[KellyAnn]

I know that people with MG suffer muscle weakness but until you were diagnosed and treated did any of you suffer from overall body pain, my doctor said that there is usually no pain with this disease.

Thanks in Advance

[Anacrusis]

Originally Posted by KellyAnn

I know that people with MG suffer muscle weakness but until you were diagnosed and treated did any of you suffer from overall body pain, my doctor said that there is usually no pain with this disease.

Thanks in Advance

Hello

If you have something else as well as MG it is possible.
I know of someone with MG & fibromyalgia who endures a lot of pain on a regular basis.
If some of your muscles are doing jobs they shouldn´t be doing to compensate for others - they can get painful.

I have to admit I had pain with chronic fatigue over two years - it even hurt to wear clothes for a while.
But then - two years of myasthenic weakness followed that were´painless´......

Everything is still pain free unless I have overused certain muscles like swallowing muscles, without realizing it.
(that means only using them like normal people do) Those can feel like a battleground especially during a flare up.

It will be interesting to read your answers.

Anacrusis

[Juanitad]

It is true that the disease itself does not come with pain. However, if I try to use my muscles longer than I should, then I have pain which I liken to overusing them. As an example, my legs are really starting to become weak and last week, I walked around WalMart (I usually use the carts). The next day, my legs felt like I had climbed a mountain. All the muscles were sore like they had been overstretched. Hope this helps.

[Stellatum]

I don't have pain, but from what I've read here, I have the impression that I'm one of the minority. It may also be that I don't overuse my muscles because my situation is such that I'm able to rest when I need to.

Abby

[BackwardPawn]

There are other autoimmune diseases that can cause pain and its possible your doctor is missing something. Autoimmune diseases often go together. You might want to see if there are any other diseases that fit your symptoms.

[SoftTalker]

Hi, KellyAnn - I am a new poster - but not new to MG.

Well, speaking from experience - one of my first symptoms - along with leg weakness, and upper torso muscle weakness (weak proximal muscles) (resulting in poor lower back support) = was severe (at times) lower back muscle pain !

I found it perplexing that when I stood for sometimes a short time, sometimes a long time - that I suffered from such severe lower muscular back pain. I would sit or lay down, relax my muscles, and eventually, the pain would subside. I remember thinking that I was glad I had a job that I could "sit down" at !

After the MG was diagnosed, I discusse this with my neuro - and he agreed that this made sense!

My neuro says he has seen the same pain (syndrome) from MG that I have - with a couple of other patients that he has.

Often now, my neck muscles become so weak that it causes strain and eventual pain in my neck muscles. Hence, I have "adapted" and started to use a chair at work and at home that has neck support.

I even have occasional stomach "spasms" - feels like a charlie horse in my mid abdomen - that my nuero and internal med doctors (after ruling out other issues) have attributed to weak abdominal muscles (which are again, proximal muscles.

I think I am very lucky that my neuro did not made the "black and white statement" that MG does not cause pain. I have read this before. It does - or can - (at least in my experience).

[denik258]

Originally Posted by KellyAnn

I know that people with MG suffer muscle weakness but until you were diagnosed and treated did any of you suffer from overall body pain, my doctor said that there is usually no pain with this disease.

Thanks in Advance

I do. Jaw and neck pain as well as leg and foot cramps. Before I was diagnosed they thought I had TMJ. I think I read on these boards someone else had the same experience. I do not see why this is a mystery to MDs that treat MG. Docs tell you all the time backaches are caused by weak abdominal s so why wouldn't other muscles aches and cramping be caused by a set of weak muscles and another overcompensating for them. Makes sense to me.

[AnnieB3]

KellyAnn, Do you have muscular pain? Have you spoken to your primary doctor about it?

I have a chronically low to lower Vitamin D. I supplement D3 three times a day due to that. That's one cause of muscle pain. There are many others, including a steroid myopathy for those who've taken steroids a long time.

So it's always good to figure out WHY you have pain first because the treatments vary.

Pain is not a primary symptom of MG but it is a vicious secondary symptom! Think about it. What happens when athletes push muscles too far? They twitch, cramp and spasm. For MGers, that just happens more quickly. Like right now, my right arm is pretty weak and there is pain in my bicep. You might start to see a pattern of pain depending upon which muscles you use more often.

The back is one of the worst places to get weak. When the chest wall muscles get weak, besides making it harder to breathe, they throw off the spine. Then muscles can get so weak that you get tight spots in the muscle tissue. Massaging out those spots can really help make things better. A good physical therapist can show you how to nip that stuff in the bud so that it doesn't progress to the point where you can't even stand. I've been there and it's not fun!

Pain can also be from a lack of calcium or other electrolytes (or too much of them). Or a buildup of lactate.

Maybe when a doctor tells you that MG doesn't cause pain, you can very gently explain why it in fact does. Our entire skeleton needs strong muscles to work well. Otherwise we'd fall over like a rag doll. Oh, yeah, we do that too sometimes!

Annie