When you were first diagnosed with RSD/ CRPS what did you do??? Meaning, what therapies, medications, etc...? What worked? What did NOT work for you?

When you were first diagnosed did your Dr. say if he/she thought you would recover? If so, in what amount of time?

Anyone here have RSD and not know why (like you had no injury that you could link it to)?

TIA.

Once it was confirmed that it was RSD/CRPS II. We both sat there and cried.

He started it!

Almost every time I went to see him, he would start crying because there is no cure, and he desperately wanted to help me get out of as much pain as possible.

Sadly, he is no longer my doctor because they quit accepting my insurance. Now I am fighting with a another for pain meds, and still looking for one that will show compassion, and write the prescriptions that are needed to at least lower the pain.

Yesterday I found out my insurance was cut off as of Jan 1.
Im still trying to get that straightened out.

I hope you have better luck than I at all this.

Before I was diagnosed I cried and screamed in pain. My family Dr. cried with me and listened to me scream for a long time. He would talk to me for hours on the phone trying to calm me down and help me to get through what I was going through. I would say he told me at least a 1000 times to get in a hot tub and soak, lay on a heating pad and handed me every med out there for cronic pain that was made. He never ever doubted how much pain I was in even though I wasn't diagnosed. Thank God he didn't or I would have most likely killed myself. I'd say it was a good 2 years before I got the diagnoses of having the RSD. I think what is worse about having the RSD is having it and not getting a diagnoses because you can't get the help you need to calm the pain down without the diagnoses because of the narcotics that are used for the pain.


Once I was diagnosed I was scheduled for SGBlocks right away. I spent time in PT. Not the kind that makes you lift weights but myofasial release and lots of massages. I got triggerpoint injections of lidocaine, mericaine or ketamine. I tried every pain med out there and muscle relaxers and ended up on Methadone and lidocaine patches because I couldn't handle anything else.

A lot of people here are on Neurontin I noticed and it seems to help them. I couldn't take it. I honestly have a large popcorn tin full of meds that I couldn't handle for anything and threw away 3 times that.

I also am in councelling due to depression which was made a lot worse by the RSD. I honestly believe that councelling is a must for an RSDer. You go crazy from the pain and not being able to get it calmed down for so long. I think depression meds are a must also if you can take them, I can't but I wish I could.

To me RSD is like a war that we are fighting and we need a good army to help fight it because we can't do it ourselves.

Lidocaine patches are good also. A lot of us on here use them.

I swear by the blocks. I just believe they are a must for RSD. I also don't believe that there is a window of time like some Drs. say there is that the blocks work for a person. I saw different in me and 3 other people in this area. I know they don't work for everyone but I see so many people that got their pain down so much with them.

I believe also that you can get it to go into remission in some areas and some people are in 100% remission.

Also you have to find the right Drs. that will help you deal with it. You need a good PCP to refer you out if you need referrals and also help with meds when the PM Drs. won't. You need a good PM Dr. if you can find out. In our area we have so few good ones it's unreal. You need a good Anesteologist for the blocks if you don't have a pain management Dr. that does them. I think the Anesteologist are better with the blocks myself. I also think you need a good Physical Therapist that knows about RSD and also a good Councellor that knows about RSD or cronic pain.

This is just my point of view but when I read what some of these people go through on here I see that they are basically going down the same path. As I said it's sure a war you can't fight or win by yourself.

Ada

Speaking from my experience only , they will only tell you there chance to totaly overcome RSD and that you must work hard on your part ... at first .

Later comes the reality lessons on case by case basis . Some RSD cases are relatively minor , others , well you know .

When you were first diagnosed with RSD/ CRPS what did you do??? Meaning, what therapies, medications, etc...? What worked? What did NOT work for you?

I sat there and said HUH?? He gave me a couple of meds, something for high blood pressure (which I don't have) and something else. Of course they did nothing for me at all. He wouldn't give me pain meds at all. Had to go to PT because I was on crutches and couldn't walk on my own at all. Even though it hurt so bad and I was always crying from pain I did eventually learn to walk again with a combination of in office and pool therapy. I loved the pool therapy!! Later a second round of PT which they discharged me from because it was making me worse. I've been on every antidepressent there is and can't take any of them because they have no effect except to make me a raving lunatic!! That's after only 1 week of taking them too, so I always stopped. Neurontin made me a lunatic and everyone's life and living HE--!!! So far only pain med and baclofen have helped me to at least have a bit of a life. I clean house and that's my therapy now.


When you were first diagnosed did your Dr. say if he/she thought you would recover? If so, in what amount of time?

Told me flat out there was nothing to be done but meds and go home and look RSD up on the computer. Rude way to learn there is no cure and that it'll probably get worse. 11 months later I was full body and fully believe it was due to VERY inadequate care and no pain meds.


Karen

Venessa,
When I was diagnosed with RSD I was told that I would never fully recover. That I needed to accept my reality and go to pain couseling to learn to cope. Yes, some really did care about me and wanted my pain to go away and they listened to me cry to but..

You know my story now so what do you think about what all the doctor's told me?

They were WRONG!

If I had listened to them and believed them. I would not be where I am today. I know that they were trying to help me to the best of their ability but...they were so wrong. All of them and I saw many, many doctors.

So if you do have RSD and you don't have some fixable problem that is mimicing rsd symptoms then I don't see why you can't be one of the few who does recover. I think that doctors should be telling people about those few rare cases that do improve so that you keep trying. There is always hope.

I was suicidal so many times because of doctors but something deep inside me kept me fighting and searching for answers.

My opinion in simple terms is, screw what the doctors predict - proove them wrong and get better. Maybe then they will think twice about only sharing the bad news.

Peace,
Lisa

I read your story, Lisa. I am glad that someone who "recovered" is here. Maybe you didn't have RSD and maybe you did, but either way it gives me hope to hear about that. I think that the majority of people who have "recovered"/ went into remission just don't post to these message boards and tell others. Thanks for telling others.

I heard another recovery story last night that gave me the encouragement and hope I needed. There is always a chance! And I am going to keep on trying!

Hubby suffered a major chemical burn to his leg in 1995 - Shortly there after he was diagnosed with RSD.

Treatments/Attention he received that worked:

1.) Hot Tub/Spa Therapy - No weight or pressure on the extremity
2.) Tens Unit - Helped a little
3.) Channel blocks (calcium) - Into his lower back for leg RSD
4.) Pain Management Clinic - Mayo Clinic Rochester Minnesota

What didnt work:

1.) Ice Therapy
2.) Neurontin (caused HORRIBLE mood swings)
3.) Topical Creams


It took years of therapy, pain managment, etc to get his leg "under-control" - He still deals with pain and an occasional cramping but it is managable and not totally ruling his life.

~ Our New Saga ~

Hubby found a job driving/transporting people (kind of like a taxi but for employees of a specific company) - Vehicle was set up decent for his leg (plus he now has brace) and driving did not effect his leg OVER ALL but there were days when he could not work and delt with pain, cramping and discomfort. He delt with it as best as he could as we have 3 children and he was always our primary wage earner, he felt if he did not do something he was not doing his job as a father and husband. (That male pride thing - Even though he suffered...)

After working this job for a year (some months putting on 10,000 miles or more) he developed ulnar nerve damage (your "funny bone") in both arms. This vehicle he was working in did not have any ergo for his arms, thus the vibrations from the vehicle on roads and on "off road" areas like by railroad tracks and the long miles resting his arms on the side of the door and arm rest caused the casing around the nerve to be crushed around the nerve and there are also other areas of compression.

He was diagnosed with the Ulnar Nerve Damage in early April of this last year 2006 - They did physical therapy for months, tried braces, etc and finally had to resort to surgery (Ulnar Nerve Transposition)....They started with his right arm first.

We were told there was a 50/50 chance that he could develop RSD in his arm - But as hubby had another surgery (approx 4 years ago) with great success we were looking forward to positive results and no RSD flare up.

We could not have been more wrong. Surgery took place in October and after a few weeks of therapy with little to no success - he was diagnosed with RSD in his right arm.

Needless to say all further surgeries have been put on hold (so he still has damage to his left elbow and both wrists...)

And here we go again...........

Hubby is currently on:

1.) Ibuproferen 800
2.) Hydrocodone 7.5 3x's daily
3.) Lyrica
4.) Cylexia
5.) Zanaflex (is that how it's spelled) for muscle spasms

- I worry about all the meds he's on - about it being too much, how it is affecting his body (stomach, etc), We worry about possible addiction to hydrocodone (when in reality it does not even last all the time it should so why is he on it?), The depression he has gone into not being able to provide for his family (Work Comp is fighting his case after paying for 4 months - cut him off, SS has denied him twice - before RSD diagnosis - and we finally got an attorney, and his long term disability he paid for and should be getting - his employers did not file the paperwork or even let them know about the claim and we've had to fight to get that moving and are still working on it), so it's been tough on him. We do have faith that it will all work out - It's just all the awful pain, waiting, wondering, fighting people who are supposed to be responsible financially - aka WC and stress. It has finally gotten to him (he's always been a positive person) and now he's had to have an antidepressent to get through the days.

We've asked his Dr for an non-narcotic alternative for pain - He did not give us any answers just upped his hydrocodone, He actually has 3 dr's so were going to the next one down the line to see if he can get him something...Does anyone know of a non-narcotic that will work??? Or at least something that is not addictive?? Any help in this area would be GREATLY appreciated.

We try and stay positive - We pray a lot too - It's hard some days but we know we will make it - We've been down this road before and I will research, research and research some more until we find something to put this into a managable state again.


HubbyWithRSD

He had Sympathetic Nerve Blocks and those worked for him too.

HubbyWithRSD

How long did they work?