Can we talk about pain?
 

I know all the reference information symptoms lists do not list pain for MG'ers but I have a lot of pain. Not severe pain but constant aching, stiffness almost to the point of cramping in my large muscle (hip flexor, thigh, deltoids, pectorals and lats). ANd most of my weakness and discomfort is on the right side - the same side as the eye droop. My left side experience the same symptoms too, but much more mild.

So here are my questions: Is anyone else experiencing this type of pain and what are you doing for it? Does anyone else have symptoms much more severe on one side of their body than the other?

Sero-negative and still waiting for mestinon,
kathie

I am seronegative. Mestinon does help me a lot.

I am also in pain most of the time. My right side symptoms are much worse than my left side symptoms (weakness, vision, ptosis). My worse pain seems to be around joints and tendons but I also have muscle pain. I have been to a rheumatologist and she found nothing wrong.

What do I do for it? That is a good question. I take ibuprofen. I have been told by several doctors that chronic use of ibuprofen will destroy my kidneys. Sometimes I just suffer. When it gets too bad, I take 400 mg of ibuprofen. I am very tired of pain.

I also experience a considerable amount of pain and stiffness, most noticeably after recently discontinuing the prednisone (under my neurologist's supervision). When I was on prednisone I had few episodes of weakness and no stiffness/aching. Now it's constant. I don't notice the symptoms to be more prominent on one side of my body, though I have noticed in the past that it affected my right side more.

I have increased the frequency that I take Mestinon and this has helped with the weakness. I just take Tylenol for the stiffness/achiness and that helps to relieve it a bit. I'm not able to take ibuprofen due to other medication that I'm taking.

I know that my neurologist will want me to start back on prednisone, though I hesitate to do that b/c of side effects I've experienced being on the pred before.

It's a difficult balance. I am now more aware of my triggers and work to manage all of that. Lack of sleep is one of my biggest triggers.

I am seronegative, tensilon positive.
Cate

Thanks Cate and Celeste, It is nice to know I am not the only one. The warmer weather this weak has made my symptoms worse. I am not looking forward to the Spring. I am on the waiting list for the SFEMG, scheduled for the first opening in June. The unseasonally warm weather is a reminder that thing are going to get much worse before I get some relief.

thanks
Kathie

Kathie, Have you ever seen a rheumatologist? With the wheezing, coughing and pain, I really wonder if you have some kind of inflammatory condition. You could have MG too. I just wouldn't want you missing anything.

Muscles do become painful if they get too weak. They can also get painful from a Vitamin D deficiency, electrolyte imbalance and other causes too.

If you poke at your muscles, are they generally painful or can you find a "trigger point" that is really painful? If you are generally painful, you probably need a rheumatologist to evaluate you. If it's more targeted pain, it could be from weak muscles, tense muscles or nerve issues. That is something a neurologist should evaluate.

What I do for my pain is get enough sleep, like Cate, take acetaminophen, use massage, get enough Vitamin D3 daily (I was tested and was deficient and continue to run low), use the best posture I can while doing anything and stay well hydrated. The thing with pain is that it is best to nip it in the bud as soon as possible or you can get into "cyclic pain." Physical therapy works wonders! My B12 deficiency caused such horrific nerve pain.

What is funny is that I was just watching Dr. Oz and he was talking about natural ways to combat pain! Cherries, for example. See his site from today for any info.

Pain should always be evaluated because there are so many potential causes of it. It's a very hard thing to live with.

Annie

Thanks again Annie, I have been to a rheumatolist, he thought it was MG. I first went to an allergist/pulmonary doctor who said she though all my symptoms were multiple auto-immune issues. She sent me to a dermatologist and the rheumotologist, Rheumtologist thought it was MG and sent me to the neurologist. Neurologist thought it was MS, MRI and all antibodies came back negative, so he said it was not MS or MG. Diagnosed optic neuritis and put me on anti-inflamatories and suggested it may be another auto-immune disease and suggested I go back to the GI and rheumatologist. I was still experiencing the eye issues and several member here suggested I see a neuro-optomologist. So I went to Wills Eye hospital in Philly. Neuro optomologist said he thought it was MG. I could not hold an upward gaze and my right eye went its own way during the exam and my speech went slurry. He orderred more antibody test and the sfemg. Antibodies are still negative and still waiting (6 months) on the sfemg.

I have had asthma all my life. I also have eczema. The gastro problems I have had since I was 5 and I think it may be Chrons. It is the chronic fatigue and muscle weakness which most affects my quality of life at the moment.

My vitamin D level is good. The pain is not a specific spot. It is generalized achiness is which ever muscle are weakest that day. Usually always the right hips and thigh, sometimes the pectorals, deltoid, latts. It is a really bad day when it goes to the calf and lower arms.

I think it is more then 1 auto-immune, but it is the MG-like symptoms I need to get under control. I think my muscles are overworked everyday. I am still working full time, and doing all my regular chores. Without a definite diagnosis, I feel foolish in making major changes in my life such as cutting down my work week or selling my 2 story home, etc..

thanks
kathie

Kathie, Duh, I forgot how much doctoring you've already done.

Here, this is from my book for you. We really need centers where undiagnosed patients can go. I've been batted back and forth a lot too. It's enough to make you want to quit doctoring.

"Sending undiagnosed patients all over town, from specialist to specialist, as if we’re on a health care scavenger hunt, is a ridiculous way to conduct good health care. It doesn’t make good business sense either. I’m willing to bet that, for most of you doctors, playing Ping-Pong™ with a patient’s care is definitely not as much fun as playing for a doctoring team would be."

Hang in there.

Annie

Thanks Annie, If it wasn't for a very caring GP and the support of this forum, I think I might have given up by now. But I am stubborn Irish trid is trid (through and through) as my mother would have said and I will persevere.
With the warmer weather, I am just having a bad week. If my symptoms worsen before the SFemg in June, I am planning to go down to John Hopkins. It is the not knowing and not being able to make a workable life plan ( reduce work hours, more accommodating housing, etc) as well as no medication to help, that make the day to day reality worse. And I guess my fall a couple of weeks ago gave me a realty wake-up call.

thanks,
kathie

kathie

The whole swapping around from doctor to doctor thing is crazy. I have been done the same way.

If you stumped your right big toe, you would have to go to a right big toe specialist. A left big toe specialist couldn't understand what was wrong for sure.

All they do is pass me around like they do you. The neurologist seems to feel that I have MG. He has no suggestion about the pain. He just warned me that taking too much ibuprofen will kill me. He had no suggestion as to other options.

Hi!
I too suffer from almost constant pain. Mine is pretty even throughout my large muscles. To me it feels like poison in my muscles. I've been checked for Fybro had my protein levels checked, all my vitamin levels checked and a few other things I can't recall . I am taking vicoden, ibuprofen and wear a low dose fentenyl patch. All of these control my pain pretty well when I remember to use them in a timely manner. Most of my nueros deny the connection of pain and mg except as a possible side effect of overuse of non weak muscles. I however believe there to be a direct connection although I have no proof other than how y body feels. All of my doctors have agreed that finding a "cause" of the pain is less important than treating it. I kind of agree because whether we know the reason doesn't mean there is a cure, and I'd rather not suffer constantly. Someday maybe there will be better answers and treatments to our hell.
Wishing this to find you strong and healthy
Jess