RSD spreading??
 

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 :eek: 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. :confused:

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. :hug:

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! :D

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

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 :grouphug:

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

There is help
 

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

Man, do I ever understand those feelings. I think I feel spreading at times myself although it is not as detectable as yours. That's just one of the things with this disease that sucks, it's different with everyone. There just needs to be so much more research into this.
From my experience, slow, steady, gentle movement does help and keeping "good" body parts moving does help for me as long as it is not painful or traumatic. But, that may not be the case for you.
It's hard to find a pattern with RSD/DRPS with me anyway. The only consistency so far seems to be with the nerve blocks and meds. I just can't take as high of a dosage of meds. as my Dr. would like.
I did try the spinal cord stimulator and was happy with the pain relief and subsequent push in range of motion afforded by that in physical therapy, but I did not like the trade off of loss of range of motion and pain in back and neck.

Thank you for the replies ;) even though I don't write too often to a lot of the other threads I see on here because its hard for me to write I general, I do read a lot of them and reading them have helped me so much to not feel alone which means so much.

Just wondering, the horrible bone crushing type episodes some of us have-does anyone know if this pain is due to osteoporosis secondary to the crps? Or just a type of pain that feels like deep bone smashing pain but it's really not. I just had a really intense episode in my forearm that last over a minute-instead of a vague pain on and off throughout a period of time. All my pain varies so much throughout the day, minute, etc. A lot of my electrical episodes now only last about 20 seconds at most. Before I was on the neurotin I would have the bone crushing type episodes continuously along with the constant aching-so much I wanted to rip my arm off and just cried. Now that I am on the neurotin with no breaks it has definitely lessened that pain as well as my hypersensitivity and burning. The bone pain and aching is the same stuff I now feel in the feet come the evening which scares me :(

I have found something that may help-I think every two days I need to just give in and stay in bed all day and "recharge", especially since I'm still pushing myself more than should/figured out. The night of the day I recharged was the first night in two weeks that my feet didn't hurt :) finally-I did something right! :) now, to find a way to make my arms and shoulders and feet not hurt at all...hmmm ;)

It is known that RSD can cause osteoporosis along with muscle waistage. So far haven't got osteo although my lower arm is now 1 & 1/2 inches narrower than is used to be and the bicep 2ins narrower

I'm no help really, but understand your feelings. I have so many random aches and pains and usually I have no idea why it is happening!

I think mine is spreading to my foot, leg (up to my knee) Right now it is in my left hand and arm. My doctor seems to be discounting the pain and still thinks it is just tarsal tunnel.

Amen to that Bram! This damn disease is so unpredictable!
And you're right we are all better off with the wisdom gained from each other.
I've tried many treatments and will probably try more.
I can usually tell the "sales" tactic behind some of the treatments offered at Dr. offices. But here it's so much better to get a "reality check" on actual experiences of others and that's another way we learn from each other.
:grouphug:

Just my opinion, and easier said than done - but, I really think you should find another dr. or get a referral or something. It will be very important to your future care to get a correct diagnosis. This is especially true if the SRPS affects your work. You may need consistent records for FMLA and sick time etc.

The RSD has already been diagnosed in my arm and hand. I am not working and haven't for nearly 2 years. I am on long term disability insurance and working on getting my SSDI.

I also have RA, chronic migraine, IBS and secondary Fibrmyalgia. I see a Rheumatologist, a Pain management, Neurologist and my regular doctor.

Hi cozyc,

Like ddswaffer, my daughter tried Calmare (but in NJ), and thank God it put her into remission. It lasted 3 months then we needed 4 booster treatments and she's back in remission.

I'm so sorry you have to battle this monster :( It's horrible! I love your warning lights idea! It's really hard for other people to realize how painful it is, let alone try to figure out is it a horrible pain day or merely an awful pain day ... a little set of colored lights on the forehead would be handy! (it helps to keep a sense of humor)

Anyway, several of us have had good luck with Calmare, and it doesn't work as well if you've had ketamine, so if you want to consider it, you'd probably want to do it before doing ketamine. Best wishes and prayers for finding the right combination of treatments for you!

I have RSD in my right leg with it spreading to my left leg. I was told by my physical therapist who I have been going to for 7 years as well as my pain management doctor whom specializes in RSD that exercise is extremely beneficial to a patient suffering from RSD.

Its why they almost always prescribe physical therapy. He explained to me that because of RSD being a disease that so often takes over the body and its degenerative effects on muscles and such that it is crucial to continuously use them to fight it off. He did say to always keep to what your body can handle and he highly highly encouraged me to check with a physical therapist to be sure I was doing appropriate exercise without causing damage.

Obviously contact sports aren't beneficial to my condition but routine exercise that my body can tolerate such as treadmill, weighted leg lifts, the shuttle and so on are really good things to keep up on. I for sure would talk to my doctor and even ask to be sent to physical therapy to see what they suggest. Good luck and God bless.