Discussions By Condition: Muscle conditions

Am I the only one who has these problems?

Posted In: Muscle conditions 4 Replies
  • Posted By: echocrush
  • February 23, 2007
  • 03:46 AM

I have been tentatively diagnosed as having fibromyalgia/chronic fatigue. Still not sure about it though, and now my cousin is showing very similar symptoms so we aren't sure what to think about that.

Last year my symptoms were severe enough to leave me bedridden, The symptoms seemed to come on almost like a seizure, I would feel my tremors worsen, get dizzy, and confused, I was unable to articulate thoughts, and could not find words or their meanings that I've known since second grade. I would have to point to pictures on menus because I would read the words but not be able to comprehend them. Even a slight chill would freeze my body to the core. I actually shiver until my teeth chatter, heat seems to aggravate my nausea to the point that I will just be walking down the street and vomit with no warning.

The list is long but at the time muscle tremors, vertigo, nausea, chronic moving pain through my joints and muscles, and absence of strangth in my limbs leaving me unable to walk prompted me to seek medical attention. At first the doctor suspected MS, and at the time she said it was clearly a neurological disorder but an MRI showed no lesions. The doctor told me at that time that we were "going to call it fibromyalgia/chronic fatigue"

Many of my symptoms date back to childhood, and the age of sixteen seems to be the onset of the majority of symptoms. They just didn't all come together and attack at once until last year.
I have good days and bad, my symptoms flared after I was placed under an extreme amount of stress, and to this day I can see an almost instant increase in symptoms as my stress levels rise. I have three persistant amd unexplained symptoms that are driving my crazy.

Anyways I have some strange symptoms that I would like to see if anyone else has. Last year when I was at my worst I developed an annoying habit of clenching my fist, I say it was a habit but I was not in control of it... and I didn't really have control over it. I could open my hand, lay it flat, and as soon as I forgot about it it would curl itself up again. I would not even be aware of it until my nails started cutting into my palm.

It seemed to be at it's worst when my tremors were bad, but it finally passed and rarely happens anymore. A few weeks ago I started in with the tremors again, my hand is behaving fairly well, but now it is my jaw muscles. Same scenario, I will become aware of my jaw being sore, and realize that my teeth are clenched so tight it is causing pain. I will force it to relax (lol) and before I know it it is tightly clenched again. It seems to get worse at night, but the jaw pain is now present throughout the day.

So there is this random muscle clenching thing going on...

Second it my ribs, it you place your hands under your breasts just above the ribline, fingers touching... that's where the pain seems to rest. Only it's not so much of a pain, as it feels very swollen. It is so tender that laying down puts pressure on it and I have to prop pillows all around myself to alleviate the pressure. It gets worse when I sit upright for long periods, but seems to feel better if I lay down and keep my weight off of my rib cage totally.

And third... this is a strange one, so strange I'm not even sure how to describe it. I remember having it even as young as kindergarten, but it was very rare, only happening a few times a year or less so I didn't think much about it.

It only happens when I am at rest or relaxing, usually just before I fall asleep. right under my rib cage there is a distinct tightening of my muscles that I call a contraction, for lack of a better term. It is a painful and very strong feeling that tightens and releases in a very rythmic pattern. I can feel it rising, tightening, and subsiding very clearly. Again it is involuntary, but I can make it stop by focusing on it and not letting it contract when I feel it rising.

Like I said I can remember having this feeling as young as kindergarten, and I always thought it was some normal girl thing. It happened so rarely that I really didn't give it much thought. Now it is becoming more frequent, almost nightly and sometimes even happens when riding in the car or just sitting still.

The contractions are becoming stronger, and I have a harder time stopping them now. I have also had restless legs most of my life, and it has gotten worse as my symptoms progressed as well. Not nightly, but very, very frequent now. I have noticed that the feelings in my legs and my abdomen are very similar. In that I can feel a distinct rising and falling of the cycle. The only thing that alleviates the feeling in my legs is actually moving them, while in my abdomen it is focusing on the spasm and making it stop.

I've seen half a dozen doctors for my strange illness, it seems like a new symptoms araises monthly and I never have the same symptoms two days in a row. It is very frustrating to say the least.
I have brought all of these concerns up to the doctors and they wave them off. One doctor suggested that I wear a better bra being a big chested girl, and lose weight. Most of them don't even seem to hear me when I mention them.

The only medication I am on is Cymbalta, and all symptoms precede the medication. Does anyone else have any knowledge of these symptoms? Does anyone know what this is called, or what could be causing it. I'm getting desperate.

I am on Muscle relaxers and ultram as needed, though I really don't like taking them as they make me sleepy. I am also on provigil from time to time, but as above, I only take it when i don't have a choice.

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4 Replies:

  • My guess would be, undx'd Lyme disease and its co infections. They have tied it to Ms, Fibro and much more. They thought I first had ms, then it was fibro. I did the antidepressants for close to 7 yrs and they didn't do much. Only 6 months ago, we learned it was Lyme. Some people never get the bulls' eye rash, but have other skin rashes, that dr's will just dismiss.There is no cure, but antibiotic treatment does help . If you had it a long time, it will deplete you body of minerals and mess with everything, like thyroid, adrenals. I get couch ridden, for a few weeks at a time. Magnasium seems to help with some of the pain...All the test results "are normal", but the docs don't routinely test for Lyme...Part of the dx is clinical too and you sure sound like it to me..Stress can cause the lyme flare ups...If you have had it for many yrs, I suspect a heavy bacterial load...Go to www.lymenet.org theres lots of info and help there. Good luck, sweetie.
    Anonymous 42789 Replies
    • February 24, 2007
    • 00:22 PM
    • 0
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  • I have had fibromyagia for the past 15 years before it was even really known what it was. I was lucky enough to get a doctor at the time that was teaching and lectureing about it. It all sounds like fibro. except the confused, I was unable to articulate thoughts, and could not find words or their meanings. I would have to point to pictures on menus because I would read the words but not be able to comprehend them.everything else is exactly fibro. it is very painful to touch areas. Insomnia is a problem, muscle, joint pain,bowel problems, fatigue and more. Sometimes unable to move out of bed from the pain. But there is a medication that helps it is a antidepressant called amitriptyline and in small doses of to start off 10 up to 100 mgs. Ity works wonders along with soma and ultram. I had at times gotten to the point of so much pain i was on morphine but i don't like to take the pain meds because of the fog i was always in. the only problem with all of the meds are they cause weight gain but especially amitriptyline but sometimes i have to take it because of the pain.
    Anonymous 42789 Replies
    • February 24, 2007
    • 11:03 PM
    • 0
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  • if you have not checked with a rheumatologist yet do so as a fibromyalgia chronic fatigue sufferer some of your symptoms sound familiar and some do not but all fibromites suffer differently find a rhemy that is familiar with all of the different trigger points and you should have some luckI have been tentatively diagnosed as having fibromyalgia/chronic fatigue. Still not sure about it though, and now my cousin is showing very similar symptoms so we aren't sure what to think about that. Last year my symptoms were severe enough to leave me bedridden, The symptoms seemed to come on almost like a seizure, I would feel my tremors worsen, get dizzy, and confused, I was unable to articulate thoughts, and could not find words or their meanings that I've known since second grade. I would have to point to pictures on menus because I would read the words but not be able to comprehend them. Even a slight chill would freeze my body to the core. I actually shiver until my teeth chatter, heat seems to aggravate my nausea to the point that I will just be walking down the street and vomit with no warning. The list is long but at the time muscle tremors, vertigo, nausea, chronic moving pain through my joints and muscles, and absence of strangth in my limbs leaving me unable to walk prompted me to seek medical attention. At first the doctor suspected MS, and at the time she said it was clearly a neurological disorder but an MRI showed no lesions. The doctor told me at that time that we were "going to call it fibromyalgia/chronic fatigue" Many of my symptoms date back to childhood, and the age of sixteen seems to be the onset of the majority of symptoms. They just didn't all come together and attack at once until last year.I have good days and bad, my symptoms flared after I was placed under an extreme amount of stress, and to this day I can see an almost instant increase in symptoms as my stress levels rise. I have three persistant amd unexplained symptoms that are driving my crazy. Anyways I have some strange symptoms that I would like to see if anyone else has. Last year when I was at my worst I developed an annoying habit of clenching my fist, I say it was a habit but I was not in control of it... and I didn't really have control over it. I could open my hand, lay it flat, and as soon as I forgot about it it would curl itself up again. I would not even be aware of it until my nails started cutting into my palm. It seemed to be at it's worst when my tremors were bad, but it finally passed and rarely happens anymore. A few weeks ago I started in with the tremors again, my hand is behaving fairly well, but now it is my jaw muscles. Same scenario, I will become aware of my jaw being sore, and realize that my teeth are clenched so tight it is causing pain. I will force it to relax (lol) and before I know it it is tightly clenched again. It seems to get worse at night, but the jaw pain is now present throughout the day. So there is this random muscle clenching thing going on... Second it my ribs, it you place your hands under your breasts just above the ribline, fingers touching... that's where the pain seems to rest. Only it's not so much of a pain, as it feels very swollen. It is so tender that laying down puts pressure on it and I have to prop pillows all around myself to alleviate the pressure. It gets worse when I sit upright for long periods, but seems to feel better if I lay down and keep my weight off of my rib cage totally. And third... this is a strange one, so strange I'm not even sure how to describe it. I remember having it even as young as kindergarten, but it was very rare, only happening a few times a year or less so I didn't think much about it. It only happens when I am at rest or relaxing, usually just before I fall asleep. right under my rib cage there is a distinct tightening of my muscles that I call a contraction, for lack of a better term. It is a painful and very strong feeling that tightens and releases in a very rythmic pattern. I can feel it rising, tightening, and subsiding very clearly. Again it is involuntary, but I can make it stop by focusing on it and not letting it contract when I feel it rising. Like I said I can remember having this feeling as young as kindergarten, and I always thought it was some normal girl thing. It happened so rarely that I really didn't give it much thought. Now it is becoming more frequent, almost nightly and sometimes even happens when riding in the car or just sitting still. The contractions are becoming stronger, and I have a harder time stopping them now. I have also had restless legs most of my life, and it has gotten worse as my symptoms progressed as well. Not nightly, but very, very frequent now. I have noticed that the feelings in my legs and my abdomen are very similar. In that I can feel a distinct rising and falling of the cycle. The only thing that alleviates the feeling in my legs is actually moving them, while in my abdomen it is focusing on the spasm and making it stop. I've seen half a dozen doctors for my strange illness, it seems like a new symptoms araises monthly and I never have the same symptoms two days in a row. It is very frustrating to say the least. I have brought all of these concerns up to the doctors and they wave them off. One doctor suggested that I wear a better bra being a big chested girl, and lose weight. Most of them don't even seem to hear me when I mention them. The only medication I am on is Cymbalta, and all symptoms precede the medication. Does anyone else have any knowledge of these symptoms? Does anyone know what this is called, or what could be causing it. I'm getting desperate. I am on Muscle relaxers and ultram as needed, though I really don't like taking them as they make me sleepy. I am also on provigil from time to time, but as above, I only take it when i don't have a choice.
    Anonymous 42789 Replies
    • February 25, 2007
    • 08:50 PM
    • 0
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  • Have the doctors checked you for Dystonia? A lot of your symptoms cover myoclonus dystonia that starts in childhood. It is a rare type and not often diagnosed.
    Anonymous 42789 Replies
    • February 26, 2007
    • 06:18 PM
    • 0
    Flag this Response
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