burning pain
 

Hi Everyone
I was wondering if anyone out there could help me with some comments.

Although taking mestinon, deflazacort and imuran, I'm still having MG symptoms that are worsening every crisis. I'm handling the side effects of the drugs, like tremors, twitching, light head, stomach aches, and the "side effects" of MG, like muscle pain and depression, but now there is something new, making me crazy. I'm having strong pains on my legs, arms, spine, back, these pains are a burning feeling moving from one place to another, but mainly on ankles, wrists and many points on spine. I have an appointment with my neuro next days and I hope he can help me on this too.

I'm very grateful to those who have responded to me every time I posted and would like to say that your advice helps me very much. I would like to be more helpful to you and I admire those who have the strength to be there for the others although their pains.
Anyway, any comments would help…
I hope you all are well and wish you the best.
Hugs
Bluestone

Sorry you feel so badly. :( The pain you describe is not MG, in my opinion. Sounds like you are having something else. I can't really hazard a guess without more info such as whether this is "bone" pain or "muscle" pain, evidence of swelling, etc. I hope you can find some answers with your neuro.

Missy

I just went to a specialist for my evaluation to see if I have MG... he happened to say that MG does not cause intense pain (I am squealing in pain). He said that if it turns out that I have MG, it would have to be in conjunction with fibromyalgia. Perhaps you should see a rheumatologist?

Hiya Blueston, so sorry to hear you are struggling.
I wish I had an answer for you, but can only say Im thinking of you at this time, it must be something in the air as my MG is playing up as well.
I went to the Dr for my muscle pain, and was informed it was due to lack of excercise, I dont think he even asked what excercise I did!!
I hope you find some answers, I know it is sometimes hard, but know you are in my thoughts
take care

Hi Missy
This pain comes and goes, my feeling is that it's in my nerves, not in the bones or muscles. I have some muscle pain after the days when MG is worst and some of them are like I have done an extenuos exercise. This burning pain is different. I don't have any kind of swelling or hot joints, and the pains are not in the joints. Anyway, thank you. I will see what the neuro will say.
Bluestone

Hi Rumpled
You are right! All books and medical literature are very emphatic on this: MG doesn't cause any pain. In my oppinion, they should be revised: pain is something important in pacients with MG even if it's secondary. Muscle pain is always present when the person has weakness affecting limbs, arms, neck, axial muscles. To stay in a correct position preserving bones, spine, joints is a major challenge for me: when I sit for lunch, when I sit in front a computer, when I try to see TV, when I lift something. I have muscle contractures all the time and massages combined with some kind of anesthesic gel is the way I'm dealing daily with this.
I have fibromyalgia too and I'm used to it. But now, I don't know if the burning pains that I'm having are fibro or something new.
You know what I'm saying: having pain all the days, besides weakness and fatigue is something that makes me want to cry...

Hi Redtail, it's good to hear from you!
About exercises: I'm trying the not repetitive ones, like hydrotherapy and stretching. They help but don't take you out these pains... Sometimes it's hard to say if the exercises will help or will worse MG, and I feel I'm making attempts all the time, not sure if I'm doing the things correctly. One thing I'm sure: the massages help me a lot. (I'm doing another exercise: I can't afford azathioprine and wellbutrin and deflazacort and omeprazol and mestinon and massages and hydrotherapy. I'm on license from my work completing one year now and I'm receiving just the money from social security, that is not too much...)
Thank you for your words. It's so good to know that someone in Australia is thinking on me, here in Brazil, two sides of the globe so distant one from the other... You are in my thoughts too!
Bluestone

Hi Bluestone.
Im seeing a physiotherapist who is helping me out with the right sort of excercises. She wants me to walk, just 5/10 minutes a day, she is so nice and caring, and stresses that I need to exercise, but not to overdo it!!
I really feel for you that you cant afford all your medications, here in Australia, as Im on a social security payment not very much either, and I cant afford massages but I get all my medications cheaply, and am just about to go into hospital for a IVIG infusion. I feel so blessed to live in a country where medication and hospital care is so accessible.
You take care
Redtail.