[ShaggyChic_1201]

For those with RSD/CRPS in your hand/arm and are able to get around, what are your tips and tricks to not screaming in pain everytime you have to touch something?

I've sorta figured out how to keep my forearm safer. Since air/clothes touching my skin is so painful, I buy footless tights (size s/m), cut of the legs, make a finger hole and wear them. I use the self-adhering stuff they use to wrap your arm when you have blood drawn to keep it from falling down. It's a balancing act - can't make it too tight b/c that sets off waves of pain, but too loose means I have to pull it up and that defeats the purspose.

My bigger problems are I can't bear to let my arm hang down, but can't put it in a pocket either b/c my hand hurts so much. I use a homemade sling (larger so I don't have to keep shifting my arm, and lined in supersoft fleece) if I'll be standing or walking for more then 15-20 minutes. This in turn causes cramps along my back and ribcage. This pain seems to intensify my arm pain, but w/o the sling my arm is prone to dislocating and that is a whole pandora's box of worms and pain, so it's the lesser of two evils.

I haven't figured out what to do about my fingers tho. A glove seems too affected and Michael Jackson-ish and it would get in the way of doing things, which would ruin the fantasy that I can still function in the world.

I'd love to hear other ideas!

Air hugs to all

[fbodgrl]

I had horrible sensitivity to touch in my hand when my RSD started a few years ago. It now is much milder except for cold air.

In the beginning I forced myself to touch things even if it caused horrible pain. I started by petting my cats and dog and washing and drying my hand. I live alone so I was basically forced to have to use the hand in certain situations even if it was excruciatingly painful. My hand and arm have major atrophy and really can't do much except to support things, etc.

I also was in therapy because my RSD was a result of 3 surgeries. So I also had to do exercises, get massages and ultrasound treatment no matter how bad it hurt. I'm thankful for the therapy. Although I have little use of the arm and hand. I would have none if I didn't force myself through the pain.

[catra121]

I will admit...I do the glove thing...even though it looks ridiculous especially in the summer when it's 100 degrees outside. It keeps me functioning...allows me to get things out of the fridge/freezer and allows me to do a lot of things at work that I wouldn't be able to do otherwise. I have to be very careful touching metal (since it's prone to get cold either in the winter because it's cold out or in the summer because of the A/C) and every door handle is metal...so gloves are a must for that. I buy packs and packs of those magic gloves in the winter because they stretch easily to fit my hands and are cheap.

I had to do a lot of desensitization with my hands to sort of normalize the pain sensations and make it easier to handle. My physical therapist also had me do a lot of puzzles and encouraged me to work on my cross stitch because she said that deliberate movements with my hands that required that sort of precision were good to help me get the function back.

I also have to know my limits though and avoid the things that really put me into flares...especially when it comes to holding anything for any period of time. My fingers claw up in a flare and it is SO painful to try and get them straightened back out.

[LIT LOVE]

Immobilizing your hand/arm is a bad, bad idea. This could cause spread and increase your RSD symptoms as well.

If you're hypersensitive to changes in your environment, it's best to limit your exposure to places you can't control. If going out in public sets your pain off and it takes you days to get back to baseline, then try to prioritize what is worth going out for.

It's hard to give tips or tricks when we all react so differently to different stimuli.

Do vibrations bother you? I always use a pillow in the car when I go more than about 5 miles from home. I chose a car that has great suspension.

If I have to wear long sleeves due to the cold, I usually wear a Lidocaine patch.

If an environment is too loud, I'll leave. If I'm forced to stay, I'll find the quietest spot possible or use headphones with calming music. I rarely go out to eat, but when I do I avoid places with televisions, because the flashing lights set me off. And--I choose time periods that have low activity. Lunch after 2pm, Dinner before 5pm. Etc.

I do most of my shopping online now.

I hire people or have family to help me do things I'm no longer able to...

I use my hand and arm for short periods several times a day to maintain my range of motion and muscle. It's even in "normal" ranges unless I flare. I often cook in stages for example.

[ShaggyChic_1201]

Too emotional right now had to go on leave from work, but will respond ASAP.

Shaggy the sad

[Lottie]

I have to agree with Litlove - immobilizing is bad and will lead to declining function. Find ways to increase comfort and keep moving the limb. Try immersing the arm in a tub of warm water and do range of motion exercise of the fingers and wrists under water. Mayybe wear a soft cotton glove . Have you done physical therapy?
Wishing you wellness ~Lottie

[fbodgrl]

Originally Posted by ShaggyChic_1201

Too emotional right now had to go on leave from work, but will respond ASAP.

Shaggy the sad

Sorry! I haven't been able to work for over 3 years

[ShaggyChic_1201]

I am seeing a PM doc, but the ONLY thing he will do is SCS (leads). Won't write for PT, massage, OT or anything. I've never been addicted to anything and yet he will only write script for 100mg tramadol prn (NTE 8). I dont even bother to take it since it does nothing.

Your comments on the sling are accurate. The problem is my shoulder is so unstable that walking, sneezing, reaching, or random muscle contractions cause it to partially dislocate. Each time it occurs, the brachial plexus gets jarred and sends out a cascade of pain signals around my clavicle, shoulder and armpit. The CRPS seems to like the company, so it flares too.

I can't have surgery to fix my shoulder til CRPS is under control. Can't seem to get CRPS under control til my shoulder is fixed.

What's a girl to do?

[LIT LOVE]

Maybe it's time to change docs. There are countless docs out there that claim RSD/CRPS experience that are pretty darn clueless.

If tramadol doesn't work there are several other meds that are in the same family that you might do better with. You also need to try some of these meds for a month before you'll notice a difference and even then the dosage might need to be increased slowly to find the optimal results.

I would ask about low dose naltrexone since it supposedly has the pain reduction benefits of an opiate with none of the side effects.

I spent a few years guarding my arm and it took a lot of work in physical therapy and with a pain psychologist to unlearn that bad habit. I had major atrophy in my hand/wrist at the time and I caused permanent damage to my elbow, shoulder, neck and back that are still with me 12 years later.

The RIGHT physical therapist might be of some help to avoid surgery. Warm water pt might also be a good choice.

[fbodgrl]

I agree... time for a new doctor!

There is no way to get it under control if he isn't doing anything to make that happen. There are many medications both narcotic and other types and therapy that can be tried.