Hi I have known in 38 years
 

Hi I have had RSD dx ed in 1968 right before I turned 14 1700 pounds of can lids fell on me at 7up Bottling Company my bfoot was first then it went up my leg ,later I was shot etc my RSD is everywhere ,I don't think there is one thing I didnt try I was a RN after being a Corpsman . I am sure I have met over 400 RSDers in person over 2000 online starting with the www Newsgroups "RSD" ,Peripheral Neuropathy is a very painful condition that in ways can be much like RSD ,I knew a woman who was getting pregnant and said she would stop taking meds and beat RSD she claimed she did though I begged her for oine page from her chart saying she had RSD and beat it . If RSD isnt caught in the First Year or I heard someone say 2 years I can agree with that .
One time an Anesthesiologist gave an RSDer an Epidural and the Anesthetist said he put her "angry nerves back to sleep ,I have had over 75 SGB and Epidural blocks I got a couple hours of releif after . The one cure facilitated Anesthesiologists to be the Pain Management Doctors (What a racket )
I empirically believe I have seen 3 people beat RSD and a couple beat it and got it back again years later (Heartbreaking)
Definitely younger and catching the RSD or whatever is causing the pain can beat RSD or Peripheral; Neuropathy go to a Neurosurgeon that knows RSD not an Anesthesiologist or Neuroligist though the Neurosurgeon will want you to see them ,a Neurosurgeon is one of the most respected Doctors ,I know this friom when I was a RN . I wou;ld love to see this Thread opemn and hear and see that someone beats RSD I have seen the few I mebntioned and 4 even offered their chart with proof they beat it .I have seen so many Doctors and taken Medical Class in Pain control I pray I see you as one of the people who beat it ,if you are a woman check out "For Grace" she has some funding though she hates men she does have a "Womenm against RSD with some funding . We need to get RSD known and it is in the news more and more I know a man who is a Pathologist at the NIH (National Institute of Health) look up RSD from N.I.N.D.S ,I think if we get people who never heard if RSD together we can beat it ALL OF US , I have lost too many friends who took their own lives , Google "RSD Suicide" sometime but thats the harsh side I do believe RSD may be beaten in our time ,they can get Stem Cells from skin now , I believe
Gentle Hug

To RSDNO,
I am glad you know a Pathologist, is he any good by the way? What does he think got into are nerves to be like this. Isn't are nervious system supposed to be highly protected? Hugs, Roz

I was 14 when diagnosed with RSD. I'm 15 now. I was a gymnast and in the gym 24 hours a week. I was tumbling and broke my right foot in June of 2006and I was healing okay. I got out of the cast and got one of those boot things to wear. I managed to get off of the crutches, but I was starting to feel bad pains in my right foot so I still used the boot. The pain started becoming more intense to where I went back to crutches. Then that October after many tests, I was dx with RSD. I did lots of research because when I asked the doctor what that was and if it could be cured, he just looked away. After reading up on it, I was devastated. Shortly after that, I was wheelchair bound because it spread to the other leg too. That December, I had a lumbar nerve block done with little success. In fact, it made the pain even more intense in both legs. They didn't do anymore nerve blocks. I went to therapy with little success because they didn't know much about RSD. Then about a month ago, the RSD pain in my arms hit me hard and I couldn't really do anything anymore. It had been spreading to my arms since early January, but I didn't tell because I didn't want to believe that it was really the RSD and I didn't want to seem weak and like a big compainer saying that my arms hurt too. Thankfully, it started out not so intense in my arms but it became too much and intensified greatly to where I would lay in bed during intense flare ups crying for hours because of the pain and how I had lost my mobility and freedom. I went from being a very active teenage gymnast to a teenager who couldn't walk or do anything on her own without great pain. It was devastating for me and especially my mom, teachers, and friends (still going to school despite everything). I have 3 very understanding teachers that helped me out when needed. Then I had 1 really severe and one less sever allergic reaction setbacks too that almost cost me my feet.

I recently began a program at a local rehab center. They had a patient a couple months before I did and she had RSD also. She was an 11 year old dancer. She went to the clinic in Pennsylvania and they told her that it would be easier with the intense therapy hours to do the program closer to her. They got a dvd on the treatment stuff and brought it to this place and asked if they could do it. They said yes and the girl is able to walk and rollerskate and dance a little bit too. I have just completed my 7th day of intense therapy like she did. I learned how to walk on my 5th day. It was a miracle because I hadn't walked since like August or September. The therapy hurts really bad but it really helps in the long run. It is stressing because you see your therapist helping others and their mission is to help you without causing pain. When the patient says ouch, the therapist stops immediatly and they help them with as little pain as possible. Unfortunatly, the only way to help treat the RSD is to cause as much pain as possible. I can yell and scream and cry, but they don't ease up on the stuff, they just do it harder. They always say "No pain, no gain." I'm kinda sick of that saying now. I have to complete 4 intense weeks of therapy (monday to friday from 8:15 to 2:45). After that, I have to go afterschool 3 days a week for another month, then they wean it down to 2then 1 then once a month then maybe more or maybe done.

I'll let you guys know how it all goes. They have high hopes for me to be almost normal again :)

Thank you so much for sharing!

My Dr. and physical therapists say that all the therapy I am doing will help me in the long run, so I am HOPING a ton, too! Even though there "is no cure", teenagers do recover sometimes!! :BeamUp:

My therapist always reminds me why he is doing what he is, and he has even told me how bad he feels that he has to, and that I am hurting so bad. I tell him that I know, and he knows that this is just what we HAVE to do right now!

I know what you mean about the screaming and crying- the other patients sometimes look at me like I am crazy, and they don't realize what is wrong (I have tried explaining to some, but they are just so confused). :o

Hoping and praying! You're in my thoughts! :hug:

Doesn't matter

congratulations
 

Hey girl, congratulations on your sucess and that you are pain free. I hope you don't mind if I ask you a couple of questions. You said your still not sure if you actually had RSD. I was wondering if the pain was the major symptom- or if you had other probelms as well. I had very severe rsd that has spread from my right oleg, to the left, and the left hand. The only thing is I have other major symptoms- it is not just objctive pain. My legs change color so much you might as well be watching an art show, they swell, especially my right one, in strange patterns, and I have dystonia, autonomic problems- and deformities in my limb. It is only my opinion- but I believe that real real rsd will come along with othber symptoms as well. I feel like if you didn't experience any other symptoms besides just pain- it should be questionable whether you had actual rsd or not. I am glad you are doing well and pain free. That's a miracle and a blessing. What other problems and complications did you have from it at the time?

ps. My background is in kinesiology and nutrition and I worked in the health in fitness industry in patient recovery for years before getting rsd, so suprisingly I am very knowledgable and informed about anatomy, physiology and health in general despite my condition- in fact I think that is why I've been able to deal with it so well.

Hello there,

I think that RSD/CRPS comes in so many shapes and sizes it is very hard to establish whether you really have it or not if depending on having the whole gamut of symptoms.
I have a friend whose only symptom is pain, she has NO colour changes now, no deformity, no dystonia---just pain.
When she was diagnosed however she did have swelling, sweating and colour changes. Her diagnosis was made on the strength of that.

Unfortunately a forum for people with RSD/CRPS is not going to be the place where there will be much response from people whom have got better.
They have no need to visit sites like this and often feel it is the last place they want to go.
This makes it very hard to establish the true statistics. I trust the members of my medical team to tell me the truth about their successes and have lost contact with many people who attended my pain group who have got better.
Cheers and luck
Tayla:hug:

LisaShea;

Did it feel like your "RSD" went away as frequently as ten or fifteen times a day? ...then when it came back it was as strong as ever and felt like it would never quit.

I keep thinking (or trying not to) that I have a neuroma. The MRI is inconclusive according to the docs but they seem to seriously doubt it.

No, mine didn't go away - it was relentless. The pain was helped with inpatient, week-long epidurals but the relief was never for very long. Other things like accupuncture helped; HBOT helped; other things helped but always came back. Not just the pain but all of the symptoms: discoloration, temperature changes - my left leg was 10 degrees colder than my right, my leg would get molted( the blood would pool in a strange red and white blothiness), atrophy, muscle cramps in my foot( tiny muscles), my toes would spasm and dance, my legs looked really bad.

Neuromas do cause nerve entrapment and impingement so you may be on to something with yourself. Maybe the neuroma is the cause of your symptoms. Maybe there is a way to get rid of the neuroma?

Hope to you,
Lisa

Thanks for the well wishes.

Yes, I had all the autonomic problems - almost everything on the checklist except for swelling. In fact, the initial ankle sprain never caused much swelling at all.

The explaination was that the nerve entrapment cause my entire nervous system to become hyperactive. This caused a rippling effect of neurological symptoms throughout my body - the same symptoms as RSD. In fact, lightning storms would make my body go into twitches and jolts! It was very painful to experience and I looked bizarre.

I too am very medical and this explaination does make alot of sense - it is logical. My entire system was thrown out of balance.

Hope,
Lisa