on me, however, is a chronic, progressive form that could have been possibly halted had it been caught early. Since I've had it for at least 14 YEARS! now though, it looks like I have some permanent damage to nerves and muscle wasting.

Please ask to see a rheumatologist to either rule out or confirm the fibro, and if it's ruled out, don't let them just throw you into some classification.
It could be something that with early identification you could halt it!

Take care, keep us updated.


I have just recently been back to my gp, because the pain was getting bad, and he informed me that the pain was due to lack of excercise, the muscles contracting and pulling on the joints!!(he did give me a prescription for pain killers, Im surprised he didn't send me off to see the psycologist as well, you know, its all in your head dear!!!!)he didn't even ask me if I excersised or how bad the pain was??, So has sent me off to the physio, whom I see tomorrow, shes a loverly lady, and Im sure will help me, and will tell me if she thinks its not what the doctor thinks it is. Sorry for venting

[redtail]

Hi Becky,

I have just learnt to live with the pain, as I'm sick of doctors telling me to basically "get over it" Its something that isn't too bad, but frustrating as I'd like to know what it is.
thanks for your response

[ras1256]

Hi Becky,

I have just learnt to live with the pain, as I'm sick of doctors telling me to basically "get over it" Its something that isn't too bad, but frustrating as I'd like to know what it is.
thanks for your response
Personal experience - don't let them put you in the position of "just living" with something you know isn't right!

If my new neuro is right and they had dx'd this second condition on me years ago, I wouldn't be "wasting" as I am now. There comes a point with this that they can't do anything to stop it, but can only slow the progression.

I am loosing muscle mass in several places at a rather rapid rate, and loosing feeling in hands and feet. In the beginning 14 years ago it was just a nuisance, but now it's become the number one threat to my future.

I tell you this not to scare you or give you more stress, but just so you and others understand how vital it is to your health that your docs take ALL your symptoms as seriously as they did when they got your dx of MG. Autoimmune's rarely come alone, per my doc and lots of information on the web.

LOL, and DON'T overdo! Exercise is always important, but I was given a distance of 200 ft total walking distance for when I'm doing fairly well - not when I'm having problems. Go for maybe 25 ft out (50 ft round trip), then wait a day and see how that worked out. As you tolerate the very baby steps, increase until you find your new limit which you will have to test from time to time, as it will get to be further as you go along.

You'll get back to your bush walking as long as you approach it slowly!

[erinhermes]

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!

:hug:Erin:hug:Personal experience - don't let them put you in the position of "just living" with something you know isn't right!

If my new neuro is right and they had dx'd this second condition on me years ago, I wouldn't be "wasting" as I am now. There comes a point with this that they can't do anything to stop it, but can only slow the progression.

I am loosing muscle mass in several places at a rather rapid rate, and loosing feeling in hands and feet. In the beginning 14 years ago it was just a nuisance, but now it's become the number one threat to my future.

I tell you this not to scare you or give you more stress, but just so you and others understand how vital it is to your health that your docs take ALL your symptoms as seriously as they did when they got your dx of MG. Autoimmune's rarely come alone, per my doc and lots of information on the web.

LOL, and DON'T overdo! Exercise is always important, but I was given a distance of 200 ft total walking distance for when I'm doing fairly well - not when I'm having problems. Go for maybe 25 ft out (50 ft round trip), then wait a day and see how that worked out. As you tolerate the very baby steps, increase until you find your new limit which you will have to test from time to time, as it will get to be further as you go along.

You'll get back to your bush walking as long as you approach it slowly!

[ras1256]

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! :eek: 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.

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!

:hug:Erin:hug:

[wonder]

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.

[AnnieB3]

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/fibromyalgia/DS00079/DSECTION=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/PageServer?pagename=fibromyalgia
http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_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