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Medical Forum / Diseases and Disorders / Epilepsy / December 2003Muscle and/or Tendon Pain
For quite some time now I've been experiencing pain in my arms - forearms & upper arms up to the shoulders, but not in the shoulders themselves. This always develops during the night while I'm sleeping with extreme pain although it gets better once I'm up & about and I usually don't notice it then. The sensitivity never goes away however as I guess the damage has been done and I can experience sharp pain if I reach upwards for something at the wrong angle during the day. The pain is not just in my left side which I sleep on, but is equally on my right side which I never sleep on. I suggested to my epileptologist that I might be having seizures affecting the muscles during my sleep that cause this, but he rejected the idea out of hand. I'm been on Neurontin (gabapentin) for 3 years now and on phenobarbital for 1 year. Unfortunately, although I've logged all of my seizures (Simple & Complex) on the calendar, I never logged the muscle pains as I guess my mind was on the seizures. I do know that I didn't have this pain before I started on Neurontin, but don't know if that's when it started or if it was more recently. That all part of the memory problems - CRS! In doing web searches, I find nothing about phenobarbital causing muscle pains, but did find an article suggesting that neurontin could cause these pains. My epileptologist's comment when I showed him the article was "you don't believe everything you see on the Internet?" and then said it was the phenobarbital although he didn't say that when I complained about it on the previous visit. My regular doctor (general practitioner) has no answers as to what the problem might be. It might be worth mentioning that I also get severe cramps in my hands for random periods that come when doing something like holding my toothbrush, for example. Anyone else with this problem? Any ideas? Bob Can you put your arm behind your back, in other words has your range of motion changed? As a woman I noticed a problem when I couldn't unhook my bra from the back and as far as range of motion in the front it hurt to put the dishes in the cupboards. Once I went to reach up and shake someone's hand while I was sitting at my desk and I had a sharp pain shoot up my arm. I was having problems sleeping because I would wake up with sharp pain going up my arm. The doctor finally sent me to an orthopedic doctor. He checked me over and talked to me and we figured out that one of the seizure I had when my hubby was helping me caused the damage. He was holding on to my arm during the seizure and this caused my shoulder to dislocate and relocate. But the damage was done. The doctor sent me to physical therapy and they worked on my shoulder weekly. I did special exercises daily and even got to the point where I was working out in their gym doing weight bearing exercises. Take care, Julie > For quite some time now I've been experiencing pain in my arms - > forearms & upper arms up to the shoulders, but not in the shoulders [quoted text clipped - 33 lines] > > Bob Hi Julie > Can you put your arm behind your back, in other words has your range of > motion changed? No way can I do that. Any attempt to do so causes extreme pain and it's painful to put a shirt or sweater on because of reaching back to put my hands in the sleeves. > As a woman I noticed a problem when I couldn't unhook my > bra from the back and as far as range of motion in the front it hurt to put > the dishes in the cupboards. Once I went to reach up and shake someone's > hand while I was sitting at my desk and I had a sharp pain shoot up my arm. That's similar to my situation. > I was having problems sleeping because I would wake up with sharp pain going > up my arm. My damage always occurs at night and is most painful at night. That's when the damage is being done as far as I can tell. > The doctor finally sent me to an orthopedic doctor. He checked > me over and talked to me and we figured out that one of the seizure I had > when my hubby was helping me caused the damage. He was holding on to my arm > during the seizure and this caused my shoulder to dislocate and relocate. > But the damage was done. Mine couldn't have been caused like that because I've never had a tonic-clonic and the pain is bilateral and in the muscle/tendon, not in the joints. > The doctor sent me to physical therapy and they worked on my shoulder > weekly. I did special exercises daily and even got to the point where I was > working out in their gym doing weight bearing exercises. The damage continues at night and exercise during the day isn't going to help it. It must be more than just a coincidence that it started since the return of my seizures and taking AED's. I've also got a couple of clueless doctors. Thanks for responding! Bob > Take care, > Julie [quoted text clipped - 36 lines] > > > > Bob You might think about checking it out with a doctor who specializes, like an orthopedic doctor. I had a similar problem with my left shoulder several years after the problem with my right shoulder. But this time it didn't have anything to do with my epilepsy. It slowly started to give me pain and I couldn't raise my arm or put it behind my back. Shutting the car door even hurt. So I asked my doctor to send me to the same place that I had gone to before. He wrote out a prescription and sent me to have physical therapy. I went through the same kind of routine, they have special techniques to slowly get your range of motion back. It can be painful to get the therapy but it is worth it because after several months you can finally use your arm again, and the pain at night stopped. They tell you which exercises to do for your particular problem. I even did some exercises in a warm swimming pool. Instead of thinking that your pain may have to do with your epilepsy, go to the doctor and ask to get physical therapy to stop the pain and improve your range of motion. Take care, Julie > Hi Julie > [quoted text clipped - 79 lines] > > > > > > Bob > You might think about checking it out with a doctor who specializes, like an > orthopedic doctor. <snip> > Instead of thinking that your pain may have to do with your epilepsy, go to the > doctor and ask to get physical therapy to stop the pain and improve your range of > motion. But we already know that your pain has a different type of origin than mine (joint damage). Mine is just simply too coincidental to the renewal of seizures & the taking of the various drugs. We all know that the brain is a different type of animal when we are sleeping than when we are awake and the combination of my condition along with the drugs is making something happen. As I said, my doctor had nothing to say when I complained on my previous visit, but on my last visit he said "it's the phenobarbital" and prescribed Primidone (mysoline). What a joke! Mysoline metabolizes into phenobarbital and it made me worse if anything. I've quit and gone back to the old way. But can you imagine? "Here's your new prescription and see me in 3 months"!!! A new drug for me that should be monitored closely at the beginning and he says "see me in 3 months". That's for patients who are stabilized & doing well! Gaaaah! Bob > For quite some time now I've been experiencing pain in my arms - > forearms & upper arms up to the shoulders, but not in the shoulders [quoted text clipped - 31 lines] > > Anyone else with this problem? Any ideas? I do some work for a doctor who treats spine problems, and some of your symptoms sound similar to some of the patients he treats. The spine includes the bony structure (including the joints that attach ribs to spine), the central core, and also the nerves/nerve roots that are in that area. I'm telling ya, there are a lot of potential things that can go wrong with the spine and surrounding area. A doctor of osteopathy (they have a DO after their name instead of an MD) probably can evaluate you. A DO is like a combination of chiropractor with MD training, and DOs can prescribe medications and perform medical procedures because they are an MD as well. Some of the patients had been referred by non MD chiropractors but generally only after prolonged chiropractic treatment didn't work out. Some of these chiropractors are excellent in evaluating the problem and referring to another physician when appropriate. Barb > Bob > > For quite some time now I've been experiencing pain in my arms - > > forearms & upper arms up to the shoulders, but not in the shoulders [quoted text clipped - 45 lines] > chiropractors are excellent in evaluating the problem and referring to > another physician when appropriate. Thanks for the feedback, Barb. I appreciate it. Your tip might possibly explain the muscle cramps in my calf that were waking me up. The calf would cramp up so tightly & painfully that my toe was sticking straight out and I had to get out of bed & put my weight on my toe to pull the cramp out. That all stopped some weeks ago, but many years ago I was diagnosed with a spinal problem in the very low spine around the 4th? or 5th? vertebra. The recommendation was to have the vertebrae fused, but I passed on that operation. The effect of that spinal problem is to put pressure on my spinal cord at that point and my legs will sometimes go numb if I stand for too long or I will walk in a stumbling way. But this current situation is in my arms (&neck) only. If it were in my more upper spinal cord, then I would expect there to also be problems in my rib cage, chest muscles, & back muscles. That isn't the case, so I very much doubt a spinal cord involvement. In any case, I would have expected my GP or Neuro-Ep to have referred me to a specialist if that were a possibility. I can't be the only one who has ever had this problem. Aren't they supposed to know either through personal experience with other patients, consultation with colleagues, or a literature search? Bob |
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