Originally Posted by Kheldar

I have had RSD/CRPS type II since January 2010. It started after damaging nerves in my right elbow. I have the classic symptoms: bad swelling, colour changes, temperature changes (from normal to burning hot to ice cold), hyper sensitivity to touch in various locations, constant pain from low 1 or 2 to absolute 10, muscle spasms in many locations, as well as loss of full range of motion, strength and use of arm and hand due to muscle atrophy. This has affected my right arm, and I am right handed....

I started out on Vicodin and some nerve meds to try to lower the nerve pain and swelling. I have been put through many various medications, but none have worked. In fact, the pain and spasms especially are increasing and spreading badly. I have been through many therapists, all of which have given up on me after 3 months at a 2x per week, 30 minutes per session. I have been through aquatic therapy, of which I have been allowed 4 sessions. I have tried Fluto, which at times can be unbearable but necessary for the heat (I cannot handle cold), massage therapy, limited physical therapy.

I do not currently have a psychologist nor pain doctor, as Workers Comp is fighting me and my lawyer about this. I have not had pain meds since about June of 2010, EXCEPT for the two times I have had major infections in the right arm, one of which hospitalized me. I just work currently with a neurologist in an attempt to control, and hopefully stop, the spasms, which started around my elbow and have spread to include the entire right arm, right side, back right shoulder area, right side of chest, and occasionally left side of chest.

I have had 6 nerve block shots, a cortisone shot, and even a sympathectomy. I was referred to and recommended for a spinal implant of the tens unit thing, which of course was denied by workers comp. Probably not a bad idea in the long run, as I have two tens units and cannot use them due to the pain they now cause...

I am, by the way, at Stage II to Stage III. It is affecting my left arm and has been for over a year, but thankfully limited.

Now the fun part, as if all that hasn't been enough! I get to endure this all, all by myself. Lost my job (this is where it happened), lost my friends (who wants to be around someone in constant pain??), and to survive the year with no income I lost all my possessions.

I am not depressed, it is a constant battle not to be. I have read so much on this and the struggles of others, the treatments possible, the way people endure and try to go on...However, it has been a challenge when people ask me how I am, you know, the facetious and chit-chat question. People I thought were friends disappeared in a hurry when they find out about me and CRPS/RSD.

I also do not ask for help well or easily, I would rather give. I am still struggling to overcome this, because sometimes even simple things are impossible for me.

I also have had to change my die, what I eat and drink, because things like spices, juices, sweets, etc., cause me extremely increased pain that at times makes me want to rush to the hospital.

About the only things I do so far to keep my mind off my condition when I can is watch the tele, try to do things online (I usually have about 6 to 10 sites up at once), music, and read when the pain and spasms allow. I used to do a lot of things outdoors but as it is winter here, and cold causes me almost unbearable pain, that has been stopped. Try explaining why you wear a shirt, sweater, jacket, AND wrap yourself in a blanket in a house at 70 degrees lol! And during hot temps, I still wear a full sleeved shirt or more as my arm chills for no reason, even at 80 to 100 degree temps...

The other thing I do, and this will probably sound crazy, is I get my hair done, got coloured contacts for my eyes, new clothes. Tried to play PS3 games but can't handle the button pressing.

So after all that, I have also looked for sites and people with RSD / CRPS and so far almost every one appear to be sites not used or updated any longer. My only real challenge besides coping with the non-stop pain and spasms has been the inability to talk to others in my condition who understand and can provide support. Don't want to sound whining lol, I have endured so far and will longer.

Oh, not allowed to work either, haven't been able to about a year now. Bad thing, was at my job 5 years and loved it! I have taught myself how to do most things left handed now (shaving is still an issue lol, I still cut myself a lot, and don't ask me to write, that is horrendous!).

Anyhow, that's me so far, and this has taken me about 2 to 3 hours to type. Anyone in Mpls., MN on here??

Originally Posted by alt1268

I want to know since June 2010 what your lawyer is doing about this issue. I know here in delaware it takes 3 or 4 months to get in front of the labor board. Why is it taking so long?
The stimulator is different from the TENS unit. The wires are placed into the spine and the vibration is often a different sensation.
What is your neurolist giving you? He/she could be giving you pain medication.

Originally Posted by gabbycakes

Kheldar,

Nice to meet you. We have many things in common the biggest being we both have right elbow/arm injuries. I also have CRPS II with damage to the Ulna Nerve. My injury was a fall in a rollar rink and involved a titanuim prosthesis of the radial head which is the top part of the elbow where your funny bone sticks out. If also effected my hand and I got RSD from the injury or all the surgeries. Then came the nightmare of my life. I could not move my arm/hand or do anything with it for almost 2 years, in plain english it stuc...! What also made it difficult is I could not find a doctor who had the experience to work with me. I was told "there are 5 surgeons in the country who can fix that problem correctly". Well lucky for me I live 60 miles from NYC and one was at the Hopital for Special Surgery. I met a pain doctor there first who diagnosed my RSD and then he introduced me to a upper extremety specialist. Over the course of 4 years I had many surgeries to correct my elbow/arm and at this point I am at about 90% functioning. I also was treated there for my RSD with inpatient ketamine among other treatments . I did return to work P/T and life has returned to normal for the most part. I mean I wouldn't go riding or skiing in fear I would hurt myself again, but I could do it if I wasn't so scared but I shouldn't. My endurance is not good meaning I really can't vaccum, rake, shovel snow, etc.it's the constant movement which in turn gives me pain but I can pick up 50lbs without a problem, weird. I think the key to my success is after many doctors who did not have the experience I found 2 doctors who worked with me and together with each other. They worked so methodically and I will never forget them for what they did for me. Not that the other doctors where not good but is was the experience, my surgeon has dedicated his whole practice to the elbow and it's complicated mechanics and my pain doctor was just amazing. My injury was back in April of 2003.

One of the other doctors practices at the Mayo Clinic in Rochester, MN. I don't remember his name but I could get it for you , just ask.

The other thing that we have in common is I have many family members who live in MN. Most in the St. Paul area. MN is such a great childhood memory for me, it just seemed so much calmer than the EastCoast.

To end if I where you I would try to find a good upper extremety surgeon. Some are listed under hand surgeons. Hand surgeons study from the elbow down to the tip of the fingers.

Hope this helps.

Gabbycakes