Quote:
Originally Posted by 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  . 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