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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
Exercise Surgery Back pain Meditation Spasticity Muscle cramps Anxiety Hernia Lupus Bronchitis Tegretol Fibromyalgia Stress Diamox Sciatica Gabapentin Cipro Isaac's syndrome Stroke Fever Tinnitus Weakness ALS Insomnia Lung cancer Cancer Chronic bronchitis Klonopin Neuromyotonia Soma Baclofen Carbamazepine Dilantin Peripheral neuropathy Conversion disorder Acupuncture Osteoarthritis GERD Lyme disease Sweating Pain Memory Lyrica Oxcarbazepine Depression Floaters
oh - also my mother recently experienced blindness in one eye which comes and goes. And she woke up one morning about a year ago, right before the major cramping started, with legs the size of big tree trunks - major swelling.
I am so moved by all of your stories. I am online researchign for my mother, who is 60 yrs old and has been told she has fibromyalgia for at least 10 yrs now. However, her symptoms are puzzling her docs in her small town in Iowa. They listen to her tell stories about her muscles cramping and literally freezing up, making her fall down, and they sympathize but basically give her the big "I don't know must be your fibromyalgia". She also has very severe insomnia, somewhat related I suppose to the stabbing pains in her legs she feels all night long. Exercise definitely exacerbates the cramping. She can't walk more than a block or two without her legs freezing up and being in so much pain she can't get up.
After reading for hours about CFS I am so certain this is what she has.
What should her first step be? Are there specific tests for this disorder? Is it genetic, or can it be brought on somehow?
I appreciate your help in advance
Gina
The stapedius muscle is a striated muscle (like a voluntary muscle) that is under reflex control (like your quadraceps muscle under deep tendon reflex control when your doctor taps your knee for a reflex check). It is not a smooth muscle under autonomic control like your gut muscles or bronchial muscles.
Dr David
Dr. David,
This is very interesting. So, does that mean that BCFS can affect both voluntary and involuntary muscles? Or is the muscle in the ear that you mention a voluntary muscle?
Thanks,
The "ear thing" is the stapedius muscle having a cramp or a fasciculation. It lives in the middle ear and it's job is to tighten the tympanic membrane in case of loud noise to prevent ear drum excessive movement and rupture.
Another weird sensation people get with cramp/fasciculation or Isaac's syndrome is diaphragm muscle cramp/fasciculation between the chest and abdomen. It gives chest pain in the case of a cramp or feels like palpitations in the case of fasciculations. It can be quieted by taking a deep breath however.
Dr David
Earthing,
Yes, I was excited to hear the news about the retrovirus. My neurologist diagnosed me as having either Benign Fasciculation Syndrome or Fibromyalgia or both. (In other words, they don't know). But it will be interesting to see where this retrovirus research leads. Hopefully to a cure!
Simon,
Thanks for doing the survey. Yes, I have had the ear thing sometimes too, pain and a full feeling inside ears and burning outside. The doctor could find nothing wrong.
I was wondering if you have joint pain and joint cracking, popping?
Good luck coping with all the weird symptoms.
Hi, Since chronic fatigue came up, I was wondering if everyone heard about the recent possible link of a retrovirus with it. I've also read that they've found this retrovirus in the blood of people with fibromyalgia. I think it's an exciting find, since there are so many overlapping symptoms with chronic fatigue, fibromyalgia, cramp-fasciculation, Isaac's, and even Stiff Person syndrome.. Wonder if they could all be various reflections of how people respond to this virus (or another type of infection?). I hope this link works:
http://www.nih.gov/news/health/oct2009/nci-08.htm
Junipurr Hi
Thanks for doing the survey. I have 8 replies so far - some of these are people who have visited but not completed the survey. Just as a reminder for anyone new who comes across this post:
http://www.surveymonkey.com/s.aspx?sm=ajF_2f1DDmRIm_2bcOzBPUpeGg_3d_3d
As far as symptoms are concerned, I started with Globus. First symptom I had, sitting at this very computer. Thought "what the hell was that" very frightening at the time. I have subsequently been diagnosed with Hiatus hernia and GERD - acid refluxing into the food pipe. My Globus has gone away completely since I tipped the bed up on bricks and started taking an anti-reflux antacid (called Gaviscon over here in the UK). So don't know whether it was incidental or connected. I guess it might have been tapping in to the abnormal autonomics that seems to come with BCFS. I now have more or less continuous pain around the voice box which gives me ear ache now and again. Ear Nose and Throat people have stuck their camera down and found nothing. [shrug] The worry that there might be something really nasty going on is, of course, always there. I have been trying to use mindfulness as a coping strategy. Helps lots. (Google Jon Kabat-zinn). I too get a range of other strange symptoms - thrumming in the back of my head, tingles, caterpillars wandering around my skin. I guess the difficulty we all face is what does it all mean and what is benign and what is important to have followed-up. The truth is that Physicians (David excepted) don't have a great deal of background knowledge and so struggle themselves, but find it difficult to say so.
Just as an aside, I kept being distracted by my mobile the other day. I thought I had it on silent and that it kept vibrating in my pocket. Who is sending me all these messages I thought. Then my mobile, which was in my coat, hanging on the hook, rang. The thrumming in my thigh lasted all day - every thirty seconds or so and was gone when I awoke the next morning!
Regards
Simon
Junipurr and Mike 999
My throat actually tightens up, feels like there is a lump in it, and loses some swallowing coordination so I have to double swallow. It can last hours to days and is intermittent.
Thanks for the information about fasciculations in Lyme disease. This means it is not just causing neuropathy but is causing peripheral nerve hyperexcitabiltiy Neuromyotonia) or direct muscle sarcolemma effects (myotonia). I thought it just caused neuropathy.
Dr David
Dr. David,
Thanks so much for the additional information.
When you have difficulty swallowing, does your throat feel tightened up or do you feel as though one of your throat muscles has gone limp? How long does this generally last?
I am not sure if my neurologist has tested me for the VGKC antibody. I will ask him at my next visit.
I frequently have cold hands and feet along with the parethesias and seem much less able to tolerate the cold in general. I also get periodic night sweats, but that could be related to hormonal changes in my case.
I have joint pain of varying degrees, especially in my hands. Joints in wrists, shoulders, knees and ankles pop and feel loose. Do you have a problem with that?
I am grateful to receive any information I can get my hands on since I have been unable to get very much information or help from my physicians.
Thanks!
The assumption you portray regarding Lyme disease caused by the "B. bergdorferi spirochete" NOT causing fasiculations is wrong. That is an incorrect assumption. Chronic", not just acute lyme can and often does have fasiculations.
Junipurr,
Rick and I are bothered the most by our globus pharyngeus out of all of our symptoms. It is a common feature of cramp fasciculation syndrome/isaac's syndrome. One gets the throat lump sensation from laryngeal muscle dyssynergy. There can also be difficulty swallowing and even need for double swallowing. It waxes and wanes. There can be aspiration.
The more sensory symptoms, paresthesias, and autonomic nervous system symptoms you have, the more the diagnosis should be described as Isaac's syndrome instead of cramp fasciculation syndrome, even with negative VGKC antibody.
I have got cold parethesias, cold intolerance, tarsal tunnel syndrome, excessively warm skin which loses heat, and tinnitus. The most prominent autonomic symptom people with this get is sweating( hyperhidrosis).
Dr David
Hello BCFS folks,
I too have been given this diagnosis after over a year of exhaustive testing by two neurologists (MRI, Multiple EMGs, blood & urine tests). I'm not entirely convinced that this is an accurate diagnosis, but I'm at a dead-end right now.
I have the symptoms that others have described including wide-spread fascilations, cramping pain in limbs, tingling/burning in hands and feet, jerking limbs at night.
I was wondering if others with this diagnosis have also experienced sensory symptoms? For example, I developed tinnitus in one ear. I had some very odd visual irregularities at onset including one incident of double vision, and other visual distortions. I still see swirling dots in my peripheral vision in bright sunlight (not just floaters). I sometimes have a strobing effect when I turn out a light. I'm also wondering if anyone else has globus
(lump in throat sensation)?
I agree that "benign" is a misnomer. I now find walking any distance difficult. I used to be a quite active person and now I get very little exercise.
Simon, I filled out your survey. Hopefully you have received it.
Best wishes to all of you,
Justn.
Greetings
If you go to the thread below, mentioned by Doctor David, contact Molly who posts there - she has the results of a survey many of us did a year or so ago.
Your right, there has not been a lot of research done.
Until it is recognised that this type of Syndrome exits more in the Community than is presently thought, I doubt if much more reseach will be carried out. We can only hope. I am always looking for the Silver Bullet. There are many papers - you just have to dig for
them. Try the Isaac Syndrome Neuromyotonia World chat Board. There is a good thread there - Isaacs vs CFS. Plus lots of other good information.
You could also search Professor Angela Vincent - she has done or been associated with all the major research.
Also search Peripheral Nerve Hyperexcitability.
I have a lot of good papers in my book marks - if you want them send me an email.
Good luck with your survey.
Kind Regards
Rick
Sydney Australia
Hi All
I'm a health psychologist with a recent diagnosis of BC-FS. My neurologist describes it as the low end of a continuum of neuromyotonia. I think perhaps they should put the Benign in quotes.
Anyway, as I'm sure you have all found out, there is but little research or information on BC-FS. So I thought I'd engage in a little finding out myself. I have set up a simple and easy to complete questionnaire at the link below. I'd be most grateful if you would consider completing it. I will post the results and/or email them out individually if I get enough responses. It is all anonymous.
Regards
Simon
http://www.surveymonkey.com/s.aspx?sm=ajF_2f1DDmRIm_2bcOzBPUpeGg_3d_3d
Zebco,
Check out the huge 1100 reply thread on inspire.com on Isaac's syndrome/cramp fasciculation syndrome at
http://www.inspire.com/groups/rare-disease/discussion/isaacs-syndrome/
It will give you a general idea of the spectrum of symptoms including chronic fatigue. Since these syndromes are often initiated by viral syndromes or auto immune reactions it is hard to separate out which is causing the fatigue. By the way, don't forget the possible use of Diamox as a first drug in CFS, rather than Baclofen which is used in spastic disorders more than in CFS and can cause fatigue. You can add Tegretol to the Diamox with little risk of fatigue or sedation.
Dr. David
Thank you for you response Dr. David. I have very visual muscle facsiculations under my skin in both legs. I had a plethmograpy done and the person who was doing the test saw them and said I should video them to show my neurologist. With a 3 hr. mri w/contrast of my brain and spine and the pleth test, a lot of blood work, 2 emg's, the neurologist has given me a diagnosis of CFS. Am taking Baclofen currently, 5 mg. 2x daily. The cramping now is so unsettling. Will try the Gatorage and V-8. My electrolytes and potassium is fine. I'm noticing anxiety amps the spasms big time. Odd, though, I have the spasms upon awakening, in both legs and now have noticed it has moved up to my arms, lips and eyes. We have just had a transmission blow up on our dodge truck and watching our retirement dwindle in our stocks. I just pray to God to show me the way and I am very happy to have found this site.
I have to wonder if I had not had Lyme disease, would I have this? Seeing all of you, I am inclined to think yes, since no-one else here has been dx'd with lyme earlier. Am I wrong in that?
There is some wonderful advice here for this and If anyone would like to talk about it I would welcome it. My neurologist has given me a referrel to a local pain clinic, but reading these posts, I may just stick with the baclofen. The flexeral really makes the spasms better, but the next day I feel really crabby. Have gone through tons of epsom salts, massaging and more.
Fatigue is a big factor for me. Is that part of this? I want to get on with my life as I feel 57 is too young to start stopping.......I still feel 25 inside....Now if only my legs would stop spasming....Can someone shed some light on this for me? Prayers for all....thanks again, Dr. David......Oh, if you could see the video of my legs, which goes down along the inside of my feet, it's spooky looking. My husband describes it as "her legs look like frog legs being fried in a pan!!" Funny guy, he is. Peace.....
Zebco
The key differential diagnostic feature is whether there are
muscle fasciculations seen under the skin, at least sometimes. If so, then you have cramp fasciculation syndrome or even Isaac's syndrome ( if you have autonomic symptoms and paresthesias in addition). Stiff Man syndrome and chronic Lyme disease do not have fasciculations.
Dr David (an MD with cfs)
Dr David (an MD with CFS)
This is my first post. I was dx'd with lyme disease in April of last year. I was put into the hospital 2 weeks after my tick bite and had a 104 fever and all the stuff that comes with lyme disease. I was lucky to have a smart doctor who did the right testing while I was in the hospital and was hooked up to IV abx. and demoral since the pain was so sever.
Forward to now...I have had infections afer infections since and now after all my MRI's, cat scans, blood work ups, ENT'S, and this is my second neurologist and now he said he is leaning toward BFCS...Since Feb. I have had such terrible leg and foot spasms, pain and fatigue. I am so glad to find this sight. This is horrible. I see my neuro on the 22nd of this month, where I hope he has my dx.
My question is: Is this BFCS, or is it Chronic Lyme which is very controversal.......He also mentions Stiff Person Syndrome, but said he was leaning toward BFCS. I can live with anything if I can know what it is. I am 57 and never thought I would feel so horrible.
Thank you for all your posts. I'll let you know what happens when I have my next appt. He has me on Lyrica, but the weight gain thing.....can't deal....no,no,no. and last appt. tired klonopin, 0.5 mg. once a night.
He seems very nice and is a young dr. What kind of meds should I suggest "we" try. What has worked most for you...Is Baclofen a good way for the spasms to stop. They leave me in pain and I can't stand for long periods of time. I'm finding swelling of my ankels and fee which is very unusual for me. So I stopped taking the Lyrica.......can someone give me some medicine advice to try and I can suggest it to him..I realize it's different for everyone.
I would appreciate any kind of response. I will keep all of you in my prayers and know why God puts people in certain places at certain time. Peace......
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