please please please need input!!

[eham05]

Yes, I'm frantically begging, but i need input, I'm going crazy-
This main symptom i get occasionally is soooo bad right now, I'm in tears-

It feels like worms in my limb muscles and ribs on right side and the only thing that calms it is to squeeze, or stretch, or use the muscles. Well, I'm using them so much I'm EXHAUSTED!! Baclofen and valium are not helping as they usually do- any other remedies?? I see one of my docs tuesday, but till then I'm going mad!!

If i resist moving the affected area I start feeling overrun with mental fuzz and the wormy nerves HURT. Any input please??

[eham05]

Thank you,
I've had anemia-inducted RLS before, but this is not like that in sensation, plus it's in my arm, trunk, and soon set in to my neck- disturbingly it's all on my right side. My guess is some sort of sensory issue or misfire. Strange enough i found that caffeine relaxed it or maybe evened the feeling. Yes, many with RLS should avoid certain antihistamines, esp compazine for nausea- they can cause akathisia (tremors). I'll try you your tip suggestions, thanks! I'm also going to go for a massage and see if myo release helps any.

[twopack]

This sounds like RLS - restless leg (or limb) syndrome.  Ever hear of it eham?  It used to keep me up night after night but I rarely experience it these days.

One thing that is known to be associated with it is a low ferritin level - anything below 50 if I remember right.  Ferritin is measured with a simple blood test.  You can ask your doc to run one when you go.  In the mean time, start taking a quality iron supplement unless there's something in your history that dictates you shouldn't.  

Do you have MS?  There can be a lot of inflammation associated with MS and chronic inflammation can lead to a kind of chronic iron deficient anemia.  I take a supplement just to stay on the low side of normal.

Some 'seizure' drugs like gabapentin can help RLS.  Muscle relaxants aren't as helpful (the muscles aren't really in spasms) unless they let you sleep a little.  Usually they make you want to sleep more than ever even though the severe 'restlessness' makes sleep impossible.  I've been told that Benadryl (generic diphenhydramine) can actually make the sensations worse.

At home non-drug things that sometimes worked for me were:  short term intense heat (heating pad), sustained contraction of limbs, sitting/sleeping on an exercise ball, standing, distraction (TV, self-hypnosis).

Good luck to you.  RLS - or whatever yours is - is the pits!  I hope you find relief soon.

[eham05]

Thanks for reply,
This isn't an itch, more like a sensation nerves wiggling making it feel like worms in my muscles. It's a very deep sensation and actually is causing my brain to feel distracted. I've worn myself out moving the muscle areas so hubby is going to see if heavy pressure rubbing helps over ride the nerves. I feel like I've ran a marathon!!!

[PastorDan]

If not, do you have anything you can take besides (or with) Valium SAFELY that might suppress itching, & perhaps help you relax?  I haven't read enough on it, but I might first look at diphenhydramine.  Just a thought, but pkease research it before acting; i'm no doc.

[eham05]

Thank you!!! I'll try both things! Shew, haven't felt this desperate with a symptom in a long time...

[BittyBee]

I don't have anything like that. I get crazy amounts of itching though. I kinda smack it, not to hard though. I don't know if you have ever had a tatoo but it is what they tell you to do to it when it starts itching while it is healing. It kinda distracts your mind from it. I don't know if it will help, but if it's that bad it maybe worth a try.

good luck!

[Footsie3110]

I'm so sorry you have this plaguing you right now. The only thing I can think of that might help would be water... the sensation of the shower on the affected arts might help override the sensory input from the 'worms' and give you a bit of relief until you see your doc. Or perhaps some gentle massage/stroking might help to give your nerves something else to focus on.