When you were first diagnosed with RSD/ CRPS
 

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.

We both cried!
 

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

He started it! :D

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. :mad:
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!! :D 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

:Good-Post:

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!

Our Story
 

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

PS - Forgot to Add
 

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

HubbyWithRSD

How long did they work?

The first thing my doctor said was that it looked like cancer and I'd probably lose my leg.
Obviously, I panicked. When he said RSD instead, I was relieved - foolish child who didn't understand what that meant that I was. The doctor was very clear - if treatment was aggressive and they hit on something that worked, my chances for remission - he always said remission, never cure- were good. The first therapies that I tried were nerve blocks and epidurals, then a TENS unit, PT, and an arthroscopy to check for any physical problems.....
The nerve blocks gave me relief for about a week each.
Nothing from the epidurals or TENS unit, and PT made things worse. The arthroscopy made things spread.
My doc gave me narcotics for the pain, and it helped, but I hated taking them, because they made me fuzzy.

I was lucky - about a year in, I went into spontaneous remission. I was thrilled.....until it came back with a vengeance about 6 months later, and hasn't let up since.

it wasn't until 4 years into my diagnosis that I got onto Neurontin, which has helped me with pain control quite a bit. To this day, every doctor I talk to is pretty clear on this - you have to be aggressive with treatment in the early stages and try for remission - it becomes harder as time goes on, and the damage can be more extensive as time goes on. I know that sounds bleak, but you CAN reach remission. We're all praying for you!

to hubby with RSD
 

Over 20 yrs ago I had my left ulnar nerve transposed - 3 times! and a 4th operation after that.

the 1st surgery moved the nerve and with a few months the pain came back. The 2nd operation showed that the nerve was embedded in scar tissue again so they cleaned that up and put "permanent stitches" around the nerve to keep it in the new position.

Then the "permanent Stitches" popped! The 3rd operation was called the "Learmonth" procedure. They removed all the scar tissue and the mylelin sheath around the ulnar nerve, cut thru all the muscles, and placed the ulnar nerve near the median nerve. This surgery was very diffiucult and took over 9 months to recover from but it did the trick.

Except, a yr later the pain came back again. They first thought that I would just have to live with it. They didn't call it RSD back then. But then they decided to do exploratory to double check that the scar tissue didn't grow back. What they found was down by my wrist, fascia had grown around the ulnar nerve and was practically severing the nerve it was so tight. The removed it and that was the end of my surgeries.

It's over 20 yrs later and my left arm is doing great.

My RSD experience with with trapped nerves in my ankle not my elbow. I always thought it was strange that I had 2 nerve - entrapment issues with different nerves 20 yrs apart. Is it common for people to have multiple issues with nerves?

anyways, when I read that your husband had issues with his ulnar nerve and had a transposition, it made me think that maybe your he has scar tissue around the nerve like I did? Maybe another surgery could help?

I truly believe that the doctor I found to do th 3rd and 4th surgeries is the reason why I got better. The first 2 doctors were ok but when the pain came back they weren't interested in going back in again to see if anything else was going on. If I didn't find him, I don't know what would have happened to me.

Just wanted to share,
Peace and hope to you,
Lisa

I was a very active 14 year old. I was in gymnastics 24 hours a week. The first week of June right after getting out of school, I possibly broke my foot. They are now debating whether it was broken because one doc said it wasn't and 2 said it was but they were both pointing in differnent places so I don't really know. Anyways, it hurt in the cast, but I thought it was from the injury. After getting out of the cast in July, they put me in a cam walker and told me to ween my way out of using it along with the crutches. Well, it took me a whole month to get off the crutches, but I didn't wanna use them when school started the second week in August (school starts soooooooo early in South Carolina). I shouldn't have stopped using crutches, but there was no way I was getting around my high school in crutches.

The doctors (not my regular ortho doc, he was out of town everytime I had an appointment) kept on saying that I was exagerating and babying my foot and I really needed to get out of the boot asap. I tried one day at school and felt like I was gonna DIE. It hurt SOOOOOOOOO bad. After that, I went back to the boot for a while longer. We kept on going to visit the docs and they kept on getting mad at me. My orthos nurse practictioner got really mad at me for not being back to normal stuff and back in gymnastics. Then after my regular ortho came back, he realized that after knowing me from 2 previous and minor injuries, I normally bounced right back and he knew that something was really wrong. After many tests and stuff, he diagnosed me with RSD. I didn't know what it was and he and my mom kept really quiet when I asked what it was and if it was curable. That scared me lots. I did tons of research and just cried when I finally understood what it was.

I then ended up going back to crutches for a few more months until January when RSD took over both legs. I then moved to a wheelchair. I have had one nerve block done. It ended up making the RSD worse so they didn't dare go for anymore of those. I had 2 creams for my feet. I don't remember exactly what was in the first one, but it didn't do anything for my foot (before spreading to other foot). It didn't help, but it didn't make it worse. I stopped the cream. Then I was given a second cream with a vasodiolater. Unfortunatly, it led to a SEVERE allergic reaction and left me with Steven Johnson's Syndrome. It took everyone awhile to diagnose me with that because of the RSD and regular ortho was out of town. All the other docs said it was a rash, cellulitis, dermatitis, nothing (hated that doc) and tons more. That slowed things down a bit.

I went through lots of physical therapy. One place didn't really do much. Another place my mom thought was good and was happy with, but I didn't feel like it was helping at all. It made the pain even more unbearable to where I had to miss school the next few days.

I'm about to start intense physical therapy in 3 days and go homebound from school. Its gonna be 35-40 hours a week for a month. I'm gonna be the second person to go through with it at this place. The person before me was also a kid and now she is able to roller skate and do almost everything she was able to do :) They feel good about me too. I'll let yall know how it goes.

Hey,

I was very lucky to be diagnosed within 2 weeks of symptoms starting. The first rhuematologist I saw told me that I was going to have to have my arm amputated (it was black and totally dead). However, I got admitted for inpatient physio, OT and hydro along with loads of meds helped me to get some use back in it. As my RSD spread and I got worse the doctors told mum that they thought that it would be dreadful for a couple of years and then improve (basically, two years of getting awful, 1 year of bed bound and then 2 years of recovery).

However, I'm now 5 years in and continuing to go downhill - but it might not be due to RSD.... (have since been diagnosed with several neuromuscular issues which don't help the rsd at all!)

I guess in the end no one knows - but physio DOES help... it gave me my arm back... it's a shame that whatever it is has ripped the use of it from me again, but PT and especially desensitisation are DEFINETLY worth doing.

Love

FRxxxxxxx

Oh, do let us know how it goes!! I am thinking of you and praying that this will go well for you. I sure hope so!! :hug: :hug:

Currently I go to PT 17 1/2 hours a week. Rough, but worth it... so I hope it'll work out for you, and I know how you feel. :hug:


Thank you for sharing your story.

Blocks
 

Hey there - It's been a while now but from what I remember they worked pretty well and relieved him enough to tolerate therapy - For some reason they had to stop - Insurance? or Something new they were trying? I know shortly after that he went to Mayo for their pain managment/clinic....so that might have been why too.


They just started new nerve blocks (for the RSD in his arm) and that lasted 3 days althought the first day was rough - he could not use his arms but he had pain relief for 3 days and they were able to exercise him in PT quite well during that time. They SAY that the next block should last longer? Guess we'll see......