Full recovery from RSD/ CRPS
 

If you have fully recovered from RSD/ CRPS, I would like to hear your story...
How bad did you have it to begin with, and what treatment (medication, PT, OT, etc) did you go through? How long did it take?

Can someone ever totally recover from RSD/ CRPS?

Thanks.

A quick response til I can come back and tell you more. I've had it 15-1/2 years; diagnosed by 5 doctors in FL and NY. Been thru all the stages (hell) and seem to have come out the other end, with, at the moment, minimal issues. I weaned myself off the Neurontin earlier this year. My onset was the result of a massive stroke in '91. So, keep your spirits up and email me if you wish! :-)

Hi Vanessa

(Cute cat you got on the piano!) - We have had so very few people write in saying they've "got through it" that I really wasn't expecting anyone to say "yes" or even "yes-ish".

So, Sage, I'm certain we'd all love to know more about your experience. I'm particularly interested in when you first realized it was seriously lessening. Could you share this with us, do you think? Just love to hear more....
all the best :)

Me too!
 

Yes please Sage - can u tell us your whole experience!! Was it full body etc??!

Thanks
Debbie

The best study about the outcome of RSD and the advanced stages of RSD has been written by Dr. Poplawski from Canada which was published in 1983. He showed that RSD diagnosed in the first 2 years has a chance of successful treatment in 80% of the patients and after two years each year drops the percentage of the success significantly. From Dr Hooshmand's RSD puzzles (puzzle #057~ "The Stages and Outcome of RSD")...

It seems to me that if you are a) young or b) diagnosed early along you will usually recover.

I am young, so I am hopeful that I will recover from RSD. I was just looking for other people's sucess stories, so they could tell me what they did to recover. :)

RSD puzzle#022-
Possible Timelines Of RSD Recovery


"Will RSD always be with you even if you recover from an original injury?

If RSD is treated early and properly, it will not hang around forever. It will definitely improve and in better than 80% of the cases when treated in the first 6 months it completely cleared up. After two years the percentage of success drops precipitously. The main exception is among children and teenagers. In this group there is such a strong recovery power that the prognosis is usually excellent and it is hard to mess them up with improper treatment with these patients the sympathetic dysfunction after successful treatment becomes asymptomatic. On can always pick the abnormalities up on thermography or in occasional cases on bone scan tests in a patient who is otherwise asymptomatic, but these tests show sympathetic dysfunction. The sympathetic dysfunction alone is not the same as RSD (Please see RSD Puzzle #1 "What is RSD").


H.Hooshmand, M.D.

Be sure to check out the whole puzzle list: http://www.rsdrx.com/rsdpuz4.0/001.htm

I'd LOVE to hear your story! :) Thank you.

Have I got a story for you!
 

I have completely recovered from RSD but I guess the question really is, " did I really have RSD or not?" Let me tell you my story and you can comment on what you think about it.

In 2001 I stood up from my chair at work and my left ankle just collapsed under me. This had happened many times in my life since an initial ankle sprain when I was 14. This time the sprain didn't seem that bad- not much bruising, not a huge amount of swelling. I just figured it would get better like my sprained ankles always did.

This time was different. The pain started to spread up the side of my leg. 1st to half-way up to the knee then further up my leg. Within 6 weeks I was diagnosed with RSD and referred to pain management.

I went for 2nd, 3rd, 4th, 5th opinions while getting lumbar blocks and doing everything a "newly diagnosed" rsd patient was supposed to do. All other doctors agreed with the RSD diagnosis. Clear cut case with all the symptoms except never swelling.

4 yrs passes and I keep trying everything I can. HBOT, accupuncture, week long epidurals, ketamine, more drugs than I care to remember, herbology, cranial sacral, applied kineisiology, I can go on and on with what I tried.

I am also being seen by 1 of the big-wig RSD doctors, Dr. Daniel Carr. I have shrunk from 125 to 101lbs and look like hell. The pain has spread up my entire left side including my face, eyelid, nose and ear, left arm and right foot and leg. I am suicidal at times and find great support from my family of RSD friends who post on a forum just like this one.

Then my doctor informs me that he will no longer be seeing patients and is off to teach the world about RSD. I must then find a new doctor. No small task after seeing so many previously over the past yrs.

I go to a new doctor who is recommended by my chiropractor. He believes that my diagnosis of RSD is not right. Doesn't know what it is but says that this doctor friend of his is like a medical detective. So, I go see her.

She tells me that she has had 8 patients in her medical career who were diagnosed with RSD but who had nerve entrapments in their ankles all due to ankle sprains. She thinks I am her 9th patient. This theory is not news to me because I had been telling doctors for years that I had 2 trapped nerves and could name them!

I had trapped my ulnar nerve in my elbow 20 yrs earlier and my pain felt EXACTLY the same just in my ankle not my elbow! I had 4 operations to fix that problem but back then doctors would do "exploratory surgery" where now malpractice is a much bigger deal.

Anyways, her plan was to do nerve blocks on these particular nerves. The EMG I had didn't test these particular nerves so it was negative. She needed to proove to surgeons that these nerves were trapped and needed to be surgically freed.

While I awaited my next appointment, which wasn't for another month, I went to my chiropractor in tears because her exam of my foot made the pain so much worse. I was back on crutches and could not bear any weight at all. Once I told him that the theory was entrapped nerves he said that he could "traction" my foot(move and spread all the bones) and move the tallus bone on top of the foot and few other things. He did not know if this would help of not but it was worth a try. He works for the NE Patriots football team and does this adjustment to the players on the field when their feet get mangled.

Within 10 days of his 10 minutes of work on my foot, ALL of the RSD symptoms disappeared. I awoke on day 11 with that "feeling" gone.

It has taken 2 full years of rehab and intense pt to gain back all the muscle lost to atrophy but I finally have been discharged from medical care and began working again fulltime just 2 weeks ago. I no longer have any pain anywhere in my body. It was a long, frustrating hard road but I made it.

My medical records state that "It is a miracle" but I'm not sure I beleive that. The medical explaination of my rsd symptoms was that because the nerves were trapped, my nervous system became hyperactive which causes the host of rsd symptoms. In a sense, I had a "curable" type 2 RSD. They had thought that I had nerve damage when I really had nerve entrapment that could be fixed. I knew it all along but no one would listen to a mere mortal without an MD!

So that is my story of recovery. I have been put in contact with another woman in Canada who recently had surgery to un-entrap 4-5 nerves in her foot and she too has awoken with the rsd-type pain gone. She's got a long road ahead of her but when she woke up she said the pain was totally different. That is how I felt after my surgeries on my ulnar nerve over 20 yrs ago. There is also many case studies on rsd and nerve entrapments now in 2006 but in 2001-2004 there was nothing out there published.

Questions that I still have:

- did I have RSD or not?
- was it really the chiropractic adjustment or was it a combination of all the therapies I tried?
- did my use of ketamine play any part?
- would my RSD have resolved itself if my chiropractor didn't make those adjustments?
- why didn't all of Boston's Best Doctors figure this out sooner?

That's it in a nutshell. Unfortunately, the forum that I used to post to(braintalk) crashed and does not have all of the hundreds of posts available for you to search thru and read. I was very active and posted alot about all of my experiences with the different alternatives that I tried.

I would be more than happy to answer any of your questions or help you in any way.

I am hoping that if just 1 person recovers because of my story then maybe, just maybe the suffering I endured for so long will be worth it in some strange karmic sort of way.

Peace and HOPE to you. Never give up trying to find YOUR cure.
Lisa

Right on Lisa!
 

That is awesome!
It is really good to hear from you! That is some awesome news, I do remember what you went through, people need to hear your story.

Your right about all that lost information cause it would help alot of people. Im soooo glad your still with us to let people know that sometimes we can be fixed! Dont stop fighting or looking for reasons why we have that pain.

Thank you for still hangin with us :)

Big ole Hug!
Allen

Sage, that is good news to hear that you are doing so well now after such a long time since your rsd began...

I know I would love to hear your story whatever it may be.
It's always good to hear that someone is better and maybe even somewhere down the line some studies will be done on the 'route" the rsd took, then receded down. Maybe a clue to the puzzle of an answer to rsd rests somewhere in the journey you and other who are better have had.

I began browsing after googling stroke and rsd and came across a number of sites. Maybe the others here have seen this one I don't know. And if it has been already posted I don't know. But the site is:

www.nyc.painmedicine.com/RSD_syndromes.htm

I wandered through the site and post it if only because there was a section on infusion therapy (ie. ketamine Iv for one though not the coma) and since it was mentioned somewhere on the board regarding is it a success?, i noted this site says in essence the coma one, if good, is good until a new injury happens to set rsd off again.... there were some other interesting sections as well regarding various chronic pain syndromes.

Wishing you continued wellness....
all the best,
Ina

To Sage,
I do not mean to be rude here, but I feel you could take a minute to share what helped you with this RSD hell.

I personally have had it 5 years. Any hope is really appreciated. Hugs, Roz

To Lisa,
I am so happy for you.:) I hope your day is full of love and joy. Hugs, Roz

Thanks Roz
 

I am a very lucky person to be where I am today.

Believe it or not, while speaking with my dad earlier today, I told him that I was glad that I lived the past 5 yrs in rsd-hell because now I feel like I truly can appreciate and value all the things in life that are really important. Before RSD I didn't really get life. I don't know if that makes sense or not but somehow I feel like a wiser person because of the suffering I endured. I will never forget what it is like to start and end each and every day in the worst agony imaginable. So that every moment that I now don't have that pain is an incredibly wonderful moment in time to be treasured.

If wishes could come true - all of you would awake tomorrow and never feel that pain, never, ever again.

Peace and hope,
Lisa

wow
 

[that makes perfect sense...you never know what you have till you lose it..and lucky you....you got it back!!! wishing you a peaceful holiday..enjoy your painfree days and nights!! moonstar

Lisa, thanks for sharing your story!! I am so happy for you. :) :)

Sage, I would really love to hear your story. Thanks.

I just remembered another person who recovered from rsd
 

I just remembered someone else who recovered. She was a the sister in law of a friend of mine. She was probably in her 40's. Had surgery and didn't recover. Kept going back the doctors with pain. They diagnosed rsd and started blocks and pt and she recovered.

Has had no repalses that I know of.

I'll keep thinking of others who I've met thru the years.

Peace and hope,
Lisa

Hi Vanessa,
The RSD support group letter that had the link to this group also had a link to a great article:
Applied Neurology magazine October 2006 issue
Understanding and Treating Complex Regional Pain Syndrome by Devon Schulyer
http://appneurology.com/showArticle....leId=196513289
The Prognosis at the end was the best part:

PROGNOSIS
Most experts agree that with treatment, most patients can expect their CRPS to improve. "There's a misconception that personal injury lawyers would like to promulgate, which is that CRPS is lifelong and completely disabling," said Harden. With proper treatment, patients could get on with their lives, he said. Because patients go into remission as opposed to being cured, patients need to stay active, engage in physical and occupational therapy, and possibly take medication and continue with other treatments that have helped, he added.
Cruciani estimated that with treatment, about 20% of patients go into remission. "Then you have about 40% to 50% of patients who are stabilized. Although they continue to have pain and are uncomfortable, they can function to a certain degree. Then you have 30% for whom it doesn't matter what you do; they're miserable."
Oaklander pointed out that she never sees geriatric patients with CRPS; the average age of most patients is about 40, and the prevalence decreases as patients age. "These kind of epidemiologic data are consistent with a disease that does not last forever," she said. "It's one of the things that keeps me optimistic."

Check out the article if you haven't already seen it. It closely aligns with my life too, as it does for many and Lisa, GOOD FOR YOU, enjoy!!! ;-> -Sharon

July 22, 06.... i stood up out of bed and had a horrific pain shoot from the middle lower part of my back into my left hip, and down my left leg into my foot.. I then fell down.. Taken to the ER where I had a MRI scan done of the lower body... Found out that I had a ruptured disc in my L5-S1

I have worked as a CNA for 12 yrs... Prior to this incident, I knew I had a herniated disc in my lower back... Had occasions of siatica, but nothing some ibuprofen wouldnt take care of, a trip or two to the chiopractor, and if need be in real bad cases a day of from work here or there.... I should have had it looked into more, but I am a stubborn person and HATE Drs...

The Dr from the ER sent me home with some pain medication, I was off work for about a wk, and was going to a chiopractor... The funny thing was it was not my back hurting, the pain was in my left foot and it was VERY severe... The chipractor really didnt want to touch me, my lower left hand side of my back was swollen, and VERY tense... All she really did for me was an electronic type of massage or something along those lines...

My supervisor at the hospital I work for suggested I go to a Neuro Surgeon to have my back looked at... I scheuled an appt with him, but couldnt get in right away... My foot was swollen, red/purplish, tons of sweating, stinged, burned, could barley walk on it... The pain was so bad, that I could barely sleep... I live in Houton, TX so it gets HOT... July/Aug humid hot, I had to sleep on the couch because I couldnt sleep in the same bed with my boyfriend with him tossing and turning or have a sheet on me... I had to have a fan on in the living rm but the breeze of the fan made me cry....

I seen the Neuro Surgeon, and he said I needed a lumbar laminectomy... I was scheduled for a out patient surgery within a couple of wks.. At the time I seen him he was not concerned about my foot at all... He said I had symptoms of severe siatica from my ruptured disc in my back and that the surgery should help with it...

The morning of my surgery, I was in INTENSE pain with my leg/foot.... In fact the Dr postponed my surgery when he seen my foot... He had a foot Dr and internal mediaction Dr look evaulate me...It was SO bad, that they thought I had a blood clot and ordered a STAT doppler.. Had the doppler and of course it came back negative for a blood clot... Had the surgery, and he found not one ruptured disc, but 3... L3, L4, and L5-S1, along with bone spurs... Sent home, and get this with tylenol with codeine for pain... YAY for me... NOT!!! To follow-up with Dr in a month....

4 days after my surgery, Im at home and going crazy.... NO sleep, in horrible pain... All I could do was cry! I finally called the internal medication Dr that left me his phone #... When I talked to him, I told him my foot was worse than before... He seen me immediatly the next morning, after seeing him he admitted me to the hospital... I was put on IV antibiotic called Vancomycin, and was given morphine for pain, he thought I had cellulitis... I seen a foot Dr, and another internal medicine Dr... The foot Dr said I didnt have a foot problem... The other internal medicine Dr said I did not have cellultis and discontinued the Vancomycin... She said she thought that with all my symptoms and pain levels that I had a nerve disorder called RSD... Although she could not diagnose it but, knew someone that could... I was then seen by a Neuro-Surgeon-Pain Dr... He evaluated me, and indeed said I had RSD.. I was in the hospital for about a wk on IV steriods, Neurontin, blood thinners, vicodine and morphine for pain... Sent home with a wks worth of steriods, Vicodine, Neurontin, and a Ketamine/Lidocaine compound... Also to go to PT for a treatment called Fluidotherapy... I did what the Dr instructed, and was starting to feel better almost immediatly.... Yes of course I still had pain, but ALOT of it subsided, and the swelling went down tremendously!!

Over the next couple of months....Pain would come and go, I had shock like zaps in my foot, pressure in my big toe, tingling, my foot was colder than the other, sweating, bad circulation, discoloration, burning, swelling on and off over time......

My Dr then decided that it was time to start a series of 3 sympathetic nerve blocks... The first one I was numb for about 7-8 hrs, helped ALOT with the pain! The second one I was numb for almost 24 hrs, helped MORE with the pain!! The third one I had done 2 wks ago, I was numb for close to 30 hrs, and had NO pain!!! Seen my Dr for my follow up last Thurs, and he said I am in full remission with my RSD... Although, he still wants me to continue my Neurontin and Lexapro untill I see him in 3 months! :)

I have been pain FREE for the last 2 wks!! I sure hope, and fingers crossed that this continues.... I was diagnosed with my RSD within 1 month of my July 22 incident! I have had RSD for 6 months now... Being told by my DR that I am in remission made my day and then some! I consider myself VERY lucky and fortuante... I am taking my medication, staying active, eating healthy, good sleep ect.....

Thank you to all my Drs that have helped me, I have the upmost respect for all of them, they are wonderful..........As so are ALL of you!!!! Finding this msg board back in Sept last yr was the best thing ever!!! I was able to read posts from ppl and it really helped me alot! Thank you!

Always
-Heidi :)

Wow!
 

Heidi that is incredible, I am so happy for you an readin your post right now just made my day, truley.

Thank you so much for sharing that with us, this is such a positive thread i love it... thank you all.

hugs,
Sandra

That story sounds a lot like my friend's! He went to PT, had blocks and in about a year he recovered! Makes me hopeful!!

Thank you, Lisa!:hug: You are real helpful here!

Your Welcome Vanessa
 

I am honored to be able to spread words of hope to those that are suffering the incredible pain that I remember so well.

As you can see, there are many stories of recovery. It's just that these stories are not documented anywhere. No studies are done to determine what makes people recover. The focus is on the negative not the positive.

My goal is to share the possible. To let people know that no matter what the doctors say, there is still hope for a miraculous recovery.

I pray that you find your miracle.

Peace and hope,
Lisa

I feel like I am about as close to remission as I can get. It's been a long road. It took 3 years to get diagnosed with the TOS and then with the TOS surgery came the RSD. I have also been diagnosed with too many other medical problems to mention. A few years back I had to do a living will for my PCP because at the time he didn't know if I was going to make it and that was after working on my for several years with the RSD and TOS.

For Christmas I ordered him Dr. Hooshmand's book on RSD. I handed it to him and ask him if you would read it and see if he could help me. He started me on meds that were mentioned in it, a lot of them I couldn't take but I was able to take the Methadone.

He started giving me triggerpoint injections in the areas that were the worst and we finally got a lot of them calmed down.

I had 3 blocks before that which had helped a lot and kept having them with my surgeries. I'm beginning to think this pain in my left pelvic/hip area is RSD. It's just such a bad pain that it makes me think it's the RSD. I couldn't have blocks when I had my surgeries in that area because the hospital doesn't have anyone that does them.

A friend of mine had RSD for over 40 some years and I talked her into getting blocks and she called me up and told me she never felt as good as she did after the blocks. I don't buy the story that if you don't get them in the first 6 months they don't work. Mine weren't in the first 6 months and they worked. I honestly hate to hear people say that on here because I believe it is so false.

When I had my last surgery in Nov. one of the Nurses is a friend of mine and she has RSD in her right foot. We talked about how odd it was that she had had TOS surgery years ago and ended up with RSD in her right foot. She told me that everytime it raises it's ugly head she just goes and gets a block. She's on her feet 10 to 12 hours a day. The last time she delt with hers was about 6 years ago.

I have 3 friends that work and have RSD so that is a possibility also.

What I have run up on it that I have too damn many other medical problems to work. I think the TOS makes it the worse for me because of not being able to use my hands and arms. I also deal with back problems so that makes it hard also.

I'm happy with where I am at this point and I am thinking of calling my Anesteologist about getting a block for this pelvic/hip pain.

It's been the hardest road for me since I became sick in 87 but I didn't develop RSD until around 2000.

I believe with RSD you have to find the best Drs. available. I have a good PCP and a good Anesteologist. I could never find a good PM Dr. so that's why I ask my PCP to take care of my RSD.

That's the biggest problem is finding a good Dr. that is willing to help deal with the RSD because of the time and medication it takes to get a person better.

Don't give up on at least getting to the point to where you feel you are ok with it, because you can get there.

Ada

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

I recovered from RSD. Don't lose hope.
 

Hello

I have only just joined this site. I found it a while back when I was looking for something positive about rsd. I have to say most of what I found on the internet was very negative and didn't offer much hope.

I have recovered from rsd in both knees which spread to most of my legs. I could barely walk. I was in constant pain for 9 months.

I am no longer in pain and haven't been for months. I have continued to improve slowly but steadily and am gradually building the muscle strength in my legs back up. I am walking further and further. I can now walk over half an hour before resting. The most number of steps in one day - 16,000.

So you see, there is hope. It was quite a journey to recovery and I learnt a lot along the way. I am thinking of writing a booklet, detailing how I did it. Would anyone be interested?

Please, don't send any negative, voice of doom and gloom replies.

Ness
In sunny England

Hi Ness,
 

Welcome to the forum.

I think any of us would like to know how you got to where you are. Any good info is appreciated to help get others to where you are today.

I am pretty much in remission today from the RSD but it sure hasn't been an easy road. Mine started around 2000 when I had TOS surgery. I actually think though I had it in 98 from falls I had but the surgery just multiplied it.

I went into councelling and was encouraged to walk and pray. My Dr. told me to keep saying to myself as I walked, " God give me strength" and I walked and cried from the pain for years and got good medical care. I can't say these last 10 years have been the hardest because I became sick in 87 but after RSD it seemed my world came to an end.

I have gone back to walking. I have found me some good shoes. I bought some curve sandels from Avon that are fantastic and in the winter I wear New Balance. I still walk and cry at times but I think in the end it's worth it. I believe walking is the lesser of the 2 evils. Walking or strenous PT.

It would be great to hear your story of how you got to where you are and in just 9 months. Wow.

Ada

ADA,
This gal was just a visitor. Who knows when or if she/he will be back to tell us their story.

It was sorta rude to say all that, but to NOT say how she was cured or what they did to become cured in my book. They have to know from all the negative they read on line about RSD how badly people anywhere would love to know how they were cured.

DebbyV

Hi Debby,
 

Sometimes people leave for emergencies or other issues. She may be back and she may not. At any rate, I answered her. At least she knows if she comes back that people are interested in what she has to say.

I hope you are doing better.

Ada

Sorry
 

So sorry - didn't mean to be rude by not replying sooner. This is the first forum I've ever been on and I'm a bit new to it all. I went to the seaside for a few days to Dorset and then my parents have been visiting. I have also been finding it hard to summarise and put into words everything that has happened to me over the last year and a half. It is also hard because part of me just wants to forget about how traumatic it all was and just move on and live my life. I think that is maybe why there are not so many recovery stories around ( I could be wrong). However, I really do want to help if I can and so I am putting together a summary of everything I did to get better and everything I read that was useful (I tried a lot of things and a lot of them helped) and will post this as soon as I have finished it, on this site. I am then going to try writing a booklet with a bit more detail as I feel that this is needed. When I was recovering, I did not find a book written by someone who recovered completely or believed that you could, and believe me I could have done with that. That's why I'm going to try to write one. When I was first diagnosed I was terrified I would never recover and that I would never walk again. In my darkest hours I even told my boyfriend I would commit suicide if I could never walk again. As you know, constant pain can break the strongest of people. Going walking in the countyside was my life, my escape, my freedom. When I was diagnosed with RSD, I lost all that and a lot more.
I know I am extremely lucky to have recovered. Nothing I can say will fully convince you that you too can recover and I do not want to be patronising in any way, but I want to give you the most useful information I can, so please bear with me while I put it all together. In the meantime, please, please , please, get Dr Sarno's book - 'The Minbody Prescription' and give it a try. I'm aware not everyone can accept his theories, but please give it a go. It was recommended to me by my NHS GP, who told me a patient of hers with a Chronic Pain Syndrome similar to mine had tried it after years of pain and she was pain free after working with this book. The book was a part of my recovery too.

Love
Ness

RSD recovery
 

My son developed RSD after a crush injury to his right hand.He was only 18 yrs. old. He was diagnosed about 3 weeks after the injury by a small town family Dr. Of coarse the Ins. wanted a different diagnosis, so they kept sending him to different Drs. Each one diagnosed him with RSD. His hand would swell so much, he developed stretch marks. It would change color from white to blue to purple to red and back again. He could not use his right hand at all, he was in constant pain. His pain management Dr. kept him on Percocet, Oxycotin, Neurontin, anti-depressants, sleeping pills. He could not use his right hand at all, he became totally left-handed. The Ins. Co. sent him to a Pain Management Clinic almost 1000 miles away. We lived in a hotel for 6 weeks. This Clinic did not accomplish anything. We kept asking his pain dr. about HBOT, but Insurance wouldn't pay. My son ended up paying for treatments on his own, they were expensive, but that was the best therapy he had. ( He had all the typical RSD treatments: stellate ganglion blocks (useless), physical and occupational, and pool therapy, psychological help, etc. etc.) After about 25 HBOT treatments, he had to discontinue because of the cost. But his hand ceased the swelling, the color changes, and the pain dramatically decreased. He was able to decrease his pain medications dramatically. His last treatment was a year and a half ago. While he is not totally pain free, he has been off the Oxycotin for quite some time, and only taking Percocet occasionally. His hand looks normal, and he has regained about 95% use of his hand. He is getting ready to go to college now. I am so thankful for his recovery!!!!!!!!!!! I just want to let other RSD patients know that there is HOPE!!!!!!!!!!!!!

entrapment/inpingement or RSD?
 

Hi Lisa,
Your story is very interesting to me. For 10 months my daughter has been in constant pain. x ray and MRI show nothing conclusuive. No bone scan or MRI yet.

She has been to 2 ortho surgeans 3 PT's 2 pediatric orthos and 1 pedatric rehapd doc. She had a previous sprain in 10/06 which she continued to reinjure and irritate until June of 07. It resolved over the summer and all seemed well. In Jan of 08 she was playing in gym landed a little hard on her left foot (not too hard just a little hard) and from that moment on she has been in constant pain.

The constant pain seems to be in the ligaments around her outer ankle bone and in the area of her achilles tendon. It is not burning but it feels like constant pressure and it sometimes sharp. when she points her foot it hurts more and when she flexes it it hurts much much more. She walks slighlty on her toe on that foot, can not plant her heal to the ground without pain and it hurts to bear weight. She gets around on crutches.

Lately she occassionally gets pain high in the inner ankle which is sudden and radiates forward 4 inches. This type on pain, in the inner ankle, she can sometimes, anticipate and "nip it in the bud" by stopping her movement and rubbing the area. This happens when she is trying to put on sock, adjust covers with her feet... He calf is very tight which may complicate the achilles pain.

At first we treated it as a sprained ankle with isolation, ice and pt. Then U of M rehab doc thought is was RSD. But when she didn't respond to one sympotheic nerve block and 400 mg 3 times a day thought it may not be nervey pain. She had botox injections to loosen the calf and help the achilles. She gained a little in flexibility but no pain relief in fact, the pt agrivated the pain to an unbearable level.

The rehab doc wants to consult with the ped ortho doc again. We are scheduled for cortisone injections and an emg in Nov through u of m.

I took her to Cleveland Clinic to another pediatric ortho doc who spent 10 minutes with her and told us she had RSD because her injuries are too global to be structural or soft tissue entrapment. We did not discuss nerve entrapment. He said that the cortisone shots may make the rsd worse. I forgot to ask if the emg could hurt.

My daughter's emg would be on the peroneal and sural nerves. I noticed in your entry that the emg you had did not test the right nerves, you knew which ones they were, and your detective type doctor was planning to do a nerve block on thoses specific nerves. Can you tell me which nerves you suspected were trapped? I want to make sure if she has a painful and exspensive procedure it gives us good info.

We are considering going to Cleveland Clinic for 3 week pain program to treat her for rsd. And we are going to a soft tissue doc next week for an exam and possible nerve flossing. We meet with the U of M pediatric rehap and ortho docs next week as well.

We are so confussed and do not know which way to turn. If it is rsd we have wasted too much time already since chance of remission depends on early treatment and I would hate to put her through the intensive pt at the clinic it her problem is really nerve entrapment that pt won't help ( and could hurt unbearably) until the nerves or soft tissues are released.

For sometime I have suspected nerve entrapment because it was fine one moment and constant pain the next. But, wouldn't that have responded to neurontin and the sympathetic nerve blocks?

I'm hoping Any insight into your experiences may provide clues into hers. I think we also need a "detective Doctor." We are starting to realize that are best info will come from patients that have been through this. Thank you so much for sharing. I'm new to this forum and hope I can figure out how to get your reply.

Thanks again.
One Worried Mom

247Pain,

I am so sorry to hear about everything that your daughter and yourself are going through :hug:. I have RSD in my left leg and right arm, I developed it when I was 12 years old after an ankle sprain, I am now 13.

Like your daughter, I have tried many treatments to try and get rid of some of this pain but nothing seems to help that much. I have been onto 2 intense Physical Therapy programs, the first program helped with my mobility a bit but didn't take any of the pain away and the second one didn't help at all. I am due to return back onto the program in January to have my leg casted, which you are not supposed to do with RSD. The only med that has helped with my pain is Ketamine, which I am now on. It takes my pain down from an 8 and a half out of 10 on the pain scale to a 6 but I get horrible side effects where I feel and act like I am drunk!!

If you or your daughter would like to talk, I am more than happy to help you and tell you my experiences. I know how scary it can be dealing with this illness.

I hope you get some answers soon and Welcome to Neurotalk!!

Alison

Hi Lisa,
Your story is very interesting to me. For 10 months my daughter has been in constant pain. x ray and MRI show nothing conclusuive. She has been to 2 ortho surgeans 3 PT's 2 pediatric orthos and 1 pedatric rehapd doc. She had a previous sprain in 10/06 which she continued to reinjure and irritate until June of 07. it resolved over the summer and all seemed well. In Jan of 08 she was playing in gym landed a little hard on her left foot (not too hard just a little hard) and from that moment on she has been in constant pain. The pain seems to be in the ligaments around her outer ankle bone and in the area of her achilles tendon. It is not burning but it feels like constant pressure and it sometimes sharp. when she points her foot it hurts more and when she flexes it it hurts much much more. she walks slighlty on her toe on that foot and it hurts to bear weight. She gets around on crutches. Lately she occassionally gets pain in the inner ankle which is sudden and radiates forward 4 inches. This type on pain, in the inner ankle, she can sometimes, anticipate and "nip it in the bud" by stopping her movement and rubbing the area. This happens when she is trying to put on sock or moving covers with her feet...

At first we treated it as a sprained ankle with isolation and therapy. Then U of M rehab doc thought is was RSD. But when she didn't respond to one sympotheic nerve block and 400 mg 3 times a day thought it may be something structural and wants to consult with the ped ortho doc again. We are scheduled for cortisone injections and an emg.

I took her to Cleveland Clinic to another pediatric ortho doc who spent 10 minutes with her and told us she had RSD because her injuries are too global to be structural or soft tissue entrapment. We did not discuss nerve entrapment. He said that the cortisone shots may make the rsd worse. I forgot to ask if the emg could hurt.

My daughter's emg would be on the peroneal and sural nerves. I noticed in your entry that the emg you had did not test the right nerves, you knew which ones they were, and your detective type doctor was planning to do a nerve block on thoses specific nerves. Can you tell me which nerves you suspected were trapped? I want to make sure if she has a painful and espensive procedure it gives us good info.

We are considering going to Cleveland Clinic for 3 week pain program to treat her for rsd. And we are going to a soft tissue doc next week for an exam and possible nerve flossing. We meet with the U of M pediatric rehap and ortho docs next week as well.

We are so confussed and do not know which way to turn. If it is rsd we have wasted too much time already since chance of remission depends on early treatment and I would hate to put her through the intensive pt at the clinic it her problem is really nerve entrapment that pt won't help ( and could hurt?) until the nerves or soft tissues are released.

For sometime I have suspected nerve entrapment because it was fine one moment and constant pain the next. But, wouldn't that have responded to neurontin and the sympathetic nerve blocks?

I'm hoping Any insight into your experiences may provide clues into hers. I think we also need a "detective Doctor." We are learning that the best info may come from other atients that have gne through similar experiences. Thanks for sharing.

One very worried MOM

If it's nerve entrapment aka nerve impingement then it wouldn't respond to a block or meds. The only way I know of to relieve the problems from that is to have surgery to release the nerve.

An emg shouldn't hurt. I had one and other than muscle soreness for a couple of days I was ok. The neuro I was seeing did it from lower back to ankles. I see mostly ones that have touch sensitivity find emg's really painful. I'm glad I didn't have it then, just air sensitivity. :-)

If it is something to do with tissues or whatnot then an MRI would show if anything is wrong. A bone scan will show bone changes, if any, but that's the extent of it. Oh it'd also show any healing fractures in the bone. My knee was fractured but had been diagnosed as "only badly bruised". If I'd known it was broken then I sure as heck wouldn't have been walking on it a week and a half later! LOL

Not responding to a sympathetic block doesn't mean you don't have rsd either. From the research I've done not getting relief could mean the pain is independent.

Does your daughter have skin discoloration? Like turning very red or purplish/bluish colors? Does the temp of her skin in the area feel very cold or very hot? Those signs are "usually" at the top of the list with rsd, along with pain, swelling and touch and/or air sensitivity.

I hope the docs can get to the bottom of what's wrong and be able to fix it. Hoping even more she really doesn't have rsd.

Hugs,

Karen