I think it is spreading
 

More and more I am feeling that it is spreading from my right foot and leg to my right shoulder. It started with the few zaps here and there and I could dismiss it as nothing.
Then it felt tender. My son leaned on my shoulder and it felt sore the same as my leg does when my 5 lb dog will sit and lean on it. It shouldn't be sore from just his head leaning, he does it all the time, but the moment his head touched my shoulder hurt. That triggered it in my head... uh oh.

I talked w/my PT and he said it could be that the CRPS is spreading but I need to really keep in my brain that nothing happened to my arm and keep moving it as much as I can.

Right now it comes and goes. I had a few moments of burning. Then nothing. It is my dominant arm and hand. And it feels weaker. That shouldn't be. But I tell myself NO.

I am on crutches still (though walking with them and weight bearing) and that arm/wrist hurts during the day. Right now my shoulder is burning a little. Hurts like I did a huge workout.

At least I'm already on an effective pain med regimen. Right? And I'm already in PT (though only approved for my foot). I have a gym set up in the garage and I'm going to start working my arms NOW. Besides the fact that using the crutches works them all day long.

This is so frustrating.

Becca,

I am so sorry to hear this. Whatever is happening getting your shoulder calmed down (while still using it) is important. Some doctors, mine included, will prescribe a short course of oral steroids to keep the system from going into overdrive. This is a good time to schedule a follow up and see if they have any tricks up their sleeve. You are at Stanford pain right?

Using crutches is a huge strain on the arms and shoulders as you know. Since you are bearing some weight might it possible to switch to a walker? Or to go to one crutch which would be used on your stronger side? Offloading and reducing strain may help.

I agree movement is good, just please be careful. Exercises that raise weight overhead cause strain in healthy shoulders. Maybe your PT can recommend some good, safe starter exercises to keep range of motion without flaring or risking injury. If you aren't getting in a pool, now could be a good time to start. If regular freestyle is uncomfortable you can get a buoyancy belt and gently swish around, thereby getting exercise and therapy for circulation and swelling at the same time.

I am sending healing vibes and hope you improve soon, :hug:

Just from overusing crutches - this can happen. That's how we think mine spread too. Just putting all the weight on the crutch can cause you to use those limbs to the extent they aren't supposed to be used (arms) and bear too much weight on them.

Becca I am so sorry that it may be spreading :-( My response would have been with same suggestions as Littlepaw's post ;-)

I see my Dr. on Tuesday. We have our team meeting to eval if I am ready for the intensive therapy program.

Hi Becca71,

Sorry you are going through this.

You can't be more than a year in at this point, so you've been dealing with this awful thing for a relatively "short" time. :( :)

A long time ago I read this study (and several more) indicating the role free radicals and the inflammatory process plays in RSD:

http://rsds.org/wp-content/uploads/2...ee-radical.pdf

Taking this to heart, I applied 50% DMSO to the site several times daily, and took 600mg of NAC (N-Acetyl Cysteine) 3x daily. The above study separates subjects into DMSO and NAC only, but I had nothing to lose at that point, so I didn't take any chances and went with both. My line of thinking was "DMSO for the site, NAC for the spread." I don't know what the side effects are, and I didn't experience any, but caveat emptor, of course. Just sharing my experience.

Beyond that, I changed a lot of other things: http://www.neurotalk.org/reflex-symp...ure-rsd-1.html It gets kinda weird in places, but feel free to go a la carte and pick any that resonate with you, and chuck the rest.

Also: There was a point several months in where I was still trying to work and meet deadlines from bed (couldn't walk yet) - I started getting the RSD "feeling" mirrored contralaterally in my left arm and shoulder. I also felt that "weaker" feeling in both arms and hands. This started just around the same time I started using DMSO/NAC. Really freaked out - went to the ER- went to an RSD pain mgt specialist at a teaching hospital --- they were all stumped and wanted to do a series of lumbar sympathetic nerve blocks and prescribe more medication prior to recommended PT/OT/counseling. (I elected not to proceed with the recommendations and continue with/expand my own PT/regimen). Ultimately it did NOT spread, but I'm convinced that the stress of work combined with propping myself up in bed on one side for a long period of time was what exacerbated the potential for it. Agree with everyone above on taking it easy on that shoulder of yours - it's undergoing a lot of stress and so is that immune system!

I can HEAR your motivation in your frustration - and you're ready to do and are doing anything and everything you possibly can to fight this... Light range of motion stuff is all good and 100% necessary (use it or lose it definitely applies); but I also found that applying that motivation to rest and stress reduction techniques was equally as important. You can do this!

PT taped the shoulder today because it was feeling really sore today, to see if that helped at all (no signs of allodyna at this point in it). I'm still not sure one way or the other. But it isn't going away. I think I need to hit vit. C. I read that vit. C after an injury reduced chances of getting CRPS.

I know I've read your thread, but I will have to go look through it again.

I'm frustrated by simple movements in my arm/shoulder now hurting.

Becca,

My pain management doctor told me that even if CRPS doesn't spread, the muscle guarding, gait change, etc can cause a chain reaction throughout the body. In my case from foot/ankle CRPS to my knee- hip bursitis-sore shoulder. He said he sees this pattern all the time.

hi becca. i am so sorry you rsd is spreading. mine started to spread little by little. i have had constant pain since being diagnosed with rsd in my initial rsd site. it has since spread to all my body. the pains in the rest of my body are different every day. i get zaps, tingling, pins and needles, burning. stabbing and electrical like pains. the pain is always there, but some days its worse then others. a few weeks ago it hurt to take a shower because the water stung my face. and though every day the pain may be different it is still always there and never goes away. but my pain meds and home exercise program from pt help manage my rsd pain a little better. it sounds like you are handling your rsd pain with a positive attitude and a successful pain management routine that is helping you. i am not a dr but think you are handling your rsd very bravely and you are an inspiration to me. i am a five and a half year rsd survivor. i hope someday a cure will be found. in the meantime having a support group here at NT helps me cope better with my rsd. i think that support helps us all cope better with whatever rsd brings to us each day. love and hugs to all.

Hey all,
Thanks for all the support! Doc says it could be just a neuropathy as all the nerves on that side are "****** off" so just don't panic and wait and see. Last few days the shoulder has been a lot better.