I had shoulder surgery back in november which caused me to now have RSD. It seemed to have spread into my other shoulder, neck area, as my non injured shoulder now imitates my injured one-which I know I haven't injured it. My neck and shoulder area just feel so heavy and a lot of times I feel like my bones are being smashed along with the random aching and electricital shocks-all are less often because of the neurotin but still extremely painful.

Over the last couple of weeks I have had random pains in my feet that I have been trying to ignore. Now they have gotten more often, always when the evening comes and throughout the night. When I wake in the morning I have to walk around for a while and then the pain dissipates and has been disappearing until the evening comes again. The pain makes it very hard to walk. Sometimes it mimicks the smashing sensation when I'm trying to fall asleep and it just plain hurts to walk.

It has progressed the last couple days to be consistent every night instead of random nights of discomfort. I am sitting here waiting to try and see a specialist to finally try ketamine infusions which now may be my only hope.

Do the symptoms I'm describing sound like it is spreading and if so is there anything anyone can recommend to stop it?? I have been trying to keep up on the treadmill workout starting the last two months to keep myself healthy and somewhat active without causing issues with my upper body but now I am concerned it may be in my feet and then should I not workout anymore? I wish someone could say no don't do it it will make it spread or yes do it it will stop it from spreading, etc.

I'm just really freaking out

Simple answer don't do it. Although my original RSD was in my hand I could not understand why everytime my heels hit the grund a wave of pain went through my hand. The explanaion I was given is tht this scrambles the pain centre of the brain so that signals even pleasurable ones from any part of the body can be tred into pain ones and transmitted to the rsd area.
Any exercise should be gentle and you stop at the first sign of rsing pain.
The slightest trauma can cause it to spread and it does in 77% of us and certanly sounds as if it is in you

I would echo what Kevin said. Unfortunately, it does sound like it’s spreading. I believe there is a super fine line between doing and doing too much. Of course you want to try and keep moving as much as you can, but when it becomes painful, physical therapist will tell you to stop. They will tell you in PT if it hurts, don’t do it. I learned this in a recent six week round of PT, and that there are exercises that you can do, but they’re probably not the ones you’ve done most of your life. For me the exercises involved colored bands that were to be used as resistance. I did WALK on a treadmill, but not at any crazy pace since mine began and is worse in my legs/feet. I actually needed something that resembled flight gear to suspend me over the treadmill until they were sure I could do it and not fall, and frankly I wasn’t altogether sure of what my body could do either.

Anyway, I’m so sorry to hear that perhaps spread will be an issue for you. Is there anything to stop it? Um, I do not know of anything, and yet I have not ever tried Ketamine either so not sure if that will help or not. Fmicheal, and others who posts on this forum, have tried or are trying something called Transcranial Direct Current Stimulation the link is here, but I must warn you it is a post (discussion) with many pages, but perhaps it might help? I’m honestly not sure if t.D.C.S. helps with reducing spread or not.

I truly believe that everyone who has this disease experiences it with slight differences and variations, and yet there are a common threads so to speak.

I hope things will settle down for you at night soon. I am more symptomatic at night than any other time of the day. If I get symptoms right out of the gate first thing in the morning, yeah, it will make for a hellashish night for sure.

Thanks for your replies. Just a quick clarification-I haven't had the pain while on the treadmill and if I did I would stop for sure. It's the one thing I have still web able to do to release my stress and keep myself in somewhat a decent shape since the meds and the RSD want me to not be lol.

I was really hoping to not hear that it may be spreading-I'm really in denial of all of this whole thing. In the past I would try and I off my nerve meds hoping that this time I wouldn't have any more symptoms and that I was one of their who's RSD "ran it's course". I even still look online to find different nerve disorders hoping to find something else that fits, and is more known and curable . I think in my head since I don't have the swelling and not many of the symptoms that you can see, that maybe I don't really have it. Please, please, let me not have this!

I have had to stop doing a lot of things because of the pain and fatigue. I haven't figured out how much is too much so a lot of time I think I may have delayed pain which makes it all the more confusing. I absolutely don't push myself though if it ****** my RSD off right then and there-no way. I used to do that when they didn't know what was wrong with my shoulder and I thought I could push through it and make my shoulder better but this RSD is a whole different ball game and I have no say at all.

I just feel pain in all different areas so much all the time now and it makes me unbearable to be around, my boyfriend is trying hard to help but it's so hard when he can't see it so he doesn't know which part hurts and honestly it changes by the freakin time of day-sometimes I can handle his scruffy face touching my skin-other times it feels like needles and his skin feels like it's on fire when he's touching me. I wish I could have warning signs on my body-different lights-green-it's ok, yellow-use caution/may snap at you, red-keep your damn hands off!! In fact-stay 10 feet away!!

Lol ok, I'm getting a little loopy so I think I should end this now.

Unfortunately RSD doesn't run it's course it is with you for life, some who have been given good treatments early enough have gone into long term remission, I've read of one who was able to lead a normal life for 10 years before it came back but it does.
If you don't well I didn't get to see a specialist until 1 year and 11 days after it started,he said because of the wrong treatments and delay there was no chance of ever getting remission.
Under no ccircumstances should you allow the use of Ice or Hot and Cold Water Contrast Therapy these can and have caused severe blood vessel damage. Nr should you allow aggressive Physio this will prevent remission and is likely to cause it to spread.

I agree with all, but, you MUST have TOS (Thoracic Outlet Syndrome) ruled out!



Pete


asb

LOL too funny! yes, I think that's a great idea! Just wrap me in yellow police caution tape!!

I agree!

If we could get some clever bonce to invent it we would ALL buy the stuff......sad but true

I'm sorry you are having such a nightmare with this cozyc, I hope today is a better day. I think we all deal with the phase of hope where you think there's a chance it will just 'go' (in my defence, my first pain doc told me that 'if i did what i was told it WOULD go, and it was up to me. Unbefrigginglievable.) or that the diagnosis is wrong and you have something much much easier to deal with - but that rarely happens, and unfortunately you do need to accept that you have it and try to deal with the symptoms and changes to your life.

I say that, but I'm still struggling with it myself at times, I suspect I always will. This damn disease can catch you out at any time, any place, and just as you think you are dealing with it, it changes and catches you out. But you have to keep fighting it and garnering pearls of wisdom from the good folk on here - I'd be far worse off if I had to only rely on the doctors for help and advice!

I wish you luck and lessening pain. I hope things get easier.

Bram

I've been told that a routine like 'Tai Chi' is an excellent tool for RSD sufferers, it involes slow, relaxed body movements and gentle stretching....
Hope that helps?


Pete


asb

Reading your message and I know the "freaking out". RSD sucks and the diagnosis is devastating. I have RSD too. My husband researched and I went to Calmar in RI. It's amazing! I wish it were accessible all over the country so people didn't have to suffer and go through ridiculous treatments.
*edit*
-Dana