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.