Spasms
 

Hey, just wondering if anyone else is dealing with mass spasms also right now - mine run from 1 spot to 3 or 4 in my right side, chest, back and arm - and if so, or in the past, what you do/did to calm these... Mine occur mainly when I am sitting or upright in any fashion, and can last hours. Takes a long time after laying down for them to stop. Any advice, suggestions?

Ugh...I have been dealing with these lately mostly in my back and they tend to last the whole day. The first time I wasn't sure and tried a bunch of different things but the best thing ended up being a hot bath followed by leaning on my electric heating pad all day. When I did this last time starting in the morning and using the heating pad all day it helped a lot. The spasms were still there but at least I felt like I could breathe without wanting to die...it really took the edge off. I also tried using a lidocaine patch, voltaren gel, stick on heating pad...none of those seemed to work at all. But the hot bath right away followed up with putting the electric heating pad behind my back while sitting seemed to at least take the edge off. Still was bad though and I was pretty useless all day.

ok, might see if landlords will let me use their tub... i get to use a stand-up shower which hurts my arm. 5 hours after i got up the spasms have temporarily subsided, but my arm and hand is both burning hot and freezing cold again. Good thing im not allowed to drive very often or far lol! will be calling my neurologist in about 6 hours about this too... see if he can prescribe any of that stuff as medically necessary so my lawyer can get me reimbursed.

Yeah...I cannot take showers anymore...they are FAR too painful. Hope the neurologist can get you something that helps.

Baclofen and Carbamazepine combo not working... Gods the meds we have tried over the past 25 months, wow. At least this neurologist has stuck with me, ONLY doctor that hasn't dropped me after 3 months or at knowing my diagnosis... Going to also check into long-term pool therapy, that water contact i can handle. Gets now to the point i don't even change my shirts often or remove jackets both for pain from contact and the needed warmth.

gave up on my tens units totally now, can't handle the various modes still. and they don't do squat for spasms in the places i can handle. my heat packs, i have to boil then wrap before i use, the weight gets to be unbearable.

Fun thing, we automatically reach for and try to protect our injured areas, i am getting to the point a lot where i can't even handle the lightest touches there. Sometimes i can, most times i can't. Is this also normal?

Unfortunately it is normal...sorry. For me I have had to learn to tolerate the pain of things touching my RSD areas (I can't very well walk around topless all the time...lol) and for me it is about the lesser of 2 evils. Yes...the clothes hurt but on the flip side the pain of even a slight breeze of cool air sets off a flare that is so bad I cannot stand it...EVERY time it happens. So I stay covered up on top and if I need to go outside I will put a scarf around my neck to keep that covered (I have RSD in my neck really bad too). If it's really cold out and I will be out for longer than just taking my dog out in the yard I will also put a Lidoderm patch on my neck with a disposable heating patch (the kind you can get at the pharmacy OTC) on top of that with the scarf over.

So much is about the lesser of two evils. But the disposable heating pads are nice because they are much lighter than the microwave kind and don't hurt to wear. Thermacare ones are pretty expensive but there are generic stick on versions that are much cheaper.

Just be careful of over protecting your RSD areas...the more you immobilize and protect the worse things get. There are desensitization therapies out there that can help with the sensitivity. For me...I just made myself get used to things by forcing myself to get used to the contact and slowly increased the amount of contact until I was tolerating fairly normal things. The pain is still there but I guess I have just learned to cope with it better...sort of created a new sense of "normal" so that I can still function despite that pain. This took about 6 months or so and is still something I work on every day...always trying to push that limit just a little further. It's slow progress but RSD is a use it or lose it sort of thing and the more we protect and immobilze the worse things get.

Have you tried (I'm sure you have but it doesn't hurt to ask) just putting the TENS on a constant setting as opposed to one of the different pulsing or burst modes? I can't handle the ones that pulse or burst but I find if I set it to a constant setting and then just turn it up if I start to get used to the setting...that works best for me. For some reason when it pulses or bursts at all that just aggravates the pain instead of helping. Crazy...you'd think it would help regardless of the setting type but I guess it does really make a difference.

I started the tens units (yes 2) and tried all the various settings about 6 months ago. For a while they helped, but the settings needed to be very high, which worried my therapists. Got to the point now that any setting makes me almost scream, and I cannot put them on my arm at all. Just my shoulder blade and sometimes lower neck area.

Can't help the immobilization of my arm, since the onset my arm has been bent in half and we cannot straighten it out. When we tried direct muscle massage last November, I developed another infection that required a total of 5 antibiotics (1 shot and 4 by mouth) over a 2 1/2 week period to remove the infection.

Have tried to get my arm used to the clothes and stuff but it's way too difficult. Like the past week I have not even removed my brace on my arm, it is also medically necessary. Covers my hand about 12 inch from finger knuckles to about 2 inches from elbow, plastic and removable, with a cloth underneath to protect the arm from scratches and stuff from brace. Nice thing, it also restricts the swelling, making it more even from hand to upper elbow. When I have to take it off, it takes a long time to get it back on especially due to the increased swelling in my lower arm.

My former therapists had me working under the "no pain, no gain" theory, and we pushed me as hard as I could stand but I have since learned that process is actually detrimental. Hindsight... Ahh well, better to learn now than never :)

Yeah...no pain, no gain isn't quite how it works with RSD. There's pain alright but it has to be balance properly with rest and should never be pushed beyond what you, the patient, feels is acceptable. So sorry to hear about the brace and everything...yet another thing for me to be thankful for not having to deal with. It seems like such a mess...but it is what it is. Hopefully something will give you the relief you need to eventually get it all under control. New treatments are coming out all the time so I pray you find one that works for you.

Have you read the tDCS thread that ballerina has going about her success with it? It's very inspiring and might be worth discussing with your neurologist...epecially given your lack of relief from the other treatments. Some fo the improvements ballerina has experienced are nothing short of a miracle. I know it doesn't work for everyone (darn this RSD and its complexity) but since it has almost no side effects, is not at all invasive, and it doesn't need to be placed ON the RSD areas (which is HUGE for many people who cannot tolerate anything touching the RSD areas). I'm hoping that I can start doing this treatment soon and that it will only serve to help me get that much closer to having a "normal" life despite the RSD.

Neurologist told me he doesn't deal with pain, just the neurological side. Which means the spasms. But he has stuck with me for about a year now. Still calling doctors offices to get into a pain doctor even if I have to pay up front. Have read the tDCS thread here and elsewhere, but the costs are beyond my reach right now. And I still have hoops to go through first, which is the pain doctor and the psychologist and then more therapy and then we see what progress if any is made. Really wanting to try first the delayed release pain meds with therapy and see how that goes. Would love to do the implant with continuous medication release for pain, if there is an alternative to morphine. I am allergic to it.

Just a thought about the TENS unit. When the physical therapist first gave it to me I tried it on every setting sand it only increased my pain-big time! One time it reduced me to tears, sweats, rapid breathing, etc. I then called the company and spoke with a company physical therapist who mailed me a protocol for CRPS of the upper limb, (which ended up being useless) and also walked me through reprograming one of the settings. Before I hung up the phone I was getting relief.

Hope this is helpful.

how did it get reprogrammed? lower, higer, different type of current?would love to know, today is pure he77 on me, this affecting my left arm and right shoulder as well as right arm, and i cant even lay down to relax it's so bad.

I suggest you call the manufacturer and ask to speak to a staff PT. Ask if their particular unit has a CRPS protocol. Also ask how the unit might be reprogrammed to be beneficial.

Hope this helps!