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For two years I have been having electric shocks in my arms and hands, muscle twitches all over, and excruciating stabbing pains in my thighs and calves. This week I was finally diagnosed with Cramp Fasciculation Syndrome. I would like to hear from you if you have been diagnosed with CFS. Thanks
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I feel your pain! I have had Fibromyalgia & Restless Leg Syndrome for years. But, I was also recently diagnosed with Cramp Fasciculation Syndrome. My symptoms sound very similar to yours. Over the past year my neurological symptoms have become increasingly more problematic & debilitating. Any walking or exercise had become extremely difficult and painful. The muscles in my legs have become are very tight, hard (previously referred to as muscle spasticity). I was experience terrible muscle cramps, muscle twitches, pins & needles etc.
Nevertheless, I was recently referred to a neurologist, at a prominent teaching university. After going through several tests, I was given the diagnosed of Cramp Fasciculation Syndrome and prescribed a new medication. It's still early but I am not sure if this new medication is actually helping. My foot & leg pain has remained (possibly worsened) and I still feel excruciating stabbing pains in my thighs, calves and feet. But, I have noticed an increase in my flexibility & stride since I started taking the medication. Having a more normal stride is definitely a plus! I still have the other bothersome symptoms that you described. What were you advised? Medication? Therapies?
What medication are you taking ? I am taking Carbamazepine and Gabapentin. My pain is better, but still pretty bad. I tried TENS and acupuncture, but no relief.
Hi
I was diagnosed as a man of 40 with cfs about 3 years ago and since then with fibomyalgia.
I found that i reacted really badly with gabapentin and carmazapan and since then it has been a real learning curve with knowing what medication to take and what exercise.
would really like to chat to others as this is such a rare disease and no one seems to have heard of it.
I was diagnoised with Cramp Fasiculation Syndrome in 2006 at the Mayo Clinic in Scottsdale, AZ. I have had cramps and fasciculations for about 5 years now and they are now moving to my thighs, back and left arm. I started with eye twitching and numb lips..The Mayo Clinic recommended dilantin but never could get theraputic on either dilantin or tegretal..I now take xanaflex and flexerial, sometimes baclofen, and pain meds...I have lots of leg pain and now starting the back pain. The stabbing pain is the worst, especially in the back. My endurance is very poor and I can't exercise very much, but would like to find something I can do to help the movement. Do you know anything that works? Can anyone put a trigger with what brings out such cramps or pain? I have never been able to. It is always painful to change positions, ie...legs curled as in sitting to straightening like standing..is it the same for anyone else? Do you have trouble with fatigue? Sorry I ramble, would love to hear from anyone.
I have read that page before, PNH...and I could have written it...my symptoms are those excatly, except they are really scaring me now cause they are getting worse and spreading. Where does this lead?
Hi....today I was diagnosed with PNH. I have been looking for answers for 15 years now. I gave up 8 years ago when they kept saying it was stress and it was me. I recently decided that because of the continuiation of it I would persue it again. It was quite the relief to know it wasn't in my head and there is really something wrong. I know I wake up feeling like I'm 80 years old and I know that I'm finally ready to get on with my life. I have started excersising and it has helped tremendously on the "big cramps" the debilatating ones. Now they are less frequent and are not so bad. I will start taking a medicine tonight to see if it helps the symptoms. I hope I helped some and I hope we can help eachother through this rare and confusing disorder!
I was Diagnosed with Benign Fasiculation Syndrom in May 08 and then Cramp Fasiculation Syndrome in Nov 08. Both times the Nerologist perfomed numerous blood work, emg, and MRI. For a while I kept a journal of all my activities to include exercise, food, sleep, twitches and cramps. I noticed that for me the twitches were most heavy in my tricepts and quadracepts; however, they appear all over my body. Most of my cramps are in my forearms and lats. The one thing that the journal taught me was that the more food you eat the worse the symptoms appear. Also, the more caffiene and alcohal the worse and longer the symptoms last. Example, if I consume canfiene, the effects linger for about three days (strong twitches & cramps). What I have found that helps is eating foods high in antioxidents along with staying well hydrated. I have learned that I have to keep on a strict regiment to keep the twitches and cramps at a minimum. If I indulge in the foods I use to like, the twitches and cramps increase dramatically. My daily regiment includes the follwoing; lots of water, 1 gatorade a day, one/two glasses of V8 juice a day,vitaspice pills (6each day) and granule bee pollen. I also usually eat one banana, orange plum, raw carrots, red cherrie tomoatoes. Oh, I forgot to say that the neurologist prescribed dilantin, but I have never taken it. The side affects are to great for more to take that risk. I would rather keep eating my healthy diet than to take dilatin. I am also interested if anyone had the sypmtoms appear after taking antibiotics. I noticed mine after taking ciproflaxin. I came across something called the FLOX report that really opened my eyes. As a matter of fact, it described so much of what I am going through to include time lines etc. I am very interested to hear of similar stories...also maybe how certain foods may work or what makes things worse. Mark
Supermom and Antony
BFS and PNH are pretty well the same as Isaac Syndrome which I was diagnosed with in February this year.
There is an excellent thread here on NORD under Isaacs Syndrome containing posts from people suffering the same symptoms and frustrations as you both.
I hope you can join us there. You and your input would be most welcome.
Rick
Sydney Australia
I just got your reply to my post about CFS. I had forgotten the email profile I was using when I joined Inspire.
I am very interested in your findings about caffeine and alcohol. I enjoy both in large quantities.
Currently I am on Lyrica, Gabapentin, Dilantin, and Lamotrigene. Needless to say I have turned into a zombie. I am 55 years old and never took prescription drugs until last year. Now I feel like a toxic waste dump. A few weeks ago I decided to start cutting back on my meds, very gradually so as not to suffer sudden withdrawl symptoms, which for some of these drugs can be fatal. After cutting my meds to half I started to experience severe stabbing pains and muscle cramps all over my body. The symptoms were much worse then ever before. Now my doctor has actually increased my dosages on some of my meds.
I will try youe diet and stop the caffeine and alcohol completely. I hope it works. The drugs are killing me but I can't stand the pain without them.
I used to have chronic bronchitis. I took cipro 3 or 4 times a year for a decade. In 2004 I broke the tenden on my right arm that attaches my bicep to the inside of my elbow. The muscle snapped and went up inside my shoulder area. I needed surgery to reattach it . Two years later I started having terrible muscle spasms all over my body, then cramps and electric shocks. Now I am completely debilitated by stabbing pains and muscle spasms. The drugs I take have terrible side effects. Your post is very interesting indeed. I will talk to my neurologist about what you found. Thanks much.
Grif, the most common side affect of Cipro in a torn tendon. I hope you do present what I mentioned about diet to your Dr.... My first neurologist gave me web sites about BFS and in one of the sites it described about eating foods high in antioxidents. The food high in antioxidents help capture the free radicals which may make your muscles twitch. When I read this it helped bring my journal into perspective. The websites also mentioned the effects of caffien, alcahol, and sugar. Again, the information gathered further helped me make sense of my journals. The second Dr I saw, Dr Shin Ho out of UAB (Alabama), who is world reknown for his expertise in neurology (ALS, MS, etc...)did not have any comments on my diet. He is the one that prescribed Dilatin. I also told him about the FLOX report and he had no comments. Attached is the web site to the FLOX report. The report is quite lengthy, but is a good read. I mostly focused on the parts that dealt with my symptoms. http://www.fluoroquinolones.org/ You will find out that after taking CIPRO it can take from a few weeks to several years before receiving your first side affects. Mine was initially and then subsided and then flared back up 1.5 years later....I have symptoms of muscle twitches, cramps, numbness in my fingers, and pins and needles. The numbness and pins and needles have went away but I still have the twitches and muscle cramps. I will admit the longer I stay with my diet the less harsh the symptoms are. What I mean is that I still have the cramps and twitches, but they are at what I consider a minimum to what they can be. If I relax on my diet or stray from it, the symptoms all come back stronger. When they come back stronger I quickly go back to my regiment. I hope this helps and I would consider trying it. For me it takes a good several days to a week befoe I see any type of releif. Good luck and keep in toach and let me know how you are doing. I will keep you in my prayers. Mark
Thanks Mark. You have given me a lot of research to do and new hope. I am on so many medications. I feel lousy all the time from the side effects and yet I still have terrible nerve pain and muscle cramps. I will start the no caffeine / no alcohol / high anti oxidant diet and I will make an extra effort to stay hydrated. I like your idea of keeping a journal too. I see my neurologist on February 5. I will tell him about your diet and cipro theory. Honestly, I must have taken cipro dozens of times over the years.
Thanks for your replies and support. I appreciate it very much.
I've noticed that most of the responses and research that I have done have been from male. It might just be an overlook on my part but have you met a female with this? My dr also wanted me to go to UAB but of course the insurance wouldnt allow me to be seen out of state. I went to Emory and they didn't give me much information. From all the research that I have read and from the medicine information it all says to stop cafiene and alcohol. Today is day two on medicine and no cafiene and I have had little to no spasms and cramps for the first time in years. The stabing pains you talk about I also have. I also believe that it makes me choke on food all the time. The more research I do the more I see that all the symptoms I thought was cus of something else was because of this disorder. I also believe its more common than we think. I just wish I could go to a doctor that knew more about it. I was given a emg and tested positive for this disorder. Were you guys tested for it specifically? I am taking oxcarbazeine and I haven't heard any of you say that you have taken that.
Supermom
If you do a Google on Peripheral Nerve Hyperexcitabilty
there is an excellent site first entry top of the page
Explains most everything also check the links to lots of other information. Log onto About the Author at the top of the Page as well.
Rick
Sydney Australia
Yes this is a good site, but it seems to me that all of these disorders are so similar that the doctor will diagnose what he feels that day. This is why I asked were you tested specifically? The test they did on me, did it say that this is the disorder I have? They all seem very similar and almost the same. I was wondering if anyone here was told by their doctor that this is what they have and the test we did was positive? And from the reading it seems like this is more a theory rather than a cause.
My understanding is that PNH has four phases or points on a scale of progression from mild to worse.
1. Benign Cramp Fasciculation Syndrome.
2. Cramp Fasciculation Syndrome.
3. Isaacs Syndrome.
4. Morvan's Syndrome.
And to muddy the waters even more, some doctors use the term Neuromytonia in their diagnosis. Based on my research its all the same. Please correct me if I am mistaken. I think its important to understand what disease we have and to refer to it correctly when dealing with doctors and insurance companies.
G'day Supermom and Griff
From what I have read, since I was diagnosed with
Isaac Syndrome / Neuromytonia, all those mentioned by Griff except Morvans, are one of the same and you might want to add Peripheral Nerve Hyperexcitability Syndrome and Continuous Muscle Fibre Activity.
My Diagnosis was made by EMG, EEG, Physical Presentation & Lumbar Puncture - to discount an underlying Cancer such as Thymoma or Small Cell Lung Cancer,
Also Cat Scan, Pet Scan & Blood Cancer Markers were carried out as these syndromes in some cases can precede a cancer by up to 4 years.
So Isaac Syndrome etc can't be diagnosed with just one test.
Nearly all these topics have been dicussed on the Isaacs site that I mentioned previously.
Kind Regards
Rick
Sydney Australia
Hey everyone, I can totally relate to the same stabbing, tightness, electric pain. I know i am not crazy for 14 yrs. now started with blindness totally for 3 months then up to 2 yrs ago just mild symptoms of weakness a couple of days out of the month. Felt like a truck had ran over me. with one day rest it would improve. NOW for the last 2 yrs it has been these extreme pain symptoms. Lyrica helped tremendously up till a couple of months ago. Now its like severe again it started in my arms and legs now its up my lower back also my neck jaw and face gets very tight. My emg is good eeg showed a slow in conduciton what ever the heck that means. My blood work has always been neg except for ana once being 740. I was just tested for stiff person syndrome and that blood work was neg. It is interfering with work as to some days the pain and stiffness is to great. This other CFS also is interesting as i wil read up on it. Thanks for writing. Any help would be appreciated.
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