Originally Posted by catra121

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.