Hey all - well here's our story....

My huband suffered a major chemical burn to his leg in 1995 - It was a work related injury. MSDS sheets were not available, he sat with this stuff on his leg for more then 24 hours. We watched the acid literally boil under his skin. It was a horrifying experience. We thought that was the worst of it until about a month later he was diagnosed with RSD. Then the real horror began. He fought for months and years through therapy, blocks, meds with horrible side effects....through lots of work and a pain clinic - a few years ago he was able to "control" the RSD. When I say "control" the RSD I mean he still delt with pain, but the RSD was not controlling him. We started to have a somewhat normal life again after years of suffering.


~ 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 ulnar nerve is 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 (unrelated & 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

He is in physical therapy 3 days a week too and we hope we can put this monster down again.

As far as our family goes, our oldest remembers the past RSD, and now hearing of a new "round", and also dealing with dads ulnar nerve damage has been hard on him - Our youngest 2 did not really experience the early RSD but are trying their best to cope through this new round of medical problems and now RSD. I personally find comfort here and through research. I work (although it scares me some days to leave my husband alone while the kids are in school) for sanity and financial reasons. I come online and here as often as possible. Knowledge is power I say, we WILL find something to tame this beast.

I've commented some before. I'll fill in some details. First though, I want to say I'm so glad to find this site. I've had "the beast" for over 5 yrs but have never met anyone else with it. I'm hoping to get a chance to ask some of you more questions.

I was just leaving work on a Fri evening when a large room divider fell on me, trapping me under it. I'd seen it coming & "blocked it" from hitting my face with my right hand. Thought I'd broken several bones at 1st. Finally someone heard me yelling & pulled it off. My hand/wrist felt sprained, & my neck felt a little sprained. But within a couple of weeks (I kept working) I felt like monsters were attacking my right arm, hand, shoulder & neck.

I was sent to an Orthopedic Hand Specialist, who just shrugged when I showed him my swollen, deep blue hand & asked what it was. Even though my employer was furious that I never go a diagnosis, I kept going to this doctor (maybe I got hit in the head, too! ).

I had a torn ulnar nerve he said, & he put me in a splint & sent me for PT, too. The physical therapist kept saying something was "really wrong" with my shoulder, but the "hand specialist doc" just put off the MRI.

Two yrs later I got an MRI on my own & they found multiple torn ligaments, etc, etc. Fortunately I'd been seeing a Chiro who was GREAT with elbows & shoulders who kept it loose.

After the MRI diagnoses WC switched me to an Orhtopedic who was a "Shoulder Surgery" specialist. I told him I wanted to try injections before surgery & he went along with me (thank God!), because after 2 injections I could barely function due to the pain. I cried at work in the bathroom. That's when they told me I had RSD. Thankfully we didn't go straight for the surgery!

It took about another 8 months before WC would approve me for SGB's. But they worked fantastically when I finally did get them (total of 6).

My injury was in Aug 2001, and in 2002 I started having burning on the bottom of my feet. It slowly moved up my legs. They both now burn to just above my knees. I don't know if this is RSD or not. And, since WC only authorizes my doctors to look at my arms/hands (they've acknowledged it's moved into my left arm too, but not nearly as severe as right), the doctos just sort of change the subject when I ask what the pain is in my feet and legs.

Maybe someone has had a similar experience.

After I went to an Agreed Med Exam last Feb, not knowing 18 months of my medical records were not sent to him, he P&S'd me, so I have had to live on $720 a month "advances" from any settlement. I'm in dire financial straights! I've had to "live" on my credit card, now I can't afford the minimum & was on the phone arranging stuff with them today. But something always works out! I just thought my settlement would come through at least 6 months ago!

I live in a guest house that's just perfect, even though my family are all far, far, away. My landlords are my friends, & let me go without rent a month or two, even though they've had problems. But they just got a notice that their house is in foreclosure!! I feel so bad for them. So I'm trying to arrange to move....somewhere. I have about $75 to pay toward rent these days. So, I shouldn't have any problem, right?

If I didn't hurt so much & feel so tired, I'd dress up & go see if I could find a "Knight in Shining Armor"!!

I love to laugh, that's why I love reading some of the stuff on this site. You funny guys, KEEP IT UP PLEASE!

The way I try to look at it is that my life is kind of an adventure right now! I'm praying & waiting to see what opens up!

Take care all you precious people!

Denise

I am so sorry you are dealing with all that. I got rsd 2 yrs ago following surgery on my thumb. I could not believe how painful it was. I received nerve blocks for a few months and physical therapy. The blocks worked at first, then it stopped working. The pain doctor suggested a Vagus nerve stimulator but another doctor told me I was not a candidate for this. I continued physical therapy with great relief. It all but resolved. I had some residual stiffness, and could not quite close my right hand all the way---but was tolerable. I had surgery on my left hand in March, although I was very worried about rsd, I did fine. It is taking my left hand longer to recover then expected, for some reason. I have cervical dystonia and had my second treatment of botox on July 10th. During these injections he had doubled the botox amount because it wasn't enough last time. He puts most of my shots on my left side---(neck and upper back muscles). This last time he also gave me some shots in my right side of my neck. That evening My right hand started feeling like my rsd was coming back. It was better in a few days, but now hurts when I use it?? does it return? could it of been brought on by my botox shots?? I have it slightly in my left hand, and a get alot of burning in my feet, and a swollen feeling, which comes and goes??? Have you or anyone had a recurrence of symptoms like this?? I also have many other neuro problems, so I am not sure what is what. I have not seen a doctor about these new episodes and I am thinking that I should. I am just soooo tired of going to the doctors for another problem!?? If you or anyone has insight to any of this please let me know. I hope that your situation improves for you sooon. Take good care----hutch

I am sorry for your loss by the way.. Wanted to state that first.. I was working in a nursing home.. Just been there 2 months and a resident got violent.. i got hurt on left hand.. wc put me on light duty for week. went back to nurse practioner and she released me after i told her it was still hurting badly.. went back on christmas day in 08.. what do u expect happens? reinjures the hand.this time it shoots up my arm.. now i have it all the way up in my shoulder and into right shoulder and feels like its moving down right arm.. and my doc says there isnt anymore i can do for you.. i have no pain meds that have ever helped me... I am suffering alone. work comp hasnt paid one dime for my meds.. and on the 1-10 scale i am way over 10 more like 30,,,
i lost my job shortly after my second injury.. 6 months later hubby lost his job.. we are living on my unemployment and 70 bucks a week.. walmart hired me with restrictions,, and now wants to fire me cuz of those restrictions.. so i feel for you.. i really do.. so if u ever need to talk email me and ill give you my number and u can call me or ill call u.. cus i just had to go on antidepressants

I know what you mean about the knight in shining armor! Thank GOD that I can rent a room from a friend or I don't know where I would be? LISAR624

Hi HubbyWith,

That's for sharing your story! What a story!

Isn't it amazing how one time you can "get away" with doing something, & the next time "all hell breaks out" (i.e., your Hubby's 1st surgery was ok)?

Thanks for sharing his meds. Can he sleep when he takes Zanaflex? I've developed severe headaches & neck pain, I thought due to the sprained neck I got at time of injury. But I recently read Dr. Hooshwhatever's info and he said RSD in the arm/shoulder goes up into the back of the head causing occipital headaches. Which is what I have!

Usually my Ortho just had me on Soma, & I can't tell if that works. But when I had a severe headache I went to a PM doc on my own (WC won't cover him anymore - but he's trustworthy so I paid case to see him), and they gave me a Toradol (?) shot, and Zanaflex.

When they got bad again a few months later, my regular Ortho gave me Baclofen, when works just as well as the Zanaflex on my neck spasms, but I can't sleep at all when I take them. I don't remember this problem with the Zanaflex, but I was on a high dose of Lyrica at that time, and I've cut back since I'm not in a severe flare right now.

Also, they don't have me on a anti-flammatory (like Ibruprofen). Maybe I'll ask about it. I don't think my Ortho really knows how to treat RSD. When I hear of something & tell him he seems to be ok with trying it.

Your poor Hubby really must have suffered with that chemical burn! It sounds like a horror movie! I'm so sorry! How old are your kids?

My two sons have both been married for about 20 yrs. I have 5 grandkids. The youngest, Matt 11, is going to have surgery on a lymph node in his arm soon. There's a chance it could be Leukemia. We're praying.

I rarely see my family since RSD. I have to drive with only my left hand, which has of course caused problems in that elbow & shoulder also. I have a special pillow for my right arm to rest on so it doesn't "hang".

How does your hubby drive? Can he at all?? He's a blessed man to have such a caring wife!! You are special!!

Take care,

Denise

Hello everyone,

My boyfriend has had RSD/CRPS for 5 years now. Recently it has spread and mde his pain worse where he is unble to work and travel for longer that 30 minutes.

He is prescribed:
Percocet 5 ml 3 times a day
Lyrica was 75ml 2x a day but now it will be 100 ml 3 x
Soma, didn't work so he's off that
Physical Therapy was 3 x a week but they determined it wasn't working and discharged him.

I am trying to be supportive and beleive me it is the hardest thing in the world that I have been given to tackle. I am doing what I can but the most frustrting part came today when the doctor wouldn't listen to him. I was right there in the room with them and the doctor ignored everything my BF was telling him.

I found a great website I am working with to raise research funds. I just need to hear from others with and without RSD and how I can be a better supporter.

Thank you.

Hi Quackingmoose and Welcome to Neurotalk - it is great to have you here and you will meet many great people who I am sure will be more than happy to help you in anyway they possibly can!!!

I'm SO sorry to hear that your BF suffers from RSD also! I really hope that things start getting better for him real soon and you are both in my thoughts.

I also suffer from RSD. It currently affects both arms and my left leg. I developed it when I was just 12 years old after I fell and sprained my ankle and am now 14. I have tried all sorts of medications and procedures and none have really worked that well for me. I am now on Ketamine as a last resort but my doctor doesn't like me taking it as he feels it could mess up my hormones because of my age etc.

I cant imagine how hard it must be for you as a Caregiver to have to watch your BF go through all of this and not be able to help and make him better - it must be the hardest thing in the World ! My mum is my caregiver and I honestly dont know what I would do without her, she has helped me through a lot of the rough times and has been the only person in my family that has really supported me 100% through all of this. She posts on the forum sometimes when I am unable to so if you would like me to get her to PM you, please let me know as i'm sure she will be happy to as she understands a lot of the things you are having to deal with as well!!!!

I give you a lot of credit for sticking by your BF and trying to support him - I know its hard and it takes a strong person to do that!! Please dont ever be afraid to let your emotions out - I think sometimes people forget that RSD affects the whole family, not just the person suffering and it's important that you vent all of your feelings. We have a Caregivers section on the forum so please feel free to post there should you wish as it's important that YOU get support also!!!!

I'm sorry to hear that PT isn't working for your BF. I can relate. PT didn't help me at first, then it started helping a bit and I was able to walk where as before I was wheelchair bound but didn't cure the pain and it isn't workling at all for me now. We are looking at other options to try as a last resort and I think we will probably try Botox as I have severe Dystonia's (movement disorder). Please tell your BF to keep moving as much as possible though - I KNOW it is really painful, trust me, I do but it is probably the one thing that will help in the long run - even if it doesn't feel like it now!!! My Doctor always says that we either have to use our RSD limbs as much as possible or loose them and it's true!!!!

I have been on Lyrica also. I didn't help me and I put about 25lbs on whilst on it so eventually, we decided that it was best if I come off it. I really hope that it helps your BF and that he gets some much needed pain relief!!! Everyone is different when it comes to dealing with this condition so it makes it hard for doctors to determine what will work and what wont unfortunately.

Take care and I hope to see you around the forum more soon!!! If you need anything, please dont be afraid to ask because I DO understand some of what you are going through unfortunately!!

I hope things start getting better for you soon and please dont give up hope!

Alison

Hello everyone. I have used this site a little and wanted to introduce myself. I used hopeful as my user name because I refused to give up hope that someone will find a way to cure this disease. My CRSD started after a fall on the ice. I thought that my arm would hurt more if it was broken, so I did not get it checked. After 6 months a Dr. at work, I was a surgical RN, did a X-ray of my Left wrist. It was broken but healed. So I started to see him at his office. We tried to figure out why my arm was in so much pain, more than when it was broken. My arm did freeze up on me, so I had 3 different surgeries to get my movement back. Then my Dr. went on a convention about pain, to try and help me, that is where he heard of RSD. He was 98% sure that was what I had and sent me to a pain clinic. I was diagnosed with RSD in1998 about two and half years after this started. I went through most of the greiving period and now I am trying to do as much as I can. I do have many days that I still grieve my lost, however I have tried to look at the postive, and remember that there are many more people worst then me. Today was a really bad day of pain so I in my "pain room" so I have time to write this. I wanted to thank everyone who has posted on this site it has all ready help me. Hopeful

Hi, I was just diagnosed today with "mild" crds. I had torn a ligament in my hand at wk back in Dec. After 6 wks in a cast and the rest of this time in a splint, pain worse and spread to my whole hand from just my thumb. It feels like my hand is being ripped apart and it burns. This is mild?! Anyway, I have some swelling, a bit of color chaange (red w/white lacey pattern sometimes) sometimes it is colder than my other hand but not always. The pain is worse when I try to move or use it and it's constant. I can't think, concentrate, sleep, i am irritable etc. I bet my kids are ready to run away . I am in OT and it seems to help. This is under wc. Anyway, pain magmt doc gave me a creme for my hand and ultram but suggested nerve blocks, especially if no improvement in function in the next 2 wks. I was just so stunned today, i am on an emotional roller coaster I couldn't even think of questions to ask.

The wc nurse case mgr says that if meds don't wk we'll do nerve blocks and that will cure it...is that true? I feel like i am losing my mind.