Myasthenia gravis and pain?
 

I have a question regarding MG and pain. I have gone through more testing, and once again, the tests have turned out normal. But I have all of the symptoms, and I think possibly my doctors are going to start treating me as though I have myasthenia gravis even though the tests are negative.

I have a question. For those of you who have MG, do you have pain with it? I didn't have pain initially, but I am having pain now. If you have pain, how do you deal with it? I can't take pain medications due to other health problems. I've been trying to keep stretching, and I rub the sore muscles, but it's not really working that well. Thanks for any ideas that others can share.

Take care,
Erin

YES, I have pain with the MG. Sometimes I just grin and bear it and sometimes take some Advil to ease it a bit. I take Pyridostigmine 60mg x 3 and it helps but not all the time. My EMG/NCS also was normal- the MD who did it though, kept jamming the needle in me because he did not see the response he wanted! I have a severely high creatinine kinase level and a high Myelin level, these sometimes come back in the normal range also. Saw a specialist and she knew by my exam and symptoms what I had!

Dear dhanes,

Thank you so much for your response. I am so sorry that you have pain also. I'm glad you can take Advil sometimes, and it is helpful, along with the mestinon. It's really good that you have a doctor who is in your corner! It's hard when the test results are negative. Please take good care of yourself.

Sending best wishes your way,
Erin

I have a great deal of pain since contracting MG. Most of the time it comes in the form of muscle cramps and spasms. Often, one spasm will set off another in another part of my body and I get a cascading effect. Because the majority of the literature doesn't speak of pain associated with MG, my doctor refused to give me anything that worked. We did try various nsaids with no results. It affected my ability to sleep and my primary ordered a sleep study which showed that I was getting zero percent stage three and REM sleep. He then prescribed narcotics for pain, ordered another sleep study which showed marked improvement in all stages.

One strange effect that I'm having with the pain meds though, and while I don't want to hijack you thread, I would be grateful if anyone would weigh in on this if they've had similar experiences - is this: I am taking hydrocodone 10/325mg. I have had this medication prescribed to me a few times over my lifetime and the result was always the same - drowsiness along with the pain relief. However, taking it now, has almost exactly opposite results. I take a pain pill and within thirty minutes, I feel almost normal. My strength returns almost completely for three to four hours, I don't need my cane...I feel pre-MG normal.

I can't imagine a reason for this side effect, but I am certainly not complaining. The only drawback is that I am poignantly aware of the addictive qualities of opiates, and so I limit myself to significantly less than what is prescribed. I am prescribed 20 mg a day (600mg/month) - and I have been restricting myself to about 200mg/month. This means I am often going a couple of days without - in between taking it. Today, I was having a very bad day and I allowed myself my maximum dosage, which I set at three pills throughout the day - but I have not had any for two days and I will refrain tomorrow. But it's curious.

Erin,

The logic of the Neurologists is that MG affects the Neuromuscular junction, and therefore cannot cause pain! However they conveniently overlook the result that comes when some muscle fibers are not activated. Those that are still responding are overworked in an effort to compensate. Overworked muscles will create muscle ache which is a form of pain.

I will sometimes take Advil, for the pain, but I would rather take extra Mestinon (not always a good idea) or simply rest. The best cure for overworked muscles being simple rest.

However that does mean that on a bad day I can spend most of the day resting, trying to recover from a short, slow walk to the shops.

Angell,

If the pain is sufficient that you require Hydrocodone, then it seems possible that there is something else apart from or alongside the MG going wrong.

Also if Hydrocodone is "fixing" all the problems, even, temporarily, that does not sound like MG. It is not uncommon for people with one autoimmune disease to acquire a 2nd one, after all the problem is the autoimmune system, MG or Lupus or whatever is simply the manner in which your autoimmune system has decided to malfunction.

Dear JulieJayne,

Thanks for the reply. Yes, that was what I thought, that the understanding was that MG didn't cause pain, but yes, it seems logical to me that the overworked muscles would get sore. This seems to be the sort of thing I am experiencing. I have wished I could take Aleve, because I think it would help. Due to other health issues, I can't take aspirin, Motrin, Tylenol, Aleve, or any sort of pain medication. I'm trying to figure out what else to do. I think heat might feel good, but would make the muscles weaker and harder to use. I've been doing some stretching, and I've massaged some of the muscles myself, but I'm not sure how much that is helping. I keep trying, though.

I don't think I'd take the chance of changing the Mestinon dose, tempting as that is sometimes! But I have sometimes wondered if that would help. I'd also run out of the prescription prematurely.

Best wishes to you, and thank again for your reply.

Take care,
Erin

Dear Angell,

I don't know any information on the use of opioids for pain related to MG. However, in the past, I did take pain medication for other reasons. It was very helpful for me. I went to a well-recognized pain management clinic at a teaching hospital here. I had the same reaction you did. Rather than getting sleepy due to the pain medication, as I had in the past, I did much better with it. I had more energy, and I could concentrate better, that sort of thing. The doctors at the clinic told me that this can happen sometimes when people have had a lot of pain, and the pain is finally treated appropriately. Sometimes patients function much better on pain medication than they do off it, when they finally get some relief from their pain. Maybe it is your MG pain, and perhaps as JulieJayne said, you might have another issue as well. At any rate, it sounds like the pain medication has really been a useful part of your treatment.

I hope you'll talk with your doctor about the use of your medication. Most people can use pain medication safely, and will not become addicted. It is a shame for you to miss out on using it regularly if it is helping you move more easily and also get better sleep.

Take care,
Erin

I've been tested for a number of other autoimmune disorders, but no hits yet. I do believe it is related to the MG however. I also realize that I could be wrong. But here's the situation:

My doctor tells me that I can't work. So I've applied for disability. If one works while they are awaiting disability, then that is considered proof that one can work and therefore disability is denied. Unfortunately, no one seems to have any answer about how I'm suppose to keep a roof over my head, food in my stomach, and put gas into the car so that I can get to an average of 3.89 doctor appointments a week. So I work under the table.

I wake at 4am every day so that the pain and stiffness is sufficiently under control that I can move by 6:30am when I start working. I feed sixty-five horses every morning, followed by mucking (cleaning) twenty-four stalls. When my legs give out and I fall, I get back up again and continue because there is no other choice. In December I had shoulder surgery to repair a complete tear of my left rotary cuff and bicep which tore off. An MRI has shown that my right rotary cuff and bicep have also torn, along with both elbows and my right knee. One surgery at a time.

So far this year we've received 56 tonnes of alfalfa and grass to feed the horses. We average a seven tonne delivery every week, though we've received as much as twenty-one tonnes in a single day. I have to unload the hay and stack it. The alfalfa comes in thirty-five kilogram bales, the grass comes in fifty kilogram bales. Thus far this year I have had to unload them and stack them (six high) using one arm because of the surgery.

Fences need repaired daily, usually at least a couple of ninety kilogram railroad ties need to be planted in a meter deep hole every week. It's all done by hand, regardless of whether I'm having a good day with my MG or a bad one. Then, at 4pm, it's time to feed the horses again. It may be that the pain is unrelated to my MG, but this kind of daily activity coupled with the MG pushes my muscles to the breaking point and beyond, as evidenced by the muscle and tendon tears.