Hi everyone,
I have had RSD over 11 years. It started in my right hand then crossed over to my left hand then down to the right foot then to left foot. Today the doctors say RSD/CRPS wholebody centerlized. I cannot take pain medication and I suffer with low blood pressure and heart problem so almost every medication is out for me. I get Cervical and Lumbar Epidurals and Botox (Myoblock) injections every 11 weeks. This treatment works for me. Without it I have four limb sever flares and I get Kidney involvement, and I experience vomiting and bowel shutdown. Sometimes the pain gets so bad I have pain seizures. Doctors say my pain tolorance is higher then my brains and the brain has a safety switch that goes into siezure when it is toooooo much. So I guess you might say that I am very strong in a sense. Anyway I am new to this forum. I was here in 9/07 but haven't been back until now. I have upcomming heart proceedure in April 2008. Was wondering if anyone has had a heart ablation for WPW. Surgery is very scary with RSD and on the heart I am a bit scared. My service dog is helping me deal with the stress I think he feels it. He is a yellow lab named Hoss and he is also a medical alert dog. Anyway there is my introduction. It is late I better go. Take care all.
Lindecker01

Hi everybody, hope every one is doing well. I had a really FREAK accident and that's why I have RSD. I was having an MRI done. This was a sit down MRI. They have new machines these days. It's confusing but the technician wasn't paying attention to where my feet were, even though he asked me to lift them, and the machine (that was moving me forward) went over the back of my feet and up my achilles tendon. Both feet. My feet got jammed under. Something that will haunt me forever and ever. I got the same RSD diagnoses from the 4 doctor's I've been to. After 2 failed nerve blocks and loads of medication I had a spinal cord stimulator implanted. I had the battery implanted in my butt. It took me 5 miserable weeks to recover from the first surgery. Then a few months later I had it moved up my spine. This was done because the pain had gone up the back of my leg and butt. I felt like entire leg, foot and butt burned, like my skin was on fire. Then a few months after that I had the stimulator taken out since it helped my foot pain but my leg pain continued. My 4th doc thought the stimulator was causing the pain in my leg. Well, he was wrong. I know the newer pain is RSD, it just spread. I realized that after the burning pain in my right foot & achilles tencon came back. It was like a puzzle had been completed. So between the months of Feb - Oct 2006 I had 3 major back surgeries. I'm extremely bitter . I went back to my doctor after the pain came back and he said there's nothing to try you'd done everything there is. I already knew that but it's hard to hear.

Talking about my frustration keeps me in check.

Thanks for listening...........Heather

I am very fortunate to have had my RSD detected early; one month post-injury. I cannot imagine having gone another day without any validation of the severe pain I was in. I felt like my doctors messed up by not finding it sooner so I greatly sympathize with all of you struggling through each day.

I also think it is important to tell some cases of early dx so some who receive early diagnosis aren't scared away from these sites. In this manner, we can call benefit by knowing what worked quickly and spread the word to more friends and doctors. When I first received the diagnosis; I stopped reading a lot of these websites as I got really scared. I still am but know that with my early detection I am in a much different place and thank god for my miracle.

I dislocated a 2nd or middle toe; a little traumatic of an er experience; needle all the way through foot; dr tried to unsuccessfully reset the toe a couple of times w/o bracing and b/4 novacaine set in.... However, heard it eventually pop in and he said I would be driving the next day; sent me home w/o crutches. Well I couldn't walk and the orthos (I saw a few) kept telling me it's a painful injury and come back in Mid March (My accident was on 2/5) Thank goodness for a podiatrist who referred me to a neuro and gave me a script for an MRI. She told me I had classic RSD. My foot had blown up. I couldn't flex or extend it. It was locked in a 90 degree angle. I could not feel or move my toes. It was red and blue if I extended it down. I could only use crutches for 45 seconds. My only experience was a knifing nerve pain that occurred all day and night. I was a wreck. I was taking sleeping pills, pain killers...

Most people were like come on, a dislocated toe, suck it up and get better... I have a friend who said, go to more doctors till someone gets it right b/c this is not right. People kept saying how many drs are you going to go to and my friend said who cares, go to a 100 if you have too. Think of your children, you would do the same for them, do it for yourself.

So I was dx'd on a sat. I went for an MRI on Monday that revealed a neuroma and saw a neurologist that same day who confirmed the RSD. Then on Tuesday I spoke with my podiatrist about the MRI, who said we are not going to worry about the neuroma b/c the real issue is the RSD and that may subside if we treat that first. (Another dr. may have performed surgery on the neuroma; casted me and I would have been another six weeks out b/4 getting a true dx). So I begged and got into a pain managment center (called and called and kept calling till I wore them out to fit me in) on Weds. and insisted on an appt and had an injn to the spine. Get knocked out. If I didn't I would not have been able to lie on my stomach due to the pain in my foot. I still sleep on my back.

My husband thought we should just do a consultation first as he was nervous if the dx was correct and about a spinal injn) I felt confident with the doctors b/c I called every friend and made them call everyone they knew including drs to get the best center for this condition in my area. Fortunately, for me my RSD is sympathetically mediated, meaning after having the block my foot immediately responded and I could move it, flex, extend, wiggle toes slightly, I could feel it. I cried I was so happy after. Then I just went to the closest PT place. Didn't have time to pre-schedule. I begged and said I hadn't walked in 4 wks (the truth) and the dr said PT was critical especially right after the block. I have a wonderful compassionate PT and am now 1 week later walking with a crutch. My foot is still very sensitive, larger, went from a 6 1/2 shoe to an 8 on my left foot. Sneaker feels very heavy. But with a padded shoe I can now one week later stand ony my foot. It is amazing. I am having a block again tomorrow (one week later) and hope with PT to have this in remission. The injection has no steroids or corizone. I don't have the name in front me but it begins with a b.
My doctor truly believes that I will be in remission after this next shot. Of course I will have to be careful. My foot is still tender but it has come an amazing distance. When I say my PT 2 days later; she was amazed at the rapid healing. My foot is getting definition; the coloration is essentially normal; each day I could move another toe. I can small shocks in the foot especially with weight or trying to walk normally but I am optimistic that I can "beat" this enough to live a careful painfree life. But education to all is key. For that reason, I think my story is important, but it does not take away from all the pain that the rest of you have on a daily basis. So I hope that I have not offended anyone and I am not underestimating the power that this condition can harm one.

Clearly knowledge and transmission of these cases is power. I will post a letter that I intend to send to doctors in my area (including of course the ones that I saw). If anyone likes it, feel free to copy it and send it along. If it educates one more doctor maybe one more person will be diagnosed early and have a better chance of a quick recovery and entry into a life of remission.

Good luck to all and may this message empower someone who is pondering whether or not this condition is present or whether they should continue with local injections as opposed to the spine. Ask around for the best doctors; ask the doctors who they like best and then call those doctors to see who they go to or refer patients to in pain managment and anthesiologists.

Lisa

I suppose one of these days I should do a post here.

But I am still in the bitter/denial/ticked off mode about this RSD/CRPS stuff.

I was dx'd by foot surgeon last December. I absolutely hate it.

I have had RSD now for about 7 years. It took 4 years to be diagnosed and the only reason I think I was is because my FP was so aggravated with me he sent me to a pain DR. My Family and friends try but don't really understand the amount of pain especially when I have a "flare up" as I like to call them when the pain is so unbearable I can not even be outside with a light breeze. i have never heard another DR or Nurse or person for that fact that I met that has ever even heard of RSD and its very frustrating.

May God bless you MiePie.
You are so right. Without Gods love we are lost ! May you find peace from your pain and loving support and friends to lighten the way~~~ Im here if you ever need to talk

Hello Everyone,

I'm new here but not new to RSD. I took a minor fall inside my home three years ago that resulted in RSD in my left knee. Unfortunately nobody recognized it at the time and rather than treating the RSD they replaced the knee with an artificial joint. That was BRUTAL!

Have spent the last 2 1/2 years searching for and trying various treatments and went thru 6/7 doctors in that same timespan. I have a spinal cord stimulator that gives me some baseline relief but nowhere near enough to have a decent quality of life. A normal day to me is a 7-8 with pain ranging into the 9/10 levels whenever the barometric pressure drops.

Am still looking for a treatment that will get me down to a 5 - which is where I figure I'd be able to have a reasonable quality of life.

Hi,
A little about me!
I got RSD when I was 15. It started in my right foot/ankle and is now in my right wrist and hand, and I get flare ups in my left leg as well.
I really have nothing else to add to that. I don't know anyone else that has it so it is hard because no one gets it. I have two slamm children (3 and 1) So I have a verry hard time because I can't run after them and really be a great mom.

I just discovered this forum and am so excited about it, I was diagnosed with RSD in my left leg only 4 months ago. It progressed very quickly, I've already had several series of nerve blocks, then had a spinal infusion for two weeks. When things continued to get worse, they admitted me to the hospital and within a week I had a permenant spinal cord stimulator implanted. This has helped with a lot of the base burning pain, however it continues to progress, and I've recently started getting symptoms in my other leg. My doctors have told me they've done all they can for me, so I'm just stuck on a whole cocktail of medications, so I'm completely spaced out most of the time and have been starting to lose hope. Reading on the forum has brought a bit of that hope back, i don't feel quite as alienated and alone as I did... This all came on so quickly, I had no injury that triggered it, just woke up one day and it was there. I've had a pretty hard time adapting to "life with RSD." I was a full time student studying nursing and the proud mom of a very active 7 year old boy when this started. I've since had to drop out of school and my doctor's have told me I might want to start making alternate plans for my life because there is a good chance it may never go away, there's just no was to tell... It's great that there is a place like this, where we can share our stories and concerns. It's gotten so hard to relate to people in "real life" because it's so hard for them to understand where we are...

Hello and welcome to the forum!!!

I am so sorry to hear that you too are dealing with RSD, I have had RSD for 15 months now. I suffer from RSD in my left leg and right arm and developed it after an ankle sprain when I was 12 years old - I am now 13.
If you have any questions please don't hesitate to ask - I will try and help you if I can.

I too am on a lot of medications, these include, Lyrica, Baclofen, Paracetamol, Tramadol, Ibuprofen and something to try and help me sleep. I have also tried Amitriptyline (this caused my vision to go blurry and resulted in a spread of the RSD to my arm), Kenadrin, Pregablin, Morphine, Diazepam, Propranolol, and many more but they dont help me that much either.

I am currently waiting to start an intense PT program and I will start that on the 7th July. The program lasts 3 weeks (possibly longer) and I will have 2 hours of PT in a morning, then tutoring, then dinner and another 2 hours of PT after dinner.

I really hope you are having a "good" day and if you need anything I am here for you. I know how scary it is when you are first diagnosed with something that you don't understand that well

I'm looking forward to chatting to you more
Alison
xxx