need help any advice would be greatly appreciated.

[trentw2000]

Hey guys,
Hope everyone is well. I have reached my twelve months of troubling symptoms and still no answer to a diagnoses, been cleared of MS, ALS so thought maybe i would see if any of these symptoms appear in fibromyalgia..i am a 28 year old male...

symptoms:

I have lots of pain signalling all over my body constant pain in lower back, collarbones and shoulders ...a lot of joint pain

1. high quantity of twitches everywhere in my body, you name it, i have twitched (still current)
2. postural tremors felt and seen as well as tremors if holding weight etc on any limb, body part (still current)
3. myclonic sleep jerks and now some electric shock type jerks whilst awake that move my body and a limb (still current)
4. GERD, heartburn, scalloped tongue, slurring of some words my th's sometimes turn to f's, tongue biting on occasion whilst eating (still current)
5. extreme muscle stiffness throughout whole body, feels difficult to hold my posture most days (still current)
6. extreme muscle pain that is sporadic and all over body periodically like sharp pains or deep pain (still current)
7. tingles and ticklish itchiness that drives my crazy through out my whole body (still current)
8. a few cramps that kill or a feeling of a cramp like deep pain through out body parts (still current)
9. extreme clicking of joints with pain involved(still current)

medical history for these symptoms
1. 8 neuro visits:
2. clinical exams always fine and passed, no clinical weakness seen even tho i feel weak and am tremoring and less stable
2. 5 emgs in the one year, first emg was suggestive of mild chronic denervation, the other 4 were completely normal and clean
3. endocronologist, blood work and hormones all fine
4. mri of the brain was clear
5. spinal tap discovered cranial hypertension was raised.

note: Last neuro visit was 3 months ago and i got another all clear of anything sinister or nasty.

The things really worrying me are finger twitches that move my whole finger, they are very persistent and happen daily and a lot, does anyone have these that frequent?
the tremors are really bad and my whole body shakes especially my mid section which feels weaker and shakes like crazy just trying to sit up in bed unassisted, or my legs if i just hold them out right will shake and tremor violently and visibly anyone here get that? also the cramp like pains that are very painful and pain in general in muscles unexplained and the tightness/stiffness anyone get that? one last thing i have a lot of rib pain, they are sore just to tough, hurt when i cough or sneeze or breath in a lot coupled with extreme shoulder pain... could it be fibromyalgia? i am male tho. Judging by my medical history can i rule out ALS for sure? even tho i have never had my back, tongue or chest, stomach emg'd, only every limb? i am only 28 years old, any advice and support would be greatly appreciated.



Trent.

 

[Corvid]

Gosh, Trent, it sounds like you're going through a whole mountain of crap. I'm not an expert, so I'm not even going to try to diagnose your symptoms. I know that fibro can manifest differently in each person--some people have symptoms a, b, and c, but not x, while others have x, y, and z but not b, etc.

For myself, I get the myoclonic sleep jerks, not just as I'm falling asleep but any time I am deeply relaxed or when my meds are wearing off and it's not time yet for my next dose. I also have noticed more twitches than I got before fibro, but not at all to the extreme that you're describing. Mine are just garden variety muscle twitches like the kind you get in your eyelid, except I get them in other places (legs, arms, hands). When I get them in my abdomen, it feels just like when I was pregnant and the baby was kicking up a storm.

I get muscle cramps and spasms wherever there's a muscle (legs, ribs, arms, abs, toes, fingers, back), and the cramps get worse the more I use the muscle. I'll also see an increase in cramps when I'm even slightly dehydrated or if I'm late taking my meds.

I don't get postural tremors, though I frequently have "orthostatic intolerance" (can't bear to stand or sit up, must lie down immediately). I don't currently have the electric shock sensation, but I had those excruciatingly when I was weaning off an SSRI med I was taking. It was diagnosed as "SSRI Withdrawal Syndrome" and was torture. Concurrent with the shocks, I'd lose my sight and hearing for a split second. It was like living in a strobe light. It took nearly 6 months for the symptoms to go away. I don't know whether it's a fibro symptom, but you sure have my sympathy!

Have the docs diagnosed you with anything, or are they still just ruling out everything else?

 

[1sweed]

Trent,
I am guessing that since you have seen a neuro doctor that Parkinson's Disease, has been ruled out as well. Often times in the begining stages of a disease symptoms are the same as many other diseases. Thus the only clues the doctors have are the abnormal test results. I am sure they are keeping a close eye on you should more symptoms develop. While fibro could be in the mix of things it may only be a part, but not all of your problems.

You mentioned that your chrst and rib area hurts. It might be a condition called "costochondaitis" which is inflamation of the muscles linings between your ribs. Try using a heating pad on low setting and hugging it to your chest. Be sure to wear a tee shirt underneath the heating pad. Another trick is to warm a blanket or towel in the dryer and hold it close to the painful areas. By keeping areas of your body warmer than usual you can ward of cramps.

When in bed wear socks. Put a blanket or throw over your lower legs and feet. It might be a tad warm, but it helps stop painful cramps in the night. Be sure to drink lots of water and juice to avoid dehydration that is easier to get in the colder winter months, and drinking more fluids in the summer is important as well.

You mentioned getting trembling and shaking. Both of those can be worse when you are stressed out. Anxiety can rule the day when your in pain and fearing you have some terrible disease. I have been there waking up shaking so bad my knees were knocking together. Not to say more is not involved, but stress and anxiety, and depression from major life changes can make life a mess.

Do you have a friend or pastor, or even a counseler you could talk with that would be understanding and yet nonjudgemental in helping you deal with this undiagnosised illness?

Also try to find fun ways to relax that take your mind off of your pain. We here often talk about watching funny movies or reading really good books, soaking in a tub of warm water with epson salts in the water (eases sore muscles), working puzzles, taking nature walks. talking with friends, starting a new hobby.

I hope our forum helps you in finding some new coping skills and ways to make your life less painful and more fulfilling. Ask more questions and answer other peoples questions. This way you gain knowledge and make lots of new friends as well.
Welcome to the forum. I am glad you found us!