[justwantanswers]

I posted a few months ago searching for a dr in my area. I have been suffering for 11 months with no answers and the wrong treatment. Finally fed up I returned to the only Dr I trusted, because everyone other one only seemed to be concerned about the money from comp theyd be getting, not my health. Two weeks ago I went back to Geisinger in Danville. I wrote down a list of all the symptoms I experienced since they didnt all start at once but progressed each month. He lookd at it left and came back and said I beleive you have RSD and explained it, referred me to a neurologist and for another mri and bone scan. I went back today for my follow up, and it was confirmed RSD Type I. I am so relieved to finally have the right diagnosis and be able to start the right treatments. I will be starting pain management, and they were talking about nerve blocks. They are going to try a Dr locally but if I dont see relief they want to refer me to Dr Schwartzman. I have done a lot of research since one Dr hadmsuggested RSD but then retractd his statement. Im hoping to get insigt from others and what to expect from different treatments. I understand everyone responds differently but I would like some personal insight.

As much as I am relieved to have an answer, Im so beside myself. Im having a hard time accepting this, more specifically the fact that my life may never be the same as I was a year ago. I lost myself and Im afraid Im going to let this ruin my life.

[catra121]

I completely understand your relief at finally having a firm diagnosis. RSD is a horrible thing and I am sorry that you have it but now that you KNOW what it is you can finally start moving forward. Life may never be the same but realize that it can get much much better.

The most important thing that you need to understand as you begin treatments is that there really is no miracle treatment. I made the mistake of thinking that I would get a lumbar sympathetic block and it would take my pain away and everything would be fine. It didn't and I felt crushed. Just remember that what works for one person doesn't necessarily work for another so instead of being discouraged by failures stay strong and just move on to the next thing.

And realize that even the treatments that work are slow. Physical therapy is SO important in terms of getting the function back...but it takes time...months and months. And when it comes to getting enough pain relief so that you CAN do the therapy it is often a matter of using a lot of things that provide SOME relief (no matter how small) rather than there ever being one thing that just takes away a lot of the pain.

Stay strong...having this diagnosis is the first step to getting your life back. I know the future can seem dismal but you need to stay focused on working hard to get your health back. It takes a lot of committment and hard work on your part...the doctors and therapists can only do so much. A lot of it has to come from you. If you feel yourself starting to lose hope or having a difficult time coping, definitely consider seeing a therapist. Our mental health is just as important as the physical...especially when you are dealing with a lifelong chronic pain condition.

Remember that we are here for you too. It helps to talk to people who really understand what you are dealing with on a daily basis. That support and understanding can help keep us sane. Ask any questions you need to and feel free to vent about anything.

[Kheldar]

Originally Posted by justwantanswers

I posted a few months ago searching for a dr in my area. I have been suffering for 11 months with no answers and the wrong treatment. Finally fed up I returned to the only Dr I trusted, because everyone other one only seemed to be concerned about the money from comp theyd be getting, not my health. Two weeks ago I went back to Geisinger in Danville. I wrote down a list of all the symptoms I experienced since they didnt all start at once but progressed each month. He lookd at it left and came back and said I beleive you have RSD and explained it, referred me to a neurologist and for another mri and bone scan. I went back today for my follow up, and it was confirmed RSD Type I. I am so relieved to finally have the right diagnosis and be able to start the right treatments. I will be starting pain management, and they were talking about nerve blocks. They are going to try a Dr locally but if I dont see relief they want to refer me to Dr Schwartzman. I have done a lot of research since one Dr hadmsuggested RSD but then retractd his statement. Im hoping to get insigt from others and what to expect from different treatments. I understand everyone responds differently but I would like some personal insight.

As much as I am relieved to have an answer, Im so beside myself. Im having a hard time accepting this, more specifically the fact that my life may never be the same as I was a year ago. I lost myself and Im afraid Im going to let this ruin my life.

I am glad you were told finally and explained what it was. I was told just that I had CRPS / RSD Type II due to damage to nerves in my arm, sent to therapy, and that's it.

It is painful. Thankfully you are also in pain management. Depending on location, they may suggest cortisone shots which are supposed to last a couple months for nerve damage. (Didn't work for me, mine lasted a day due to my CRPS). Nerve block shots were great, they mad my pain go away totally for a day, sometimes as long as 36 hours or so, but I was limited to 6 shots. Intense therapy was done 1/2 hour after shots (trying to straighten my arm). My next stage was a Sympathectomy, as the spinal cord stimulator was denied by workers comp and we wanted to get this pain under control. (It is not a cure-all, but it did send my RSD into temporary remission for about 2 months!). Don't consider that unless there are no other options, there are side-effects big time... Water therapy can help also, for desensitizing and motion as the resistance is not huge. There are other treatments too, unfortunately these are all I have been through. Make sure you keep up with a GOOD pain management doctor and neurologist and therapist who will treat you long-term not short term. (mine all but neurologist have dropped me after 3 months, and I have never had a pain management doctor ever).

Many of the posts I have read here and other places mention other treatments also, but individual results will vary as well as being actually able to undergo these treatments. Private insurance seems to allow for many more options versus workers comp but don't stop trying and work with doctors to find treatments that work for you. YOU are in charge not everyone else, so if something does or does not work, tell them and keep trying. I also read that the "no pain, no gain" approach to therapy is wrong for us with RSD / CRPS Type II. You need to build up into things again according to the therapy research I have done.

There are many here also who have been able to try other treatments, hopefully you can try theirs with success!

[alt1268]

I remember the first time I read about rsd. I too thought my life was over as I knew it. I became very deppressed and never wanted to leave the house. Which of course made it worse. When I finally got put on an antidepressent I was ready to end it all. Now I am back (overweight but back) on feet and feeling pretty good. I go out as much as I can tolerate and walk as much as I can without the need for assistance.

Try and be positive and stay active as much as you can.

[kathy d]

Hi Justwantanswers, it is nice to meet you and welcome to our club here. I am sorry you have gone for a year with no real help or answers. The medical community always wants to think we either overexaggerate or the pain can't be that bad. They can drive you crazy. You have to do what is right for you and stand up for your health. They will just about drive you crazy (like what they have told you this last year) telling you to do one thing then another but hang in there.

AltAfter seven years I have found what is right for me after I tried just about everything. There is no real great secret of what works because everyone is different. I've been to Dr. S since 2006 and in the beginning I thought he was compassionate but after a real bad experience with ketamine and falling in Hahnemann ICU (ketamine was working but Hahnemann nursing staff about killed me) I have lost alot of respect for him and his office. I would never go back to Hanemann again. He will prob want you to have lidocaine and if that doesn't work then ketamine. Also, his waiting list is about 2 1/2 years so you might want to get on his waiting list now and then start looking around your area for good doctors that can help you and then if you need to see Dr. S then you have that option later to see him.

Alt1268 said "I remember the first time I read about rsd. I too thought my life was over as I knew it." I hear ya on that one. I believe I cried the first year I had it as the relentless pain was full body and no one understood what I was going through...some even though I was making a big deal of it and it can't be that bad (yes and they were family members). I was so hurt both physically and mentally during that time but seven years later I feel that my insides are healed but my outside is still mending. It is a long hard struggle but you can get through it. I have found iv's of natural vitamins and trace minerals to work wonders for me. I have even gotten off of all pain meds after five years! It has been a year since I took any pain meds. I am exercising now and my burning pain is close to being gone...after Dr. S looked at me and said "He could not help me." I want to prove all of them wrong and God is healing my body more each day. Faith and a bit of humor has gotten me through it all. Best of luck to you and hang in there...take it one day at a time.
kathy d