[BayouPatti]

I have been in treatment for at least 4 months for CRPS. It developed after I'd had shoulder and wrist surgery. I was finally diagnosed by a rheumatologist. I'd became so frustrated with the orthopedic that did the surgeries, that I went to my primary Doctor who ordered x-rays, comparing my hands. The rheumatologist referred me to a pain management doctor, after seeing one which was very questionable to me concerning his attitude. The new pain management doctor did 7 ganglion blocks which did help to a point. Before them, anything that brushed against my finger tips caused shooting pains. That part is not as bad, plus a pinched nerve in my elbow is better. I still have throbbing pain in my palm, along with pain along the side of my hand on the opposite of the thumb. Also, my middle finger feels like it has been broke and will not bend as far as the rest of my fingers.I did have weeks and weeks of excruciating therapy. My last session the therapist told me I'd never be able to make a fist with the affected hand again. The therapy loosened my fingers some, but within 30-40 minutes later, they were as tight as they were before...stiff and painful. I also get muscle spasms in my fore arm and sometimes upper arm, along with some sharp pains along my shoulder. Between my neck and shoulder there is like a pressure and I'm wondering if the ganglion blocks has caused that. Presently I take Neurotin, Percocet & Cymbalta along with other meds for other health conditions. My Pain Management Doctor has mentioned a nerve stimulator which scares me. I have had to have so many surgeries and hospitalizations in the last 6 years...this CRPS is so hard to deal with. I have withdrawn from the world and the home I had such pride in, well I am near the end of my rope. It seems I'll never catch up. The simple tasks create more pain which just adds more to the depression I've battled for even more years. Any helpful suggestions?

[Chemar]

Hi BayouPatti
here is your post, now on your own thread as it was getting lost on that other thread.

[catra121]

I am so sorry to hear all that you have been going through.

Can I ask if there is anything at all that you have tried that makes your hands/arms feel any better? I have RSD in my hands/arms (among other areas) and here are some of the things that work for me. Mind you...they don't help a LOT with the pain but for me I have found that the best things are often little things that can add up to make it bearable.

1. Hot baths with Epsom salts. This helps all my RSD areas...a nice long soak. When I wasn't working I was taking 2 baths a day for a while and that really did help a lot.

2. Ultrasound heat therapy unit. I got one of these on amazon.com for about $40 and it has been very helpful. I use it after my baths on my RSD areas and it seems to extend the relief that I get from the baths. If I am having a bad flare in a particular area then I may focus more on that area than others. Did your physical therapist ever use one? That's where I had my first encounter with such a machine and what made me think of getting my own unit.

3. TENS unit. This doesn't help so much with my hands...but when parts of my arm flare up the TENS unit can help. I surround the area with the electrodes and it does make a big impact on the pain. In fact...I have found my TENS unit is one of the few things that actually makes a significant impact on the PAIN on it's own. Doesn't work for everyone but it's worth a shot. If your physical therapist has a stim unit...I would ask to see if you could try it after a session. When I was in outpatient physical therapy I was able to get stim with heat after my sessions and it helped quite a bit with the pain. My own unit is portable and I will wear it throughout the day, turning it on for thirty minutes to an hour depending on what I am doing and the pain levels. I run the wires under my clothing.

4. Heating pads. I have several of these. I like the one use ones like Thermacare or the generic versions you can buy at the pharmacy. They are good to wrap around the areas that are flaring up. For my hands...sometimes I will use those hand warmers they sell in the winter or in cold areas.

5. I wear gloves a lot. It does hurt to wear them...but they protect my hands from the biggest triggers like cold and air movements. I have found that a big key for me is to try my best to avoid the things that make my pain the worst. I bought some (and don't laugh)Tommi Copper gloves at one point and I really liked them because they were thin and light weight but kept my hands warm. I did wear them out and haven't bought another pain...but will for the summer. In the winter I just wear my winter gloves all the time. Look like a bit of a freak but whatever works, right?

6. Physical therapy. I know you have been doing the therapy and even on your own I would try to do as much as possible. Movement is key. Just sitting and flexing my hands was a big thing at the start. When my hands freeze up or claw up...this is usually what I do to get them back and functioning. Hurts like all get out but eventually the pain eases up and I get the movement back. Physical therapy with RSD can be a VERY long process and it can take a daily commitment to doing the exercises and not just doing them at therapy. It's hard and painful...but it can help a lot.

7. Relearn to do things so that you are limiting your exposure to things that make you flare. I can't do things the way I used to do them before. I can't hold things for any length of time because the pain gets bad and my hands freeze up. That doesn't mean I can't DO things...I just have to do them differently. Little adjustments to make things work for me.

8. Lidoderm patches and lidocaine cream. The patches on my arms and other RSD areas...the cream on my hands and areas where it's too hard to keep a patch. Again...this helps a little and not a lot...but I'll take it. I also tried Voltaren gel which helped with the inflammation in my hands a little in the beginning when it was really bad. I prefer the lidocaine cream though.

And...yeah...I think that's pretty much it for things I use to help my hands and arms. I also have RSD in my upper body between my waist and neck and in my left ankle. All of my upper body RSD was spread after a sympathetic block that was meant to help my ankle. There are many who have gotten an SCS and have found it to help their pain. I personally wouldn't get one because the long term results have consistently been reported as not good and I also don't want to do anything invasive like that if I experienced spread after something as "simple" as a block. But that is only my personal opinion. You should research SCS yourself and then weigh the risks and benefits. There are many who would not trade their SCS for anything as it has given them their lives back. Another option to look into would be ketamine treatments. Ask lots of questions on here and there are many who can share their experiences and opinions about the various options out there for treatment.

Just remember that we are all different. What works for me may not work for you. It's important to know yourself and what your triggers are. If you're not sure...keep a journal and see what sorts of things typically increase your pain and what things help. It's amazing sometimes what patterns we can see in something like a journal that we review after a week or two that we cannot see on a day to day basis.

Good luck and I hope you are able to find some relief soon.