[AnnieB3]

Pain is a complicated issue and there are MANY causes for it, including the obvious ones of Vitamin D and B12 deficiencies. That is why a differential diagnosis is so important before a doctor throws a drug or two at you.

If a doctor had given me Neurontin for pain (which is relatively contraindicated in MG) and Provigil for fatigue during my B12 deficiency, I would be fairly pain-free and more awake but would have eventually died of that B12 def. because you can't live without it.

Some causes of peripheral neuropathies:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

The biggest problem with figuring out what is causing the pain is that it isn't "easy." It may involve many doctors and tests. Or involve a doctor having to think. If you have a good internist, they may be smart enough to run a bunch of tests and think about what could be going on. A neurologist can also assess pain syndromes. Fibromyalgia can be assessed by a rheumatologist too, who can exclude inflammatory diseases as the cause.

You can find yourself running all over town for help. However, it is worthwhile to do that if you are in extreme pain because knowing the cause of what is going on is the BEST way to alleviate the symptoms.

I'm sorry that Erin had to go half way across the country to get answers about her pain but if she finds an answer, then it's worth it for her. But it can be expensive and exhausting. I hope you do find answers Erin!

If you have a good doctor or two, who are smart and nice, then you have a good chance of figuring out what is going on. You may need to make more than one appointment to figure it out. Some medical problems can't be figured out by one appointment or a few tests.

I don't have the energy right now to put up a bunch of sites but I'll bet some of you guys do! The sooner you deal with and get rid of pain, the better off you are, especially women who often have pain that even befuddles researchers.

My opinion is that HOW you think about doctoring and medical issues is the most important factor in figuring out what is going on. Doctors don't often have the time to do that thinking and so you may have to pick up the slack by writing notes, doing research and trying to figure it out (and then going back to your doctors).

It seems that a lot of you have pain issues, so I wanted to at least try to help.

Annie
This is where I wish your pain would go! Far, far away!!!

[alice md]

Annie,

I think that if you are up to it, it is a great idea to write all the possible reasons for pain in MG. going from the more common to the more rare. those that are directly related to MG (over use of weak muscles, loss of support of joints and the skeleton), and those that are not (eg- concomitant thyroid disorders, rheumy such as lupus etc.).

I too have noticed that it is not rare for patients with MG to suffer from various musculoskeletal complications from the illness or the treatment.
eg- verterbral fractures in relatively young people etc. and also quite a few suffer from other autoimmune disorders that lead to joint pain.

I recently started having pain in my wrists (carpal tunnel like), and realized that it is probably due to the fact that I use my arms (which are not that strong),every time I have to get up , or walk, putting a lot of strain on the wrist joint. that, combined with compensating for not being able to talk as much and writing a lot on the computer (even though I do have proper support for my arms, a special mouse and keyboard, but still).

I think that it is not only important to figure the cause and treat the pain, once it has happend. it is not less important to try and prevent it, if possible.

also, it is important that neurologists and patients will know that pain can be a part of MG, and although it is not part of the process of the illness (such as would be in inflamatory myopathies which are usually accompnied by muscle pain), it is part of the illness in many patients.

I think that just like respiratory problems that are many times missdiagnosed or overlooked, the same happens with pain. both are somewhat ill-defined subjective complaints, that require patience and efforts from the physician and the patient alike, and helping patients (and hopefully also physicians) be more aware of it, and giving them better tools to understand it at least to some extent, is I think very important.

alice

[trobentica]

greetings!

i was wondering; has anyone found some pubmed (or similar) studies, articles on MG and pain relation?

I frequently experience eyestrain; the overuse/compensate hypothesis seems plausible to me; but I haven't found any articles that actually dwells upon this issue...

best regards.

[AnnieB3]

Hi, Trobentica. Welcome. I would love to know how you came up with that name, it's very unusual!

I have looked and looked and the only studies I have found are in relation to what a lack of acetylcholine does to the muscles and what overuse in "normal" people does to the muscles. There are no specific MG studies that I have found, which doesn't really surprise me. Maybe there are some but I cannot find any no matter how I search. Doctors have not seemingly been concerned - or apparently interested - at all in the secondary effects of pain in MG but only in the primary weakness.

It is a pretty basic physiology situation though. When muscles get worn out and weak, they can cramp or spasm. Like marathon runners or long-distance bikers or any other athlete who does something for a long or sustained time. It just takes a far shorter time to happen to the muscles of someone with MG.

I'm sorry I can't help. Have you had MG long? Are you doing okay?

Annie

[AnnieB3]

Alice, Thanks for you reply. I really don't have time or energy right now to do more research on this or to put up what sites I do have. I really wanted to emphasize that there are so many possible causes - besides MG - for pain and that a differential diagnosis is essential when that happens.

Annie

[Alan53]

hi annie
my neuro said that their is no pain with MG then when i said i had severe pain in my knees he then said its prob due to weakness in the muscles near the knee and preds would solve that it did but i'm now off the preds and back is the knee pain i supose MG must effect people in so many ways as the side effects of the drugs
alan

[AnnieB3]

Alan, I love when people who don't have a disease can 100% say what it's like to have a disease!

I am wondering about the knee pain. Have you ever had your knees x-rayed? Could it be arthritis? Arthritis gets better on Pred too!

Annie

[PMCPMC]

Originally Posted by AnnieB3

Pain is a complicated issue and there are MANY causes for it, including the obvious ones of Vitamin D and B12 deficiencies. That is why a differential diagnosis is so important before a doctor throws a drug or two at you.

If a doctor had given me Neurontin for pain (which is relatively contraindicated in MG) and Provigil for fatigue during my B12 deficiency, I would be fairly pain-free and more awake but would have eventually died of that B12 def. because you can't live without it.

Some causes of peripheral neuropathies:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

The biggest problem with figuring out what is causing the pain is that it isn't "easy." It may involve many doctors and tests. Or involve a doctor having to think. If you have a good internist, they may be smart enough to run a bunch of tests and think about what could be going on. A neurologist can also assess pain syndromes. Fibromyalgia can be assessed by a rheumatologist too, who can exclude inflammatory diseases as the cause.

You can find yourself running all over town for help. However, it is worthwhile to do that if you are in extreme pain because knowing the cause of what is going on is the BEST way to alleviate the symptoms.

I'm sorry that Erin had to go half way across the country to get answers about her pain but if she finds an answer, then it's worth it for her. But it can be expensive and exhausting. I hope you do find answers Erin!

If you have a good doctor or two, who are smart and nice, then you have a good chance of figuring out what is going on. You may need to make more than one appointment to figure it out. Some medical problems can't be figured out by one appointment or a few tests.

I don't have the energy right now to put up a bunch of sites but I'll bet some of you guys do! The sooner you deal with and get rid of pain, the better off you are, especially women who often have pain that even befuddles researchers.

My opinion is that HOW you think about doctoring and medical issues is the most important factor in figuring out what is going on. Doctors don't often have the time to do that thinking and so you may have to pick up the slack by writing notes, doing research and trying to figure it out (and then going back to your doctors).

It seems that a lot of you have pain issues, so I wanted to at least try to help.

Annie
This is where I wish your pain would go! Far, far away!!!

when mine was higher than 145/80 i had pains that i could track with a hand held masager to the tracks of my veins from the head,down my neck,across the shoulder bone ,down my upper arm ,across my forearm and into my fingers.
a similar pattern occured in my legs from hip to knee through calf to foot.
in my case it was worse on the left side.
reduced my blood pressure and the pain was gone .
increased blood pressure and pain returned.
did this over a period of two weeks.
blood presure down now pain not there.

[jana]

Originally Posted by PMCPMC

when mine was higher than 145/80 i had pains that i could track with a hand held masager to the tracks of my veins from the head,down my neck,across the shoulder bone ,down my upper arm ,across my forearm and into my fingers.
a similar pattern occured in my legs from hip to knee through calf to foot.
in my case it was worse on the left side.
reduced my blood pressure and the pain was gone .
increased blood pressure and pain returned.
did this over a period of two weeks.
blood presure down now pain not there.

Patrick, I like reading medical books, websites, magazines, etc. -- yeah, weird, I know -- anyway, your symptoms (pain around veins/arteries) reminded me of something I had read -- vasculitis. Of course, reading and applying are two TOTALLY different things and a I am NOT a doc or even IN medicine, but...........vasculitis could mean that you have something ELSE going on like RA or Lupus. That might explain some of your other symptoms. Autoimmunes tend to run "in packs". Few of us have only ONE.

[AnnieB3]

Thanks, Jana. What I was thinking about was a hidden occlusion of an artery somewhere. It would become more evident with higher blood pressure.

Patrick, A heart can be fine but if doctors don't check out limbs too, like with an ankle-brachial index test (blood pressure taken on legs and arms on both sides), then they may miss something. I'm sorry your medical system over there is not as good as it could be.

Annie