Hi my name is mike and i am 28 years old. I was currently diagnosed with Rsd of having it for the better part of 4 years. Everyone i talked to didn't believe me when i was telling them of how badly my pain was i mean in fact the funny part one orthopedic doc i had laughed at me and said to me i didn't know what i was talking about and that i was lying to his face! He said there is no way possible that i could have all these pains in random places at my age, that i was just milking the process because i was reluctant to work. Well that was 4 years ago like i said from the start so after that i was transferred to another orthopedic doc and he said that i had a little tear in my right shoulder of my labium i think that is how you spell it, well anyways i had surgery before on my right shoulder before and had 2 anchors placed in there to hold my rotator cuff in place. So at this point the doc thought that this was just a recurring injury so he tried to send me back to work while sending me to a RA Pains specialist. While seeing the specialist they sent me to physical therapy and aqua therapy and all the mean while my pain was intensifying and getting so much worse with my mobility. So they cut me off and said that i am just at my maximum treatment that they couldn't do anything further. So now i am still fighting the oh so reluctant Workman Comp trying to get my benefits back and stop them from fighting me to get these treatments down that i need. I am currently inline for keteamine infusion and blockage or the spinal infusion thing with the blockage with a pump implanted in my abdomen. I am in so much pain but i have gotten so used to the pain over the 4 years of having this but i just get so depressed because of everything that i used to do i am not able to, my rsd has gotten worse to the point to were i have a hard time taking a shower because of my pain. It has gone from just one hand and arm swelling and color changes to both arms, hands, and both legs now. There times that i just feel so helpless and all my friends just say i am just being mellow dramatic plz if u have anything opinions anything please tell me what i can do about this. I mean just 2 days ago i just broke one of my fingers because i fell cause of my pain i tried to grab for something and got my hand slammed into a door and then i fell on my hand funny and my finger broke. so anything would be helpful because i don't want to stop moving around. Thank you for listening to me.

A few suggestions- See a pain management specialist. This could be an anesthesiologist with additional training in pain. Try to keep doing some PT- just not to the point of excessive hurt. It's important to keep joints active. A PT with familiarity of crps would not push you to the point of excessive pain and once they did, tell you to quit it all together. Warm water therapy. Engage a pain psychologist. The pain will affect your life in many areas and it helps to have a person trained in dealing with all the implications that go with the disease. Most people w/ crps need some anti-depressants. Anti-depressants also help to keep the crps in check so it's good on 2 fronts. My injury isn't a workman's comp case but many people who are fighting for it use a workman's comp. attorney. I'd do as much research on the pumps and stimulators. I've chosen not to go with either because of the invasiveness of both. I worry about spread. I did have ketamine and it was a positive experience for me. I need more but can't afford it. There is a subsection in Neurotalk for pain pumps and spinal cord stimulators. You may want to do a search for it. (Look under search above.) Medications are important for me in my treatment but a PM anesthesiologist can help you with these. I'm sure there's more and others will chime in but this is a start. Where do you live?

Hi Podsantus,

I'm glad you finally have found some docs who are trying to help you. Are you on meds to help with the pain while you are waiting for the procedures ?

Reluctant gave some excellent advice and saved me a bunch of typing !

I can't stress enough how important I think having psychological help is. Certainly, antidepressants can help with mood and for some, with actual pain levels. Biofeedback and other modalities can help manage pain. Most important for me is having a therapist that I can vent to and seek help with practical matters (from planning my conversations with doctors to adjusting to the daily impact of living with RSD)

Best wishes.

I agree research is key...treatments and docs. My first pain managament Dr. Was terrible, waited hours. Very condescending. Told me I failed a drug test. Never done drugs in my life. so I drove to get my own test. Passed and got a new Dr. He was very aggressive. I had tendon repair in June 2011, never walked and mri diagnosed red in Sept 2011. Used pain mgmt with meds until March 2012. Had three sympathetic blocks, had thoracic spinal cord stim trial June 2012. Never gotten less than 70% relief except dreaded winter. My permanent was implanted July 10 2012. Never looked back. A little background. I was a 5 K runner and triathlete. The stim let me trade walkers, canes., and wheelchairs tor walking.

Thed has not been rosy. I fell in August 2012 and had a revision. I developed bilateral pulmonary emboli and nearly died. Once we passed that fiasco, the stimulator has been wonderful. So wonderful that when my hands developed rapid spread; I got another one.

There are many options out. There are pros and cons to most. The twin scs work for me and not at all for some. Anyway rsd is overwhelming and id be willing to chat about my
experience anytime I have very few friends from pre rsd. Just dont understand i guess. Luckily made a few new here. I remember being in your shoes.

Pain management is definitely the way to go. I do my own physical therapy. My insurance doesn't cover and it is too rich for my blood right now. As a new rsd'er; pt is important. My Dr always days movement helps even though it hurts. Hope I. Helped. I rambled. Post surgery lil. Let me know if I can help!
TK


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I am so sorry to hear your post - but not uncommon with CRPS. I wish you the very best.

Question to anyone that knows the answer: The reply to this post made me wonder how do we go about requesting a subsection in Neurotalk for ketamine infusions?? That subsection would help so many.