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??

I have found that this group is great for detailed information on treatments and medications. The people on here are very kind and caring.
For more frequent socialization it seems like the RSD/CRPS boards on FB are pretty well populated and people are on there all hours of the day. I belong to one called Ketamine Klub for RSD/CRPS patients and that board seems to be going 24/7. It's a good distraction in the middle of the night.

Liz

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

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.

Two places I have been to are Twin Cities Orthopedics, and TRIA Orthopedics, where I have been at more ore less now since June 2010. I have also seen about 4 or 5 orthopedic specialists and surgeons. My issue goes from my shoulder to my hand now. I am also doing the hunt for doctors and therapists alone. Each one I have seen so far (doctors) has either given up or "referred" me to a different "type" of doctor. The therapists have all given up at 3 months, and all I have read on this say 3 to 6 months OR MORE. Plus add in my infections and now increased pain and spasms... Makes my life very interesting to say the least.

I got a partial settlement and he has been fighting with the insurance company to get my medical bills reimbursed. Not sure what else he can do; he is now working on my behalf trying to get approval for the pain doctor and psychologist, but in the meantime I either endure in agony or try to be seen and pay cash up front if the office allows it.
As for medications - Baclofen and Carbamazepine is all I am on. Been that way since November 2011 after my allowed pain meds and antibiotics ran out after the latest major infection.

Will have to see, so far Facebook appeared to me to be a dead end and of the dozens and dozens of sites I visited and posted on so far, this is the only one I have gotten replies on. And since my hours are so varied due to lack of sleep, I have time to check tons! Next step for me is to find local support as well, as unfortunately online can be a bit impersonal and it is hard to express true feelings and such online at times

You definitley need a pm. Preferebly one that specializes in rsd. It doesn't matter if you have a partial settlement, you should still have the right to choose your dr. I am currently on Butrans, clondine and neurontin. Together they do pretty good. I also have vicodin for break through, but don't need it that often anymore. (Thank you Jesus)
Ask your neuroligist to refer you to a pm. Then workers comp. should not deny you or you can take them back to the labor board. But either way it is documented.

Oh boy...I am so very sorry to hear that you are going through all of this and even more so that you have had to got through it all alone. I admire your strength and courage to keep going and keep fighting even with all the obstacles you have run into. Like you, I do not feel depressed as a result of my RSD which started in my left ankle and has now spread to my entire upper body including both of my arms and hands...but it is a daily battle to not let the RSD win and to start spiralling down the emotional path of defeat. You sound like an amazing individual.

I have felt so blessed since finding NeuroTalk as the people on here are very helpful, supportive, and understanding. It makes a big difference just being able to talk to people who understand what it is like to live with this pain every minute of every day. Even when all I need to do is vent...if feels good to vent to people who understand. I am lucky to have people in my life who are very supportive and caring...sypathetic and all that...but I just don't think it is possible for them to really UNDERSTAND what it is like to live with this pain all the time. The people on here are wonderful.

My RSD is also the result of a work injury and I just recently accepted a settlement offer to put it all behind me. It is not what I really think my injury is worth...all the pain and the trouble this has caused me seems like it should be worth so much more...but the reality of how the work comp system works means that I will never get what I think it is worth. What I have accepted is enough for me to settle all my bills and debt that I have as a result of the medical problems and set some money aside to save for future stuff. The problem for me has been that work comp has delayed and denied treatment time and time again which has made my RSD worse. It's all fairly complicated, but at the end of the day my health is what is important so for me and work comp is really just making my health worse...they do not have my best interest in mind with their behavior...the opposite really in my opinion. But I know my case is different than others because I will be able to return to work. It's been a very very long year of seeing doctors and physical therapy...but I have finally gotten enough function back to hopefully get the release back to full work at my doctor's appointment Friday (I am SO excited about this). Are you on any sort of disability or anything?

The big problem with settlements though is that it closes your case. I really struggled with the idea of settlement because closing all my future medical rights as far as work comp is concerned is a scary idea...but since I can work I still have medical insurance and I have gotten much better care using that as opposed to fighting with work comp over approvals and all that stuff. Anyone with RSD should, in my opinion, be very careful of accepting ANY sort of settlement and if they do so should be made aware of what that means in terms of future medical costs/care. I am so sorry you have had to struggle with all of this...the stress of dealing with work comp only flares the RSD and makes it worse...can't wait for my settlement to get finalized so I can finally put all of that junk behind me. I do not need that in my life...battling the RSD is enough.

It's great that you have found things to help you cope with the pain. As far as reading goes I have a couple of suggestions. One is that it might be worth it to get a kindle or other e reader that you can hold in only your left hand so that ready doesn't aggravate the RSD in your right arm. I know that regular books...even just holding them...are a struggle for me. Reading in general is just hard too because I can't focus like I used to because of the pain...this is a limitation that really saddens me because I always loved to read. Another suggestion I have is audiobooks. I joined audible.com last year when I became completely immobilized by the RSD once it spread and it has been wonderful. I am able to enjoy some great books without causing myself any pain by holding a book. I also listen to them while I do some of my other hobbies as it helps me lose myself in the book instead of in the pain. TV has just started to annoy me...I can only watch so much of it and I found myself watching a lot of garbage on daytime tv that just made me angry after a while. The audiobooks are so much better than most of what is on tv and it has made me happy to get back at least a little bit of my love for reading even if it's in a different form.

A big part of me being able to get my function back has been the physical therapy. I feel very lucky that I got a good therapist this past year who really worked with me to make all of my current progress possible. Not all physical therapists are created equal though...most want to see big improvements in a short amount of time and with RSD that just isn't possible. It's such a slow, slow process. My doctor requested at home physical therapy for me and this was perfect. I couldn't drive or anything for almost an entire year so I didn't really have much choice about getting the therapy at home...but there were so many benefits to it that I never would have thought about before. The main one for me being that everything we did in therapy was stuff I could work on on my own every day when she wasn't there. I was only allowed so many visits in a year but once she saw that I was committed and doing everything on my own we were able to stretch out the therapy over a longer period of time by her seeing me once every 2 weeks instead of twice a week. She would give me a number of progressions for each exercise so that during the time in between I could continue to challenge myself to be able to do the harder stuff once I got the hang of the stuff I just learned. This way we could really set up the therapy specific to my needs. It was a real partnership unlike the outpatient therapy I had done before...most of which you couldn't do on your own at home because you wouldn't have the equipment. Might be something to consider. I know that for me the key to making the progress was doing the exercises every day and throughout the day at my own pace. Progress was slow but eventually I got the function back.

Another thing that might be worth looking into is tDCS. You should read the thread on here about it. It's not too expensive so it might be something you could afford OOP if you had to. I haven't tried it personally yet but I will be discussing it with my doctor on Friday and am very excited about the possibility of success with something since I am not interested in SCS or any other invasive treatments...and the cost of ketamine is a bit beyond my reach at the moment and if tDCS is effective then for me it would be the better option anyway as far as I am concerned.

Sorry to blather on...I really am long winded and I apologize. Anyway...I'm glad you have found Neuro Talk and am happy to meet you. We are here for you whatever you need.

I did accept, according to my lawyer, a partial permanent disability settlement back in July 2011, and according to him the medical portion is still open. The bad thing is, workers comp fights us on every bill, from prescriptions to visits to therapy and more... When my arm became re-infected in November 2011, blood tests were ordered and workers comp won't even pay those. So for now, I do. I pay everything up front - medications, visits, any equipment, etc.

I do agree also the settlement is NOWHERE near the value of loss of our former lifestyle, constant pain, whatever else we have to endure for life, and my lawyers told me this is because it is a work injury. If it was like an auto accident, we would be set for life PLUS all medical covered.

Wish I could find the therapists and doctors willing to work with me as long as it takes... Some of you are very lucky. All mine give me 3 months for either dramatic improvement or I am done. Like now. Have not had therapy all year so far and won't until I get some form of pain management and control. Even my regular doctor said 3 months.

I agree about the tele, I rarely watch whatever is on (no game shows, no soap operas, etc.!). I record things and re-watch them until I get bored (which is often) then switch to something else. Books don't hurt me, I don't use my right arm at all on them. In fact now, I am rarely able to use it at all.

Oh, one other thing I forgot lol... Been told I will never have full use of my arm ever again. Been too long with the muscle atrophy and stuff. Plus 10/31/1988 my right wrist was crushed badly in yet another work accident which is also permanent, my right arm has had surgeries twice for other things, and has even been burned badly. Time for a new arm, no? LOL!

But, as I have told every doctor and therapist I have seen, "You may have given up on me, but *I* haven't"!!