Hello everyone, I am glad to have found a place for some answers (I hope). I have been battling severe chronic pain for five years now. Had every diagnosis told to me, then taken back you could think of, so you could understand my skeptisism in my diagnosis. I have read there is no definite diagnostic tool for RSD is this true? I ask because my story is so different then those above. While my pain is unmanageable, I do not have the "black&blue skin" nor did it seem to have started with a specific injury then spread. First I had horrible pain in the hip, no reason, just all the sudden couldn't bear weight. I had to wait a bit to go to docs (no insurance)all tests clear, then the pain started in the long bones (all right side) and the pain when I would get home from work would drive me to tears, you could actually see the throbbing in my right ankle. I haven't been able to work for two years now. Time has seemed at a standstill and all mushed together but either way, this pain has consummed my whole body now. I did fracture vertabrae in l-5 in a car accident but that was when I was far younger, then broke my tailbone and cracked the sacrililiac joint(sp?) due to the pain in my hip, sent me reeling down the stairs one day. When one seems to get a different diagnosis every year, not only do family members start thinking its all in your head, but sometimes I wonder myself. I know my pain is real, but I can see why people would think something fishy. The pain levels have now gotten to the point where normal "hermit" living isn't even doable anymore. When I first stopped working there was somewhat of an improvement, then a sympathetic doctor put me on some pain meds, at the time my dianosis was RA and FM. That helped take the edge off enough to allow me to walk up to store and back, which kept my joints moving, and care of the house. Now the pain is so out of control don't know much what to do. I started seeing a new family doctor very organized and up to date (old doctor told me I had "grown back my tonsils" when I had a couple growths on tongue/cheek, and asked him about them, when he siad tonsils, I said I had them removed at 23, lol let alone tonsils aren't on the inside of your cheek!lol. That was the last staw and sought this new doctor. Anyway after going over my records and taking an extensive history, I mean he mus have stayed with me a good hour! He started telling me about RSD and how he believes I have it but no way to tell for sure. Sorry so long and disorganized anyone out there have the same experience?

You sound a little like my daugther. She is 18 yrs old and it took me ten years and so many doctors to get a diagnoses.
One doctor said it was all in her head and one diagnosed her with FM without even turning around to look at her. All we had to say was she hurts all over, so that meant it had to be FM. I finally went to a FM specialist (he wrote the book FM for dummies). He said it was not FM but it was RSD. My daugther does not have what you would call a text book case. That is why it was hard to confirm. There are not test to confirm the RSD. Just that she tested normal on all over disorders. We are not sure what caused the RSD to start. It started slowly in her legs. The pain was not consistent at first. Then over time it spread to her arms, both legs and back, even face and the bottom of her feet at times. But still not a consistent pain. The skin sensitivity was everywhere.
Just last week she had her 1st ketamine infusion treatment. 3 day of high dose ketamine. It was rough but the sensitivity is down 80% and pain down 60%. Dont know how long it will last but the relief is wonderful. In her case she has had the pain for so long that the brain is having trouble understanding what normal sensations are. She is having to learn what normal touch and normal pains are. There is a good chance she will need another treatment (very expensive)but I will do what ever it takes to help her. I hope you will find some treatment to make life better. God Bless

Hi. I'm a new member and about to tell my life story. Hang on for the ride.
In Spring 2000 I fell at work knocked unconscious and when I awoke both shoes were off my feet due to the impact. I was rushed to the hospital and thankfully nothing was broken. Only a HUGE bruise on my entire thigh. Off work for a week. Within 2 weeks I felt electric like shocks in my ankle/thigh areas. Assumed it was just a result of the fall so I ignored it. 6 weeks later went to an ortho who promptly casted the leg due to soft tissue damage that was left undetected at the hospital.
6 weeks later cast was removed, still complaints of electric shock feeling and the leg was reddish. The doc then mumbled something about hoping I didn't have RSD. Returned to work.
4 months later still having the electric shocks, swelling etc so WC authorized an MRI showing the peroneal nerve by the knee was crushed. Off to a nerve guy in the city who recommended nerve surgery on the peroneal nerve and the femoral cutaneous nerve (which was also crushed). At this point the pain was almost unbearable. WC refused to authorize the surgery until a year had passed from the onset of the injury. The surgeon told my husband he did not feel the surgery was going to work after he got in there and saw the damage. He also said because the insurance company procrastinated the chances of nerve regrowth diminishes greatly after 1 yr from the injury.

FF to 27 doctors and IMEs. It's been a freaking nightmare. The RSD/CRPS has spread to include my back and the right side of my body. The redness has not gotten worse but I tore the meniscus in my knee requiring surgery in March 2010 and that has now worsened. I need a total knee replacment but they won't do it because of the CRPS. I'm left with drop foot and the sciatica is now damaged due to the crushed/severed peroneal nerve.
Sent to ankle specialist who couldn't believe I was still standing because as he put it, "there's nothing left in the ankle to perform surgery less much else".

They tried lumbar injections however I was the 1% that was left with temporary paralysis in my right leg so they put a halt to those. SCS is out of the question. I am anaphylatic to narcotic pain meds so that leaves me with Toradol (glorifed Excedrin as I call it).
I long for my old life and I'm now in pain counseling trying to deal with this mess. Add in Worker's Compensation and their games and it only makes it worse. I am thankful to have a drop foot brace and a back brace on the days I can stand them. I have a cane and a wheelchair but at this point I fight them every step of the way.
The pain can be unbearable but I'm working on it. Sometimes when it's so bad and someone touches me it feels as if they're bruising me and most days the right side feels like it's on fire. Does anyone else have that kind of pain with RSD?

Hi all: I have been battling RSD/CRPS since 1998. My right foot and leg are constantly swollen, and shinny, and painful. I use compression hose when out and about to try and keep the edema down some.

I take tylenol or aspirin or aleve for pain, and if the pain gets to severe, I see the doctor to get a perscription for a few days.

Walking is difficult most of the time, and I use cane. On the days that my leg is nearly normal, I rejoice for the good days which are far and few between.

Even though I am not RSD Dxed, I have a thought for you regarding one whose Dx says RSD while she shows no outward symptoms. Her name on here is Rrae, and you can search her and visit her profile page, then leave a message for her there, and she will most assuredly be in touch with you. She is a survivor, a fighter, a humorist extraordinaire and a woman of deep and abiding faith that has helped her deal with the ups and downs. I will mention you to her as well!

Prayin for you,
Mark56ZZ

Hey Everyone,

Im Nigel from Malta, turning 21 this month and have a good chance im suffering from RSD and have been for the past 5 months, still without a clear diagnosis.

After doing research for over 5 months, I came across this forum last night and after reading many of your interesting stories, I believe that I have found the right place to get as much honest feedback and opinions as possible.

My Story:

April 2009:

Basically to cut a long story short, I underwent an ACL & meniscus reconstruction successfully 2 years ago after a fall from football. Although did not do the best rehab, I got back to a VERY active life - gym 5 times a week, work and heavy fishing without any trouble besides feeling my knee tired due to it being weak.

November 2010 (Injury):

Back in November I suffered a 2 day period of strong overuse of my knee and kept on pushing on it when my body told me to stop. Since those 2 days, my knee would always feel exhausted and swell from normal day to day activities like walking and driving. As time went by I developed a thin pain behind my knee which felt unusual. From the time of the injury till mid January I was always able to control the pain - as in I would rest and feel no pan sitting down for a few days then would be able to walk a little and the pain almost went completely for a few days. In fact a month later and actually went to the gym (upper body, no cardio) and drove without any pain, however deep down I knew it was still there but just much more manageable with every day activities. Crutches were used on and off.

(nb - The only position I would be pain free/rest would be sitting down with my knees bent at 90 degrees. Lying or elevating would feel uncomfortable and aggravate the pain)

December 2010 (Progress and setbacks):

I then strained my knee again in December by walking for 40min (was the stupidest thing I have done) and the same pain behind the knee came back, slightly worse than the first time. I then continued the rest period with small intervals of driving and fishing which aggravated the pain but up until mid January, the pain was in my hands and was able to control it even though I wasn’t living much of a life and missing a lot of work. Sleep was also never a problem. Crutches were also on and off.

January 2011 (Increase in pain):

The first 2 weeks of January were very similar to December, kept on resting the whole day and would make an effort to go to work (office work). Also went fishing on the weekends but would suffer afterwards. Around mid January things started to get quite bad and out of hand. The pain started to increase quickly behind the knee when out of a sitting position. The pain also started to develop into a shooting pain behind the knee like a tingling shock when lying down or moving round the house. Defiantly felt like a nerve pain. At this point it became difficult to sleep as laying down trigger the pain. I decided to stop all activity at this point and just do whatever it took to control the pain (sit down as much as possible and keep out of pain) and avoid going out of the house, fishing etc. Did this for 2 weeks and did feel an improvement and my sleep did improve and was able to walk more round the house with less pain. I felt as though the 'injury' was coming back into my own hands again but very very slowly.

February 2011 (Knee Arthroscopy):

On the 2nd February I underwent a knee arthroscopy although I was not for it however my parents though it was the best option. The surgeon found nothing wrong and just did a basic clean up of my previous ACL reconstruction, removing scare tissue and come minor cartilage etc... He claimed that the ACL reconstruction was in great shape also.

Things got very ugly after the arthroscopy, my pain had got much worse and I was not able to control it as i had to keep my knee straight for a week. I also had to force myself to do certain exercises afterwards as I lost even more muscle. I was getting very scary pain reactions at night and sleep was difficult. I also started to shake (like small seizures) in the first week afterwards and was taken to hospital 3 times in 10 days due to abnormal pain with nothing that relieved it, tramadol too. The pain also made my cry for the first time in a century. (The day after I ruptured my ACL and split my meniscus at collage, I was told it was just a sprain and had to walk up 4 stories of stairs to my room and lessons, shower etc frequently through the day and was not allowed to use crutches. So I know what ‘pain’ is and am strong in fighting it). This pain was not a pain I could muscle through or fight through. The more you try and fight it, the more it would fight you. My surgeon was also out of answer at this point and couldn’t explain my pain and advised me to fight through and continue with the exercises and stretching.

After 10 days from the OP I was able to start sitting down and bending my knee close to 90 degrees again with hope that the pain will disappear and subside like it did post OP. Unfortunately this was not the case however the pain did improve in this position.
I also took a decision to stop my exercises and get back to the rest phase and try to improve like I was before the OP. After around 1 week of complete rest and no exercises, the pain calmed down again and was able to sleep much better and was also able to walk round the house without crutches slowly a few times a day.

March 2011 (Roller Coaster):

During this month, I was doing my utmost to keep out of pain and stuck to my plan of complete rest. This was very difficult as during this ‘rest’ period I was constantly visiting a number of specialists (around 10 in all including physio therapists etc). I was also doing a number of painful tests. I was also being pressured into moving as much as possible by my family and also did some aqua therapy. The build up of all the tests, doctors’ examinations and aqua therapy got me into a bad state again and back onto the crutches with many sleepless nights. So much for my ‘rest’ period!

April 2011 (Physio Therapy…hospital)

After all the specialists I visited, they all told me that it was down to physio and that my muscle wastage was the problem. My parents also though this was the problem. Although I knew this was no muscle pain, I had no way out at this point as the rest was no longer working and just had to believe again that the PT would get me out.

We therefore decided to go to a Fifa PT clinic in Rome. I was put on an aggressive program of 2 sessions a day – aqua in the morning and gym in the evening (total of 4 hours a day). I decided to give it my all although the pain was indescribable but I was out of options to what else I could do. I followed the program for 3 weeks, increasing intensity everyday and the doctors and physios were all pleased with my progress although I was constantly complaining of sever pain and something not feeling normal in my knee. I was also experiencing many strange symptoms, especially at night. The doctors kept reassuring me that there is no reason to worry and its all normal and that soon I will be out of pain etc etc. This got me very frustrated as it was clear it wasn’t normal and that the pain increasing was not a good sign.

After 3 weeks of physio it was physically impossible to continue and the pain had changed into a devil inside me knee. I was then taken to hospital as I was not able to sleep for 4 days and the pain also travelled into my left hand causing my fingers to cramp up. I was examined by a team of expert and did every single test there, including full body MRI, EMG, blood tests, brain tests etc etc. Everything resulted normal. All they found were muscle inflammations behind my knee on the inside hamstring and calf muscle (7 cm in all). They also found a smaller inflammation on my left knee however they concluded that these inflammations were not the cause of all this horrific pain. The doctors are still working on my case and are suspecting it’s some kind of pain syndrome.

Current Situation:

Currently im stuck in a flat in Rome with my mother and have been put on a pain medication program by a top pain specialist including Lyrica, Amytriptalin, Oxycodine, Cortisone steroids, Paracetamol and Xanax. Although the medication combined with complete rest have calmed me down more, the sever pain and symptoms are still persisting after 10 days on them and it’s a constant struggle for me and my mother hear in the flat as we are both looking for answers from any direction as to what we should be the ‘plan’.

Symptoms:

• Burning pain behind knee, travelling down to feet. Increases severely when knee is straightened.
• Sting pain behind knee, travelling down to ankle.
• Shooting electric pain.
• Feet feel like they are on fire and change temperature cold and hot abnormally.
• Feet change colour and get red and purplish with motty patches. (Goes when elevated). Lately my feet have started to get more redish and dry and hot throughout the day compared to cold white and sweaty in the previous weeks.
• Veins in foot inflame and throb and feel pressured – leading to heating up my toes.
• Intense muscle spasms which build up into crap in my calf going down to my toes.
• Irregular hear beat.
• Sometimes I describe my blood feeling like acid passing through my vains.

My symptoms have started to build up very slowly since January, only experiencing burning, heating of the feet, colour change etc a few time at night every now and again. Since the PT these symptoms have started to creep up more often and even throughout the day not just at night. Currently my symptoms are being experience constantly 24/7 and keep growing on me as time passes.

We are very aware of RSD and although no doctor has clearly indicated that I have it, there is a very good chance that I have it. My main worry is that I have been just over 5 months now and passed through a lot which have aggravated my pain and symptoms and feel like im hanging on the wrong side of the fence with time not on my side if it’s RSD.

Im just looking in every direction at the moment for answers and advice as to what I should if it’s RSD as I don’t want it to get too late since treatment in the first 6 months is critical.

Thanks all for reading and willing to listen to any advice and or precautions I should take at this stage to make sure I do my utmost in trying to have the best chance for remission in RSD.

Thanks a lot,

Nigel

I realize that this response comes many years after the question was asked but YES, RSD can and does (for many) spread. Drs. Robert Swartzman and Anthony Kirkpatrick (you can search for them online) can most likely provide you with written studies proving this. Dr. Swartzman is in PN and Dr. Kirkpatrick is in FL. Sometimes the disease never spreads (lucky folks) and others may not spread for years...others (like me) have very rapid spreading of this demonic disease. Mine began in Feb '09 and was full body by Dec '09. I was hospitalized in April of '10 with internal bleeding associated with the RSD.

Good luck,
Kathy

I am 16 years old and I was diagnosed in March with CRPS only after one month of the initial pain. They still aren't sure of what caused the pain in my arm but already 3 months late I am a lot better then before.
However due to this two other medical problems have come up so I am having to deal with that and school work.

But for right now I am really just wanting a place to talk to people who understand the pain and everything I am going through. While I know my parents and friends love me and know something is wrong the second hardest part of all this is the loneliness.

Hello everyone: I have had 7 breaks and countless sprains since the age of 19; at age 35 the ankle would no longer support my body weight, the pain was excruciating and falling down stairs seemed to be my new past time. This is what triggered me to seek out medical attention from the VA. It was discovered the ankle was in pretty bad shape and was in need of a total reconstructive surgery. When recovery was finished and rehab began I noticed that the ankle did not feel quite right. It seemed to always be cold, stiff and painful. When I brought these symptoms up to the doctor, his response was “it’s all in your head” This was in 2008.

By 2009 a podiatrist came into the picture and determined another surgery was necessary to fix my symptoms. X-rays showed osteoarthritis was present. By this time I had lost my job and was losing my home. I moved out of state and took up residence with my parents.

6 months later I am back at the VA, this time a fusion of the Right ankle is necessary, no more maintenance surgeries. Approximately 3 months after the fusion the foot become very angry and turns a bluish/deep burgundy color, it felt like an ice cube. This is when the Doctor’s got a clue. An EMG was ordered and a never conductor test; Results: severe nerve and muscle damage; Diagnosis: CRPS/RSD (go figure) Next step pain management.

1. We began this step with aggressive sympathetic nerve blocks (every two weeks) FAILED.

2. Directly Blocking the nerve (every three weeks) FAILED.

3. Now a Spinal Cord Stimulator is desired, unfortunately the VA’s standard rule is: any elective surgery the patient must have a mental health evaluation and the Physiologist must approve the procedure. FAILED

Reason: The mental health department does not believe that I understand my situation to the full extent and because of depression in the past (which I believe all who live with chronic pain become depressed) the worry is that I will spiral downhill if this final step (SCS) does not work.

Requirements for Approval: I must begin individual therapy and join group therapy for RSD sufferer’s so I can get a better understanding of my situation.

When I first heard this news I was very angry; how dare they deny me the right to try; then tell I don’t understand my situation. However, after reading through some of your posts it has occurred to me that I am completely in the dark about this disease. I had no clue, and I don’t believe that I have stopped crying all day.

I am sorry that this is such a long description of my life but, I have no one else to talk to, the doctors either don’t know what will happen or they have been refusing to tell me truth for fear of hurting my feelings.

Please tell me, what is going to happen to my body? As far as I can tell I have had it for 3 years and have entered stage 3 recently. Things have been happening fast; the blue/red freezing foot; a rash of some sort is on my toes and on the ball of my foot (does not itch) but, have become scaly and I have spots of paralyses. Will this disease invade all of my body eventually? How deformed will my limb get? I’ve seen the pictures; does that happen to all of us? Please help find the answers. I am completely lost.

Thank you so much for your time:
Angelique

I am a 34 year old female that just got diagnosed with CRPS. I had wrist surgery for osteochondritis and then in physical therapy, started noticing extreme pain. The therapist mentioned this disorder and it has been crazy ever since...I also have Keinbock's which is a bone that is dying in my wrist. My pain doctor told me that is the least of my concerns right now because we have to get my pain under control. I am doing ganglion nerve blocks every two weeks and just started on neurotin. That is a wicked drug. I only have the pain up to my elbow so we are hoping we caught it early enough. This is a scary thing to live with. I just started reading the other stories and I am finding encouragement from them. Good luck to everyone in their journey.