CRAMP FASICULATION SYNDROME - how many of you have SEVERE PAIN and CRAMPS?

shannonollis
  • By shannonollis · October 12, 2012 at 2:46 pm · 55 replies
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Please help me, someone. My name is Shannon Ollis. I'm a 36yr old woman who was diagnosed with Cramp Fasciculation Syndrome a few years ago. The problem is...I AM GETTING SO FRUSTRATED THAT I'M LOSING MY MIND!!

I cramp and twitch every day. That's fine, I'm used to it now. Usually they are sudden and last for just a few minutes before slowly subsiding. (10-30mins)

HOWEVER...a few times a week, I have bad 'spells.' I differentiate between my 'normal cramps' and 'spells' not by intensity, but by duration. A bad spell will last for a couple of hours, and movement is very limited because my muscles get 'locked,' for lack of a better description. Yes, I can move, although sudden changes in positioning myself result in triggering different muscles. So the best I can do during a spell (aside from pop a Tizanidine and Klonopin or Valium) is find a bearable position and hold on tight (and generally end up in funky contorted positions lol). The pain is usually about an 8, though sometimes it skyrockets all the way up to a 9.5, while other times it's a bearable 6. But it's uncomfortable and painful regardless. This affects my legs, feet, and toes, mostly. Though it also causes the muscles in my back and sides to cramp (that's when I'm REALLY a sight to behold lol). It sucks. It hurts. The pain is immense. It's like a charlie horse times 10. My toes curl back, under, apart...it just looks so unnatural. Sometimes my feet twist in such a manner from intense cramps that it looks as though my foot is going to just rip off of my ankle.

And then there are the episodes. An 'episode' differs from a 'spell' in that it lasts for more than a couple hours, and I eventually reach my breaking point. I will have already taken Valium and Tizanidine. I'll chomp the damn pills even. Not that I recommend that anyone else does the same -- but for me, desperate times call for desperate measures. Anyways...during an episode, all I can do is wait until I've reached the point of passing out, and then go to an ER for an injection of Valium and/or Ativan, depending on what I already have in my system. Unfortunately, the doctors tend to want to inject me with pain meds and while they help me feel better, they do NOT stop the cramps. So what's the point in poisoning myself with powerful narcotics? That's beside the point, though...what I'm really struggling with here is a lack of understanding this disorder.

My neurologist recently told me that my symptoms are "unusual for Cramp Fasciculation Syndrome," yet what is 'normal'a for a RARE disease that hasn't been studied well? Plus, he admitted that he's only ever seen this once - back when he was still in training. So who is HE to say what IS or IS NOT 'NORMAL?' It makes me feel like crap, like I'm not being taken seriously, like I'm overexaggerating the severity of pain and duration or symptoms. What he and other doctors are overlooking is that each case is different. I have a HIGH threshold for pain. I've actually done body suspensions and pulls as a way to strengthen my tolerance for pain. Hanging from hooks in your flesh hurts. But not as bad as the cramps.

My point is...I am really struggling right now. A doctor told me yesterday that you can take 10 people with the same problem, and each person will present with different symptoms. True. Yes. But then he proceeded to use an example in which one person wants help because he's in pain and debilitated while the other wants help because he is in pain when he falls down while playing tennis. His point was to say that some people can handle this better than others, while others 'allow' it to devastate their lives. I am neither. I WANT to work again, I have done EVERYTHING my neurologist has recommended; I have had multiple procedures and tests, surgery, and have accrued quite the medicine cabinet full of crap that doesn't help me.

All of these frustrations aside, my MAIN complaint (regarding doctors) is that I STILL feel like they aren't taking me seriously. I'm not asking for much...I want to know what it is to hike without cramping, I want to know what it's like to be a working mother, I want to be physically active again - active as in exercising for at least an hour a day. I don't want to be on all of this medicine, and I'm sick and tired of all the trial and error with medications. Try this, try that, pull off of this while adjusting to that, add this, etc etc etc!!!!! I AM SO FRUSTRATED AND I'M SOOO ANGRY THAT MY NEUROLOGIST CAN'T WRAP HIS HEAD AROUND THE FACT THAT, WHILE THE ONE OTHER PERSON HE'S SEEN WITH THIS DISORDER PRESENTED WITH SYMPTOMS THAT WEREN'T AS SEVERE AS WHAT I DESCRIBE, I...AM...IN...SERIOUS...PAIN!!!!!!!!!!!!!!!!!

It sucks...because I'm made to feel as though there's something wrong with me for telling doctors that my pain is SEVERE! It's depressing. But I'm NOT devastated by the idea that I have this disorder; I am a fighter -- I have done EVERYTHING my neurologist and other doctors have recommended! Including seeing a shrink because I was pretty convinced by my nonsympathetic and cold neurologist that maybe this is all in my head. The psychiatrist assured me that there is NOTHING WRONG WITH ME MENTALLY that would cause my body to cramp, with very visible strong twitches, shake, etc, without notice, in situations when I'm my happiest or saddest (in other words, my emotions aren't warping my perception of pain). Yes, I am in therapy for PTSD and I'm not ashamed to admit that (she is a psychologist, not a psychiatrist...the psychiatrist told me that he believes I am doing everything I can, that I am functioning mentally in such a manner that is healthy, that I have fight and spunk and I shouldn't allow what the doctors say to impact me negatively).

But I'm still at square one. Well, maybe two, but I'd like to be at square 100, the point at which I am able to function as a 'normal' person with this disorder does.

TO ANYONE WITH ISAAC'S/CRAMP FASCICULATION/NEUROMYOTONIA...PLEASE PLEASE PLEEEAAAASSSEEEE GIVE ME ADVICE! Please? I need to hear it from other people who actually have this type of disorder, whether or not you are in pain. I would just like to be able to walk in to my next neuro appointment with the testimony of others...I'd like to be able to say, "well there are X number of people who have the same diagnosis as me who also experience debilitating pain," OR I would like to say, "okay...so maybe it isn't Isaac's/IFS/whatever....so what else can this be?"

I get treated as though I AM the problem. I feel like I'm not being taken seriously and therefore, I can not and will not receive proper treatment. I have done EVERYTHING!! Oh, and another issue I have is that while the cramps are generally in my toes, feet, legs, & back...the twitches are all over my body. Literally! ALL OVER! Muscles in my face and jaw twitch, sometimes making it difficult for me to speak properly. Sometimes the muscles in my jaw tighten, causing me to clench with so much strength that I BREAK MY TEETH!! I can't control it (though now I will stuff a washcloth in my mouth, or my shirt when not at home).

I should end here...as I am sure you get my point. For more info on what I've been through and what medication regimens I have tried, I have another thread, entitled, "DIAGNOSED AT LAST......OR AM I?"

Know that I am a well-educated woman, I hold two degrees, neither of which I am using, and both of which I earned with honors. I busted my arse in college, with aspirations to continue my education and pursue either a master's or doctorate degree (and I have the grades and drive to have achieved that). I didn't bust my butt and work so hard only to end up like this. ALL I WANT IS TO FUNCTION WELL ENOUGH TO WORK (and work out).

OR...I at least want to know that I'm not the only one here debilitated by this disease. I could handle all of this much better just knowing that I'm not alone here, that others ARE having a similar experience. Not that I will be pleased to hear of your suffering....but it may give my unexperienced (with this type of rare disorder) neurologist some insight, and so I may have more insight as well.

Thank you for you time.

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55 replies    Reply

rickthurbon

Greetings Shannanolis
I just don't know where to to start, however probably the best thing to say is, I really really understand.
I was diagnosed with Isaac Syndrome/Neuromyotonia, Cramp Fasciculation Syndrome, Peripheral Nerve Hyperexcitabiltiy, what ever you want to call it.
These Syndromes are all out of the same basket. I am not a Doctor but can safely say if this is what you have been diagnosed with, your medication is way off the line and wrong.
You are not alone with your frustration this is a very misunderstood condition - the pain you are are suffering is real so don't feel isolated.
Your very accurate description is like me looking into a mirror.
Your best bet is to try and find a Doctor( Neurologist) who has some knowledge with your condition.
It's not rare, just misunderstood and misdiagnosed
Have you had an EMG ?
How did the Doctor come to your diagnosis?
If you want you can join our group Isaacs Neuromyotonia CFS World Chat Board - just google it.

Kind Regards
Rick
Sydney Australia

Soarsister

Do you guys have hypertrophic muscles as well? I am negative for Cramp Fasciculation Syndrome but have the same symptoms. Cramp all the time. EMG negative but if I move a certain way I will charley horse, my toes do the same as yours and I see my muscles jump like popcorn. But the muscles in my legs are like a body builder. Muscle biopsy shows no disease but he took the muscle from my arm...really wish he'd have taken it from my leg, but he says the disease is generalized. Anyway, I am bulking up and muscles are tight always...never relax never stop being have contracted. No relief.

betterlife4me

Shannonollis,

I'm so sorry for your pain.Muscle cramping usually means severe magnesium deficiency.What if you tried taking large doses of bioavailable magnesium.Sometimes people with cramping need very high does.Ancient minerals makes a great natural products with high magnesium and other trace minerals which it sounds like you need.Also Bone Renewal is a GREAT product high in many minerals that have helped my own muscle pain and stiffness.

I've suffered from extreme illness for many years fibromyalia,mysterious seizures,burning pain in bones, muscles and joins as well as severe chonic fatigue.Now I'm trying to help who i can as I've slowly found the pieces to my own illness.

Word for the wise...A special b12 called methylcobalamin(mb12)is a supplement many doctors do not want people to know about.Please Google It!! The nasal spray and lozenges work best.

rickthurbon

Soarsister
Like you my muscles are growing especially my calves. The Botox injection s I receive every 3 months helps with this.
I took 3 EMGs for me diagnosed by 3 different Doctors the 3rd knew what he was looking for and doing.
If you want to understand CFS and Neuromyotonia a little better just do a Google on Neuromyotnia the third or so on the page
by Doctor Paul Maddison in 2002 will give you a good idea its accurate and easy to uderstand.

Good Luck
Rick Sydney Australia

nadrida

I, too, have severe cramps in my legs and feet from time to time - those "charlie horse" cramps I have almost learned to sleep through - but it is the inner thigh cramps that send me screaming (the only pain I have ever had that even comes close is labor pains in childbirth) and hopping to the kitchen for tonic water, electrolytes, as in Emergen-C and powered Gatoraid; magnesium, calcium, and the natural 'medicine', Leg Cramp that you buy from a nutrition store. If you want I can give you the names of all the natural things I take.

A Chiropractor told me years ago that cramps are caused by an electrolyte imbalance. Also you need to stay hydrated. I have finally got it right most of the time because I haven't had more than just a touch - a minute or two - of cramps in months; I'm talking 6 or 7 months and that usually after a lot of exercise. I had to let up on the calcium. Now I eat a cup of plain yogurt w/cinnamon for breakfast and a couple of ounces of cheese w/fruit at night. It takes some experimentation to get it right.

Have you tried my remedies? Doctors just don't know about these things and seem uninterested. My very good doctor just looked at me with blank eyes when I described my horrible cramps. My daughter, a doctor who graduated from Albert Einstein Medical School in NY said she never! had a single class in nutrition. She also didn't have a clue how to advise me. With most doctors it's all about medicine, which may not be the answer.

beingcelestial

I have the cramps and twitches of unknown origin. My electrolytes and minerals are at appropriate levels. I have papillary thyroid cancer and a neuroendocrine carcinoid was found during endoscopy. My drs said to give it a year because it could be related to the thyCa.

Soarsister
  • By Soarsister
  • Reply 3465494 · In reply to 3462064 by rickthurbon
  • October 17, 2012 at 9:59 am
  • Report post

Thanks Rick!!! I am checking this out now, and will get back to you! I have been searching forever for answers!

Soarsister

Is it possible to have this and not mbe possitive on the test? I have every symptom and hypertrophic muscles but negative blood test and negative EMG.

Soarsister

shannonollis I got side tracked sorry I have add. I make this stuff that helps a little. I am going to put the recipe. it is no cure all by any means, but do you have anyone willing to help apply it? http://drmyhill.co.uk/wiki/Magnesium_cream_-_how_to_make_it_and_use_it

rickthurbon

Soarsister

Only 40% of people diagnosed with Isaacs / Neuromyotonia show positive to the blood test this is an accepted fact.
I saw two Neurologists who both did EMGS they told me nothing wrong.
The third Doctor who specialises in Muscles and Nerves had a positive reading to Isaacs he also is well aware
of what to look for.
I hear this over and over negative EMG to Isaacs then the patient finally finds a Neurologist that understands Mr Isaac
and the EMG requirements. The EMG specifics are all in the paper I mentioned by Paul Maddison.

Regards
Rick
Sydney Australia

nadrida
  • By nadrida
  • Reply 3467019 · In reply to 3454459 by rickthurbon
  • October 17, 2012 at 7:52 pm
  • Report post

What causes this? Surely there are some theories.

rickthurbon

Nadrida
Isaacs /Neuromyotonia can be caused by an underlying cancer usually Thymoma or Small Cell Lung Cancer, about 20% of the time.
Hereditary Form.
Autoimmune Acquired of unknown aetiology
Some people have suggested they acquired it after different forms of vaccination.
Mine was diagnosed as Autoimmune Acquired.?
Thats about as good as I can tell you.

Kind Regards
Rick
Sydney Australia

nadrida

Thanks, Rick. I get very concerned when I hear of anyone having severe cramps because I know how painful they are. As I said before, I have pretty much learned how to keep my cramps at bay by paying strict attention to electrolytes...even an overly salty meal will cause me to cramp. I have an aunt and uncle who both take a little vinegar each day to regulate their body PH. They think it helps keep cramps away. I wonder if there is some smart nutritionist out there who could shed some light on this - or put it to rest.

Soarsister

http://youtu.be/I2GEGt7fVXU

nadrida
  • By nadrida
  • Reply 3472308 · In reply to 3471189 by Soarsister
  • October 19, 2012 at 3:36 pm
  • Report post

What an amazing bunch of videos, especially the one or two with Dr. Kadry. Such a wonderful doctor. So, to relate this a little bit to the electrolyte problem I was talking about - it seems that there is something to the sodium/potassium channels. Thank you for this site and I would recommend it to all the people with this problem.

Joan412

I am over the age 70 speed bump, and I too have had this condition my whole life. So, long before medical tests were available, and even now, it's important for every sufferer to find out what makes the condition worse, what you are doing to trigger it off. It will not take the condition away, or cure it, but it can give some relief, the remainder has to come from meds.
Now since I can only speak from what works for me, each individual needs to evaluate themselves.
For instance, I have found that if I use a gasoline weed wacker, the frequency and speed of the vibration, does not allow the relaxation timing of my muscles to catch up with the contraction timing. Therefor after so many minutes, my arms go dead and not only can't I lift them, but they hurt, the fasulations begin, and this lasts for over a day.
If I would ride a motorcycle, same thing, but with differing muscles. Chemicals, second hand smoke or jet fuel/gasoline, have also triggered similar problems, as does the cold and extreme heat, but in differing ways, and also with differing muscles.
Unfortunately, when a full blown attack comes, it can last because if one is living in it (see above) every day, it seems never to want to go away. Then the meds that are taken to help, seem to do not much at all.

yvonneD

WOW, You sound so much like me. I too have been fighting like hell to try to beat this. It has taken a lot from me. I too would give anything to go back to work and be able to work out for 1 hour. The pain of this syndrome is debilitating. I have to really watch what I do. My muscles never un stiffen and the cramping starts up with just one wrong move. My legs are a real problem along with my stomach, rib area, arms and back, the pain is beyond tolerable. I dont really know the answers for helping with this. I am still trying to figure it out. Yvonne

LovinHerbs

My conclusion, after seeing docs for over fifteen years, is this. There is so much they don't know. it is easier for some of them to blame the patient, than to simply say, "I don't know."

I don't know how many times I've been told, after describing my symptoms. "You shouldn't be feeling like that."
HAA! I "shouldn't" be feeling this way? I whole-heartily agree! Problem is, I AM experiencing these symptoms, this limitation, this weakness, these muscle problems and this pain.

I've become direct and assertive over the years. I now know doctors are just human, sometimes kind and caring, sometimes not...sometimes knowledgeable and humble, sometimes ignorant and arrogant. The first few years I cried a lot, owning the shame some docs dumped on me. I'm not saying all doctors are like this. I have had a few who weren't. These days I will not work with any who are.

I was given the diagnosis of Fibromyalgia, Multiple Chemical Sensitivity and Chronic Fatigue Syndrome. I understand now, after years of experience, (I'm a slow learner), when I was naming these conditions, the doctors were hearing; exaggerating malingerer, and drug seeker.

I will never mention these things if I see a neurologist again. I have a hyperplastic thymus. My thoracic surgeon referred me to a neurologist, because he suspected Myasthenia Gravis. I told the neuro. about the previous diagnosis. I could see his demeanor change instantly the second I mentioned CFS. He said, "I see a lot of people like you and I can tell you right now, I probably can't help you." He spoke to the doc doing the EMG. She was curt and performed a quick, limited EMG, warming my muscles with hot packs when the results were abnormal, to reach a normal reading.

I hoped for years doctors could correctly diagnose what is stealing a normal life from me. I'm convinced my best healing is going to come from what I eat and drink, what supplements and herbs I take. Acupuncture, massage, and chiropractic therapies help. I'm helped also, by keeping my thoughts in line through prayer and Christian meditation. If I allow it, my thoughts will run frantic circles in my mind..."I have to find help, I can't live like this, I can't go on." Obsessive thoughts like these. I have to fight them every day, it's tiring. Acceptance is difficult.

I'm sorry you're going through this.

yvonneD

I agree that acceptance is very hard. I have been fighting for ten years now with pain. I am now finally just trying to accept that this is my life and the cfs anf fibromyalgia are not going away. I know it wont stop the pain but I am hopeful that Ill find peace. I am heading to Mayo clinic Rochester to there pain manegement program at the end of Jan. They inncorporate a lot of holistic ideas. I am hopeful.

rickthurbon

yvonne d
Can understand exactly how you feel its sometimes very hard to take.
There have been some very interesting things regarding these Syndromes coming out of the Mayo Rochhester in conjunction with Professor Angela Vincent from the John Radcliffe College in the UK.
Consider joining us at the Isaacs Syndrome CFS World Chat Board many members and lots to learn and discuss on the Forum we all
understand the pain you can be suffering. Its just not easy to manage.

Regards
Rick
Sydney Australia

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