I am a 49 year old male diagnosed with neuropathy (feet) and fasciculations about 6 years ago (primarily in the calves and legs). Although the doctors have determined the cause to be idiopathic, I have a past history of heavy alcohol use that I believe may be a contributing factor. I am currently on Neurotin (800mg), Klonopin (1/2 mg about once a week (when the fasciculations are bad), and Baclofen (10mg) 2-3 times a day. I exercise regularly (about 5 hours per week) and have abstained from drinking for several years. I eat a healthy diet and take extra B-1, B-6, (about 5mg a day) and B-12 (the methyl sublingual version). I have tried quinine, heating pads, Capsine cream, and stretching along with the meds. I have been to 7 doctors (including Mayo Scottsdale and Baylor in Houston) with no help. ALS, MS, and MD have been ruled out. In the past year the condition has grown significantly worse to the point where I now experience constant 24 hour a day cramping and muscle pain in all of my legs and feet (arches). The pain is most severe at night. Some days the pain in so severe that I just want to quit the battle. I am desperate for alternative ideas/medications to make life bearable again. Thank you so much for your time!
Painful neuropathies are a common disorder but unfortunately are difficult to treat. Although you may have tried this, elavil has been successful with some of our patients as well as tegretol and other antiepileptic medications. Zanaflex has also been helpful for some patients, but is sedating. Intrathecal baclofen is a pump system that delivers baclofen directly to the spinal fluid in your back. This has also helped severe patients, but can cause weakness in the legs as a temporary side effect. In the last few years, we've seen (both in our clinic and the medical literature) imporvement of both spasticity and pain with botox injections. If you've tried everything in terms of meds, this may be the way to go. Good luck.
I am not as bad as you, thank goodness, but my heart goes out to you and I have similar symptoms. My legs spasm during the day, more than cramp, but the calves do cramp at night. This has gone on two years. The muscles in my calves constantly twitch. I have been told I have nothing bad, but it is a very odd symptom. I would suggest two things. I sleep on my stomach with my legs hanging off the bed and feet pointed downwards. That constant stretch keeps my calves from cramping. The other thing is there is a Dr. Caress at Wake Forest Baptist Medical Center who specializes in cramps. He is starting a botox project for constant cramping. He also prescripted a kind of splint for me to keep on my legs and keep a constant stretch in them. I think he may be helpful to you. Good Luck.
i too have had the exact symptoms as you describe above- i also have had every test in the book and come to find out i am the most ******* healthy person on the planet and there is nothing wrong with me. I twitch 24/7 all over- you can see the muscles popping out of shirt and pants on somedays- my lip twicthes- my eye twitches- my *** twitches(you try to explain that one). Been to several docs that all want to do the same tests(very expensive tests) lab, mri, ekg, emg, eeg, spinal tap, stregth- etc etc- ive finally given up and cannot afford any more time off work or tests- each doc contradicts the other. one says i have neuropathy- the other says i have benign fasciculation syndrome(whatever- just call it ******* annoying cramping syndrome and spare me the fancy names). I still take neurontin to control the cramping which helps a little but have found ways around the cramps like buying better shoes, wearing gel insoles, taking it a little easier when i feel the cramps coming on, etc etc... this is probably not what you wanted to hear but this is my own personal experience and if you go through all of these logs not a single person has ever found anything definetly wrong with them and they just have to live with it inspite of all the tests and docs- these people are just more frustrated and poorer than if they would have just learned to live with it in the first place- just live your life and try to get through the day as best as you can- thats what i have done. michael
I have sarcoidosis with a peripheral neuropathy. I have had it for almost 15 years (I'm 29 now) and it has gotten worse. For years I had unexplained muscle cramps, skin tenderness, sporatic pains, etc... Finally had an EMG (hello, that was painful) and was told I have a neuropathy. I feel your pain, and wish everyone my best in coping with this annoying condition. My neurologist wants me to go on Neurontin. Anyone have bad side effects from this? or good? Feel free to write ***@**** Bye for now and feel good.
Thanks to everyone for the feedback! I appreciate the suggestions. God bless the Cleveland Clinic and the doctors that answer the e-mails. There are times when I feel like I am struggling with this problem alone and it really helps to "meet" others that are going through the same thing and to get another opinion from a doctor (although it makes me sad to hear the pain that PN causes). I tried Tegretal and Elavil some time ago, but I am willing to give them both a second try. I hate to go to the pump or Botox, as those alternatives seem pretty drastic (although as things continue to get worse, the closer I get to taking those steps).
Does anyone have any recommendations for the constant muscle ache? At times it seems to be worse than the cramps - some nights it wakes me every hour all night long. I take Calcium, Potassium, and Magnesium, but it doesn't seem to help. I also know that taking the B vitamins can help the nerves, but B-6 can cause Neuropathy. I currently take about 5mg B-6 per day - is this too much?
The pain and frustration is obvious in everyone's reply - science certainly doesn't seem to have an answer to this horrible problem (and so far, my prayers aren't working either). Thanks for the suggestion of sleeping on the stomach - that seemed to help some. I have found that I can sleep on my back/side if I wear my tennis shoes to bed. I am also going to try to e-mail Dr Caress for suggestions. I don't think I can afford to make a trip to see him, but maybe he will offer suggestions by e-mail. He also may know someone locally that can help.
As for Neurotin, I have been taking it for about 5 years. All the doctors I have gone to assure me that it is a very benign drug. It helped my fasciculations for about a year, but the effect on them has slowly gone away. I still find it useful to help me sleep and for the PN pain. It can make you groggy though - I had bad side effects for a few days, but they went away after that. Now I take it only at night.
I have myofascial spasm syndrome. Which is nothing compared to what you suffer. It is unfortunate your prayers arent being answered. You endure day to day and take no painless breath for granted. There is something to be said for having faith in an ailment that makes life livable. I say you find a Latter Day Saint or (mormon) bishop or missionaries and ask for a blessing. what is the worst that could happen. You seem nearly desperate. If i gave you my own heart it would not be as valuable to you as this advice. I have seen my own father work a miracle in my little brother with a blessing and I was supposed to be blind after battery acid burned my eyes as a child. with a blessing from my father i can see with no problems. you probably are thinking some crazy person i must be but no, i am just a 22 yr old college student who will never give up hope for anyone. Ali
Clete--Have you had any back problems and have you had those checked. I have the same symptoms you have, attributed to perm. nerve damage. OTC vitamins, supplements, minerals, all failed. The only meds that worked for me were Valium and Zanaflex.
Firstly I am really genuinely sorry for anyone in pain and anyone whose prayers to God for healing have not been answered.. but prayers being answered are conditional, to even humbleness, faith in Jesus Christ, persistence, and living righteously too. as well as wanting to be healed.. If your prayers did not work the first time do try again..keep on trying.. or find someone whose prayers works and do ask them to pray for you.
I married a nurse thinking that would I would next be guaranteed of good care and good health service, it did neither.. she also really did not not too much about medicine, sickness.. nor does it seem many nurses and doctors too sadly.
Next I found myself with some strange symptoms.. twitching left eye.. .. stomach pains and bloating.. continual moist hair on my head... eventually a heart beat of 122 beats per minute.. severe continual cramps in my legs..
Here is what I have learned,experienced.. most doctors and nurses are still pretentious, they firstly themselves do know very little.. and if the doctor is not good then do look elsewhere for a better one till you find one..
Jesus promised me than when the doctors cannot do their part he will do his next.. and he does.
I have had muscle cramping/spasms for about 10 years. Until about 2 years ago, little would help. Initially, the cramping was only in my feet, but then went to my legs, hands (I could not hold anything or would drop whatever was in my hands) and eventually into my back.
I have been on Dilantin for about 2 years and I only experience cramping a couple of times a month, unless I accidentally miss a dose or am in a high altitude (in high altitudes, including flying, I have to increase the dosage). This medication made such an incredible difference in my life as the pain was at times so agonizing.
Don't lose hope. I encourage you to continue searching for what will alleviate your pain.
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