Hi Kheldar
 

I just wanted you to know I read your post. I am sorry you are suffering so much with RSD. I don't have your disorder, but I have a great deal of empathy for those who suffer with it. I have PN, so I know just a little of what you are experiencing. I hope you go see a new Neurologist. You should be getting some kind of relief. Somebody in the medical field needs to address your pain. I know RSD is terrible. Keep in touch here with those that have it. They will try to help you more, and may be better able to direct you to some help. I care about you and I am sorry you are suffering. I am on the Welcome team, and I should have stopped by sooner to Welcome you to Neuro Talk. I am always around to listen. :hug: ginnie

thanks
 

i honestly and truly appreciate your kind words. yes, i do go to therapy, 2 times a week. i would say it helps being able to talk to my ot b/c she is great and she is so patient with me. i have looked for support groups, but they are all so far from my home. i was recently looking into neuro-psych, which is supposed to include some sort of coping and therapy sessions or something, but unfortunately, my injury has not always been priority in my house. i always say that people will never know what rsd is like until they experience it. i also do not really hang out with friends b/c i don't really have any. and besides, i feel that they do not really get it.
since you have rsd, would you say that you are hadicapped or disabled?

i can relate late to you in some way, although my rsd is only in my hand and spread up my arm, and i now have a claw hand. i completely agree with you on the friends comment because i feel this way too. keep hope, that is all we can do.

I know this wasn't addressed to me...but I would say that I am hanicapped/disabled. Not completely and totally disabled in the sense that I can't do ANYTHING...but RSD severely limits my ability to perform many life activities and things that I used to be able to do. I've learned to function despite some of these limitations but there are other things that I just simply cannot do. And on bad days there are a lot more.

But I try not to focus so much on the things that I can't do outside of working towards goals in therapy in the hopes of some day being able to. I try to take a more goal oriented approach to any of my limitations and those which I have yet to conquer are just things for me to work on. I celebrate every success that I make...even small things like being able to reach for a plate in the cabinet or wearing a shirt that I couldn't before...and I continue to hope that with hard work and time that I will conquer all the other things. If I can't...then I can't...but I won't stop trying.

One thing that I can tell you...which may or may not be helpful to you...is that I have been very lucky in having the support of people in my life who don't treat me like I am broken. They are supportive and incredibly helpful...but they just treat me "normal" and I think that has been a huge positive in my life. They help me with things that they know are outside of my ability, and ask all the time if there are other things that they can do to help me out and let me know that they are always there if I need anything, but my RSD is never the focus of any conversation or get together. That sense of normalcy has been so important to me. They have never doubted the severity of what I am going through or that it is real...but I choose not to dwell on it and make RSD the center of my existence. Not easy considering this monster is always with me and I am always in intense pain all the time...but that sense of normal with family and friends is an important part of my fight against RSD and helps to remind me what I am fighting for.

That doesn't mean that you don't focus on your health and on getting the treatments you need...my life seems to revolve sometimes around the therapies and things I do to help take the edge off the pain and dealing with flares and all that. But as much as possible...try to hang on to anything that makes you feel like your old self (at least on some level). Try to laugh and smile...enjoy what things you can. It is hard...I know...but it is well worth the effort in my opinion. I know things would be very different for me if I didn't have these supportive and loving relationships with the people around me.

So even if your friends and family don't seem like they really "get it"...try to maintain those relationships the best you can. No one needs people what are negative or poison in their lives (you should cut anyone like that out immediately) but as for the rest they cannot help that they do not understand the full extent of your pain. Even within your physical limits you should try to do what you can to spend time with the people in your life that you care about...and time not talking about RSD and the pain. Believe me...time with family and friends can be a welcome distractions from the pain and can also help you cope with it.

I'm glad you have a good OT...that will be a huge help in the long term with maintaining and getting back the function. Keep at it and keep fighting for the treatments you need to get relief from this monster. This includes whatever you need to keep yourself sane though all the trials that we encounter in our fight against RSD. There are things that the doctors can do to help us and then there are the things we can do to help ourselves...and both are SO important. I wish you the best and please remember that we are all here for you.

Update.

Saw neurologist Tuesday. WTF. 30 minute appointments. No wonder they male about $250k per year.

Anyhow. Came prepared to fight. And did exactly that. My RSD has spread officially, covers my entire right arm, shoulder, side and chest, with occasional left side and neck. Also have small skin loss daily with finger sweating. And a lump on a finger.

Showed neurologist the research I have done, AND WHAT THEY CAN DO!!! He said they (he) deal with acute pain, not RSD (chronic) type and said I should be on narcotic type meds to control the pain.

He did agree with my "requests" and ordered a right arm bone density scan and blood tests to determine if my bones and such are as bad as my right arm muscle atrophy. Those I set up myself for next Tuesday.

He agreed with certain pain clinics choices I made, but there is nothing any of us can do to get in without workers comp approval. I have noone to go to any office visit anywhere, it is just me.

However he increased my meds a bit to try to slow the spasms, they get unbearable at times and worse when my arm is warm, but agreed I cannot use cold at all without repercussions.

I think I scared him a little, or impressed (nit sure) with the amount of research I literally showed him on my laptop. And when he stated things a pain doctor could try, I added like 15 more options.

So I continue to wait, and endure. Unlike you all, I have NO ONE I can talk to. I have no family, lost my friends when they learned what I have and must endure. There is a HUGE difference between typing and live talk. Do not try to say there isn't.

Oh and someone had problems returning to work... I had exactly the same problems. My job REFUSED to let me work within doctor restrictions, even when we proved they were medically necessary. We tried unrestricted use of my arm, hospitalized me. I was forced out of my job after 5 years.

Do not accept an out of court settlement. Make them go to court and explain to the judge why they won't let you work, and make sure your lawyer leaves full medical on RSD open. And get a great QRC now, one your lawyer recommends preferrably. ASAP.

Well, that's it. I'm off, for who knows how long, to endure this alone if I can. Thanks for the reply but if any future ones are done I may not see them.

Hi well I have been off work and have a lot of limits. I hope one day I will be able to go back to college and work. Right now just trying to take a day at a time. I have done some different kinds of therapy mentally for this because I really had a hard time coping. I still do but not to the degree. I am sorry you don't feel a priority in your family. Do you drive? Can you call around about making an apt with the neuro psych? What state do you live in?
I also have lost friends due to this. I know though isolation is not healthy for this. What I have learned is that people may not understand this but some try at least. I don't expect them to understand but just want a friendly check in and no dumb comment.
Sorry again are you in school?
Back to the disability question. When I was at Cleveland Clinic pain program and with some other pain doctors they have talked about and encouraged trying to have a life in this condition. Now on some days it is near impossible but on the better days to try to push oneself. So for ex I took a computer class when I had a better day etc. I encourage you too.

Kheldar, I didn't read this whole thread but came across your post above. Is there anyone at all that will go to doctors appointments with you? Have you gone to an emergency room yet? One approach you may want to try is contact your congressman's office, either email them through their website or call them on the phone and see if you can rattle some cages. This may work and or get the help you need pronto!!

Dear Khelder
 

I hope you go see a specilist that can handle RSD. The doctor who brushed you off has no compassion. You need help, and I do think help is available if you can find the right doctor. Maybe post your area to us, and someone who lives near you could recommend another physician to help. don't give up. I am terribly sorry you are suffering like this. You are in my thoughts and prayers. ginnie

No, I do not drive unfortunately, but I am still in school and will soon go to college. It is very tough. My parents were supposed to call neuro psych, but I have no idea what is going on with that. I currently live in Ca. as well. The reason I asked the disability question was b/c I had someone not too long ago tell me that I was not disabled or handicapped, and it kind of bothered me. On a better day, I do, stretch more, and do more of my therapies, but my pain is always at an 8 out of 10 or above from the time I wake up,and from then on, it just gets worse. Then, that makes it harder for me to focus or really want to do anything in school. I am quite depressed but I "wear" a smile in front of family and friends. I went from the star and great dancer on my cheer team to someone who is in extreme pain. Just venting because as I type this now, my eyes are watering.....

catra
 

i agree with many of the things that you are saying, and i once again thank you for your support. which therapies would you say help your rsd? which don't? for me nothhing with heat or cold helps, but the mirror therapy helps when i can tolerate resting my hand and arm on the towel behind the mirror.