Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Share Your Experience


Please share your experience with reflex sympathetic dystrophy syndrome. Submit Your Comment

Comment from: Toyotatruck, 55-64 Female (Patient) Published: November 13

I've been living with reflex sympathetic dystrophy syndrome (RSD) since 2000. I have had all kinds of medicines. Never helped but, made pain worse for me. Family members or people that do not understand go bonkers. Even taking heart medicines, I am still in so much pain. I live with my pain daily. But, I do survive each day that I just keep going. I am not taking any medicines. The only thing I do is taking hot charcoal Epsom salt bath. It helps me a lot. I then have a nice cool drink.

Comment from: annie, 65-74 Female (Patient) Published: October 24

I broke my foot in 2004. After 30 x-rays they could not find the break. I worked with it broken for 6 weeks. The pain was unbearable. I cried every time I walked. After they did a scan they found the break of the talus bone. I than was put in a cast for 8 months non-weight bearing. It never healed, I had a foot fusion in 2006, and after I couldn't walk at all for 2 years. I have reflex sympathetic dystrophy syndrome (RSD); the worst pain.

Comment from: Sunshine, 55-64 Female (Patient) Published: June 25

I had an on the job car accident in 1987, Valentine's Day. I spent 32 years with reflex sympathetic dystrophy syndrome (RSD); really stinks. Yet I keep moving, if I stop I will lose the use of my limbs. It started with nerve damage. Just progresses as the years pass. You have to keep moving forward. Yes, the RSD can spread throughout your body, mine has invaded most of my internal organs. Yet you have to keep moving. Keep on keeping it on.

Comment from: Donny , 25-34 Male (Caregiver) Published: June 04

Our son has suffered for 8 years with reflex sympathetic dystrophy syndrome (RSD) and it was heartbreaking to say the least, to watch this amount of suffering. His was due to injury starting in his hand nerve damage which then moved up his arm into his shoulder. The doctors tried everything and every drug possible to deal with the pain but helped very little. They even had to induce a coma for his body to rest, but needless to say they the doctors said if they couldn't find anything to control the pain, eventually his organs would stop functioning.

Comment from: Joann, 65-74 Female (Patient) Published: February 01

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) in 2003 after I insisted on MRI of my right leg because of sciatica pain. I'd been telling doctors for several years about the pain but they said it was sciatica. The MRI showed a huge tumor (because it had been growing for years) next to my sciatic nerve. The orthopedic doctor operated on me. Unfortunately, it was a nerve tumor that was growing out of my sciatic nerve. Instead of calling a neurosurgeon to remove it, he cut it out of my sciatic nerve. I have RSD in foot now.

Comment from: MostPainfullDiseaseK, 55-64 Male (Patient) Published: January 07

Only get surgery if your life literally depends on it. An unsuccessful back surgery that nicked a root nerve has given me some unbelievable experiences with CRPS (complex regional pain syndrome). I am going to deal with it forever. The most depressing thing about it is the lack of knowledge about CRPS in the medical community. I've talked to many doctors who only vaguely knew or did not know at all about RSD (reflex sympathetic dystrophy syndrome)/CRPS. Then you look at the lack of any appreciable progress on making life better for CRPS sufferers and it is enough to make you feel depressed.

Comment from: Oj gman, 55-64 Male (Patient) Published: November 28

I fractured my fibula head and pinched off nerve in my knee replacement leg. I have constant pain, numbness, weakness, my leg gives way and I fall, I can't sleep, shower, and wearing pants hurts as well. I have a hard time dealing with my reflex sympathetic dystrophy syndrome at times and want my doctor to remove my leg.

Comment from: Mikeaijl, 65-74 Male (Patient) Published: November 13

I've had a number of broken bones, and three weeks ago I had my second back surgery. A week later I had extreme pain in my upper back, nowhere near the surgery, and it has continued since then with burning and pain when even a shirt touches my skin. My sister and two nieces have reflex sympathetic dystrophy syndrome (RSD) and my doctor thinks I have it also. I can't afford to have tests to confirm the diagnosis, but according to my niece, RSD is probable.

Comment from: claudeus, 55-64 Female (Patient) Published: October 02

I can't say don't despair because that's not possible when living with the excruciating all-consuming pain of reflex sympathetic dystrophy syndrome (RSD). I know because I had it in my wrist after taking a fall. Then after roughly 8 years, it just gradually subsided. The swelling and the pain eventually did cease for me. Although it left behind 7 fused wrist bones, and a limited range of motion and grip in my hand, I won't complain considering the alternative would be to still suffer from it. I was lucky, I hope you will be too.


The term arthritis refers to stiffness in the joints. See Answer
Comment from: antbones2 , 65-74 Female (Patient) Published: September 19

I have had CRPS (complex regional pain syndrome) also known as reflex sympathetic dystrophy syndrome, since the 90s and am getting steroid injections in my knee. I also had medicines decreased but gave up pain pump for several problems and my CRPS was somewhat under control for a while. I thought it was starting back from steroids and didn't think of being off oral medicine. Now I'm beginning to think you may be right. I have it in my left foot and ankle. Good luck with your CRPS and hope you get it under control. It does take a while to get medicines to help. Never goes away.

Comment from: Denee, 55-64 Female (Patient) Published: May 29

I have had complex regional pain syndrome (CRPS) after getting a pain pump for failed back syndrome. All of a sudden if a breeze touched my upper right leg I was screaming, then the aggressive muscle spasms began that turned my right foot toward my left foot and crippled me. A year later it spread with constant burning pain from my upper leg to my knee, my right foot and my left foot. All along my pain physician always said it was not CRPS. This year a neurologist finally diagnosed me with CRPS and it is spreading to my hands and my face. This began when my opioids were drastically reduced and I feel pain that is so bad in my shoulder.

Comment from: Gina Norville , 55-64 Female (Patient) Published: May 22

I had a blocked artery in my left leg, the doctor did multiple surgeries to dissolve it, and also did bypass. I developed reflex sympathetic dystrophy syndrome from too many surgeries. I have left foot and leg pain (burning pain in feet and legs), feels like you are walking on lava. I did 3 nerve blocks, 1 spinal stimulator, and take narcotics, but very little relief. Pain is progressing and spreading.

Comment from: Mama D, 55-64 Female (Patient) Published: May 16

I've had reflex sympathetic dystrophy syndrome since 1998. Today I live with pain, burning in legs, and needles in the bottom of feet. My legs and feet are swollen. I have lower back pain and shoulder pain. The doctor put stimulator in. He put the first one in wrong, removed it and put in a 2nd one. It didn't work long and the area where battery is, burns and no doctor will remove it. I live every day in the worst pain ever. But I'll tell you one thing. I won't give up, no wheel chair can hold me. My advice to you would be, don't give in.

Comment from: Steve Sr 77, 75 or over Male (Caregiver) Published: July 27

I've been living with reflex sympathetic dystrophy syndrome (RSD) since contracting shingles about 5 years ago. The RSD settled in 2 weak areas of my left leg, a weakened knee due to too much of the sport of curling (over 50 years) and a twisted ankle due to a golfing injury. Treatment over that period with Lyrica has helped. I am not in pain as others have described but my lefty leg feels numb from the knee to my big toe. Fortunately, it has not affected my being able to golf or do other activities such as gardening.

Comment from: Oziti, 55-64 Female (Patient) Published: September 19

I had both feet operated bilaterally for sizable neuroma removals twice in my 20s. I even fully recovered from a post-operation bone infection in right foot. Fast forward to my 30s and 40s. I had three more bilateral surgeries in each in a different inter space. I was told only that 2 earlier surgeries were not successful nerve cuttings. The last surgery was what has led to bilateral reflex sympathetic dystrophy syndrome (RSD). The post-operation pain got worse and worse. I was referred over to a pill counting pain management doctor who had no concern about a diagnosis or viable treatments. I spent years feeling and being judged as an opioid seeker. I had to retire at 44 and was found totally disabled. I continue to be grateful for Medicare and Social Security. Fourteen years later I still manage the pain levels, but now I have a 'team'. An absolute god sent pain management doctor who works with me monthly to try to maintain my value of daily life, my physical therapists and depression counselor. I have an implant SCS (spinal cord stimulator) and my 2nd intrathecal pump now running Prialt instead of opioids for the last 2 years. I still require breakthrough medicines. Don't ever give up. If not in my lifetime, but for our future generations, we must all remain positive in finding a cure.

Comment from: S MURPHY, 45-54 Female (Patient) Published: August 26

I hate having this reflex sympathetic dystrophy syndrome. The pain kills me, it feels like I am on fire. My feet burn, my legs burn and hurt so bad. Not a day goes by that I don't hurt. The pain is so bad I used to think about killing myself, then I would think who would take care of my kids better than me, and the answer is no one. So here I am trying to beat the pain, maybe one day I will.

Comment from: pston, 55-64 Male (Patient) Published: August 03

When I try working, repetitive motion causes my neck, shoulders, back, and chest muscles to feel extreme heat; like someone opened the door of an oven. Then a crushing, burning pain hits. It has dropped me in parking lots, in my yard, going to the mailbox, and it has put me in the hospital. All this happened after my left shoulder was operated on. It causes my blood pressure (BP) to go very high. Doctors suspect reflex sympathetic dystrophy syndrome RSD but refuse to diagnose. They try to treat the high BP but I keep telling them when muscle attack happens BP goes up because of the pain. I have a massage chair I sit on at home and BP goes down to 130 over 64 as long as I stay still. I need solutions.


Pain Management: Surprising Causes of Pain See Slideshow
Comment from: roberta13, 65-74 Female (Patient) Published: July 22

I have had reflex sympathetic dystrophy syndrome (RSD) since a botched surgery in 1990. There is no reason to live with the pain, a good pain clinic will get it under control. I also have a dorsal column stimulator in my spine; doctors accidently cut 2 major nerves in my right groin area.

Comment from: dorilech, 55-64 Female (Patient) Published: June 15

I acquired reflex sympathetic dystrophy syndrome (RSD) from carpal tunnel surgery. The pain was unbelievable when they took out the stitches. I had nerve pain in my hands for months. I currently have tingling/burning pain in my hands which is under control with Neurontin. My right side now mirrors the left (torn rotator cuff, painful elbow, carpal tunnel). I get shots in my back for osteoarthritis, I have had 3 shots in my neck for ganglion nerve blocks, my eyes are bad and my hearing is going in my right ear. I am frustrated with the doctors because they won't listen. I look okay on the outside so they assume that I am okay on the inside. I don't wish RSD on my worst enemy.

Comment from: Margaret, 45-54 Female (Patient) Published: May 17

I have had reflex sympathetic dystrophy syndrome (RSD) since 1998 onwards. I tried just about every treatment out there. I am on low dose Norco as a higher dose may not work during what I call just-kill-me pain. I had back surgery and have RSD in both legs. My suggestion is to find a doctor who actually listens to you. I am still active and try to deal with the pain. As hard as it is for us with RSD it is also hard on our loved ones.

Comment from: beejay, 65-74 Female (Patient) Published: May 12

I developed reflex sympathetic dystrophy syndrome (RSD) in my right foot after having what was supposed to be a minor surgery to remove a section of bone in my little toe where a corn had developed. That was in 1991 and I am still in pain to this day (2016). It took doctors three years and numerous treatments and medications before my condition was diagnosed. I have the tingling, burning pain in the foot on a constant basis. In 2012 I needed and had a knee replacement. I developed RSD in the knee too. I take pain medicines daily; use a power wheelchair, a walker, knee brace and cane to be mobile. I have gained weight as I cannot move as I once did. I have moments of depression, but have pretty much accepted this is something I just have to live with. If another doctor even mentions the word surgery to me, I panic. I will not go under the knife again unless it's a matter of life or death! People who do not suffer with chronic pain don't understand and think I'm sometimes making excuses for not doing things or for not wanting to do things. Truth is, I just hurt so I do less to feel better. I had to retire at age 44 because I could no longer do a job I loved. My wishes and sympathy go out to anyone who has to deal with this ailment.

Comment from: c manganelli, 19-24 Female (Patient) Published: May 05

I have reflex sympathetic dystrophy syndrome (RSD). After surgery it appeared. I found a chiropractor who had a machine called Calmar. I went for treatment and received relief. I now can get into remission with the machine. I also find myself lucky that my dad does pain management and has purchased the machine to help others too! I call it my miracle machine.

Comment from: odette, Female (Patient) Published: April 25

I have suffered from reflex sympathetic dystrophy syndrome (RSD) for over 17 years now due to an accident I had at work. I live on morphine on a daily just for the pain alone. I have had pumps to try and help me and then at the pain clinic I was informed I need a pump in my stomach for this. I feel like my world is falling apart with this thing that I have ended up with for the rest of my life. All because I knocked my arm on a door locker my hand goes blue and my fingers are bending in over like a claw. I would not wish this pain 27/7 on any one. I suffer awful pain day and night, which gives you massive chronic depression as well.

Comment from: Sue, 55-64 Male (Patient) Published: April 05

I had reflex sympathetic dystrophy syndrome (RSD) diagnosed in my wrist about 8 years ago. My hand swelled up and it seemed the finger nails on that hand grew faster than the other hand, and my arm also became hairier than the other side. The pain was like sciatica in my wrist. I went to 3 doctors before it was diagnosed and the hand specialist figured it out and said I need surgery immediately to clean it out. I am not quite sure what he did but the swelling subsided and pain went away and other than a slight restriction of movement and ring finger end joint doesn't bend, I'm fine now.

Comment from: Jazzy, 65-74 Female (Patient) Published: March 02

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) in 2006/2007 after having knee surgery. The first doctor I went to did not tell me what the condition was he was treating me for. When I went back to him for the second time I then asked him exactly what I do have, and he became angry because he thought he had told me, he hadn't. I immediately changed doctors. I started going to a hospital where the doctor treating was an expert in this field and explained it to me. I was receiving blocks (needle into my back) and it helped a bit but eventually, there was nothing more he could do. What he did say was I was never to have another surgery unless whatever I had was life-threatening. Yes, RSD is a nasty disease and when you have a doctor who refuses to discuss it with you, it makes it even more frustrating. I also have fibromyalgia and between the two I am in constant pain.

Comment from: rosa, 65-74 Female (Patient) Published: March 01

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) approximately 5 years ago. My diagnosis followed numerous visits to the general physician (GP), hospital, and pain clinic. Several years previous I had surgery to my right bunion. This is when my problems started. Although the pain from my bunion was removed, I suffered problems elsewhere. Symptoms included changes in the skin color of my feet and lower leg, and severe burning pain in my ankles, hips and lower back. I found it hard to function on normal day to day activities. What made my condition worse was the conflicting opinions of different doctors. I found it very hard to try and explain my condition as I had never suffered such pain before. On one occasion my leg was placed in plaster for 3 weeks as they said I'd shown that my left foot had damage to the ligaments and tendons. When the plaster cast was removed my pain became intolerable. Finally, I went to see a different GP who said that I may benefit from taking 60 mg of duloxetine in addition to the 300 mg of pregabalin that I'd been prescribed earlier. After many years I have finally found some relief, even though the side effects are not pleasant. I have gained weight and some days I am so tired and could sleep all day. But, this is much better than living my life in constant unbearable pain. What the future holds I don't know. I hope each day for a cure to this misunderstood disease.

Comment from: Tayden, 45-54 Male (Patient) Published: February 16

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) in 2009, 2 years after blowing my ACL (anterior cruciate ligament). At the time I had no idea what the disease was. Now in 2016 it has been over 9 years with RSD, many doctors, everyone thinking they have the answer or the perfect treatment, the truth is there is no answer and there isn't a perfect treatment. RSD affects each patient differently with different treatment options needed for each. What may work for one usually does not work for another, it is why it is so hard to treat. Personally it took me close to 3 years and 25 to 30 different medications before I found what helped. RSD is nasty, there is no cure and very few doctors are willing to listen. Most RSD patients know more about the disease than their own doctor, research all you want, there is no answer. Once diagnosed quickly find what helps your pain the most and stay the course, get help for mental health also. Nobody can live with this disease without mental help, it will drive you crazy otherwise.

Comment from: Wingnutt, 45-54 Female (Patient) Published: February 11

I have lived with reflex sympathetic dystrophy syndrome since I was 5 which is almost 45 years ago. Back then there was no name for it and I was told my back was out. I learnt to not go to the doctors as they didn't help. But now what I suffer with has a name and I truly have something. I suffer all over my body with this, I haven't been pain free for years and it just keeps getting worse. I believe I also have fibromyalgia but waiting for that to be confirmed.

Comment from: jo genesta, 45-54 Female (Patient) Published: December 08

I have reflex sympathetic dystrophy syndrome (RSD) and I have had it for 17 years now. It started with a knee surgery. I have had 37 surgeries in my life so the RSD attacked my whole body, both arms, both legs, and lower back. About five months ago both of my hands swelled up and are beet red and I have a lot of burning. I have tried every medication the doctors gave me but nothing really helped. I have had a spinal stimulator put in until a car hit me from behind and knocked my leads out of place. I've had a morphine pump in me for a month, nothing seems to help and to top things off I now have fibromyalgia.

Comment from: judy mathis, 65-74 Female (Patient) Published: November 13

Reflex sympathetic dystrophy syndrome (RSD) came on to me in 1995 after surgery to remove a Morton's neuroma. I live in a small town, and after many, many trips to every specialist, they could diagnose RSD. After many treatments and consults they decided there was nothing they could do but medicate me and send me on my merry way. I still have neurologists stating they are still not sure I have RSD. It has been a roller coaster. I lost my home, my husband, and my job due to this disease. I hate it. I want to be off the drugs but without the drugs I shudder to think what I would do to control this pain. It is a 24/7 disease. It never leaves you and is always in the limelight. As you can tell I am bitter over this. I keep thinking they can do hand implants but can't repair my foot from this pain. Thank you for listening, it helps to vent sometimes.

Comment from: Better, 65-74 Female (Patient) Published: October 27

I got reflex sympathetic dystrophy syndrome (RSDS) after back surgery. I had a ruptured disc with pieces of disc in the nerves for 1 1/2 years. I was seeing a pain doctor, but was told there was nothing wrong but that I was just fat. I asked my primary doctor to order MRI. I then went to a neurosurgeon and had a fusion. Soon after, my toes started to 'fire up'; they would at random times turn fire red, swell, prick and burn. The only thing that helped was to put an ice pack on. I could not touch my toes even with a sheet because it hurt so badly. I went to many doctors but no one knew what to do so it just kept getting worse, 'growing' up my legs almost to my knees. A doctor started doing sympathetic nerve blocks at the site of surgery. I have had one procedure per month for 5 months and it is gone from my legs but still in my feet, though not as severe.

Comment from: Female (Caregiver) Published: April 23

A year ago my daughter got diagnosed with complex regional pain syndrome (CRPS). It started in her right foot and has since also moved to her left foot, knee and thigh, mid and upper back. I am interested to see all the different treatments. My daughter has to be homebound because she cannot be touched, she hurts so badly. It breaks my heart to see her in so much pain. The family doctor refuses to give her pain medication because she is eleven years old. The pain is driving her crazy that she had to be put on Prozac. Her doctor tells her she has to learn to deal with it. This awful condition is hard to deal with and watch someone go through it. I am broken hearted because I cannot take her pain away.

Comment from: joannb., Female (Patient) Published: April 22

I am a reflex sympathetic dystrophy syndrome (RSDS) patient who is currently in remission. This remission has lasted currently 10 years. I had a fantastic doctor who really understood the syndrome as well as a neurologist who spotted it quickly and sent me for a block for diagnosis, which was positive. I live day by day hoping I never retrigger this syndrome. I still worry about any injuries thinking it is going to retrigger it. Mine started with a sprain to the wrist and I ended up within 2 years, with RSDS in my entire body. Lots of blocks were done. Find a good doctor who really knows and understands what you are going through. I can honestly say that I had the best doctors and a great support system.

Comment from: Cyndi, 35-44 Female (Patient) Published: March 09

I tore my ACL in my left knee in 2002. My orthopedic surgeon decided to treat it with a steroid injection. Within an hour of this injection, my left leg below the knee started swelling, burning, turning red, and a temperature of 10 to 15 degrees colder than the rest of my body. The hair and my toes nails quit growing over the next couple of months. I was unable to put on clothes, shoes and even unable to cover it with blankets while I slept. No one or nothing could touch my leg or foot. It took several months and doctors to diagnose me with RSD (reflex sympathetic dystrophy syndrome). Over the next couple of months my doctors tried everything from pain killers, physical therapy, neurological medications and spinal blocks and nothing helped. Then in 2005 one doctor suggested an internal spinal cord stimulator (SCS), and thankfully this relieved approximately 50 percent of my pain. With the SCS and pain killers, I am able to return to somewhat normal life.

Comment from: Andrea1974, 35-44 Female (Patient) Published: February 24

I suffered a sports injury hurting my back but the pain I developed immediately (on a scale of 10 I give it an 11) was in both my thighs making me unable to walk. I went to hospital by ambulance and they had administered morphine to no effect. I told them till I was blue in the face that I hurt my back initially not my legs and that I could now not bear anything near them, even the breeze blowing on my legs. The nurse went to remove a piece of cotton off my leg and I flinched in agony. The shorts I had on had to be lifted up even higher as these hurt touching my skin. I was discharged with crutches, a script for codeine and told I must have internal bruising! I went to the physiotherapist the following week still having to use the crutches as my thighs where so sensitive it hurt. My physiotherapist straight away told me I had RSD (reflex sympathetic dystrophy syndrome). I was so grateful to know what it was. He suggested acupuncture, I gave it a go and, goodness, amazing! The pain went from a 10 to a 5 easy after the first session. I suffered with RSD on and off for nearly 5 years to different degrees but I swear by acupuncture as relief (for myself anyway).

Comment from: DR. PHIL, 55-64 Male (Caregiver) Published: January 22

I am a dentist and have been treating a patient that was diagnosed with reflex sympathetic dystrophy syndrome (RSDS). Treatment for her dental needs has been ongoing for seven years. We have been battling severe decay issues as well as periodontal problems (gum disease problems). Many of the medications that she takes cause some xerostomia (dry mouth). That probably is the cause of her dental issues, but I am not certain of this.

Comment from: Marie, 55-64 Female (Patient) Published: January 15

I had knee surgery to repair a torn ACL (anterior cruciate ligament) in December 1992; I awoke in horrendous pain. The pain continued for several months before I was diagnosed with reflex sympathetic dystrophy syndrome in August 1993. I have taken oral medications, received spinal injections (bupivacaine) in 3 separate series, and while they helped immensely, I live in pain every day. Some days are better than others and I am able to ignore it pretty well. It's been over 22 years but I still require prescription pain medications several times per year to cope. (I average less than 10 pills per year, so I'm not addicted to pain killers.) For anyone just starting out, even if the pain is permanent, it can be managed and while life may never be the same again (I still can't downhill ski or rock climb), life can be good and you can do almost anything. It just took too long for my diagnosis and there was too much damage. I was diagnosed with 45 percent strength and endurance and no amount of electrical shock therapy brought any additional strength or endurance back. Do your best in your therapy; it'll benefit you more than anyone else. Work through the pain and try to enjoy life as much as possible.

Comment from: sundance, 55-64 Female (Patient) Published: January 13

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) 26 years ago. They thought I had tendonitis so the doctors put my left arm in a cast, to rest it for 6 weeks. It was the worst thing they did. My arm was skinny, sore to the touch, and my fingers were very swollen. I was taken off work and put in therapy, which was extremely painful. So after all these years the pain is 24/7. I take Oxyneo also known as oxycodone. I take 140 mg every 12 hours. I also have anti-depressants. The RSD has travelled up my left arm into the shoulder up my neck and into my right arm and hands. But I have to keep going, I have 3 beautiful grandchildren and there is someone worse off than I am. What doesn't kill you makes you stronger.

Comment from: sam, 45-54 Female (Patient) Published: December 29

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) in 2005. My right leg from my knee down is affected and also my left ankle and foot. I have two children, both delivered naturally and this RSD is the most painful, agonizing and irritating. I cannot get anyone to help me. Well, I don't really know but I do know they just don't seem to care anymore. I have several times asked the doctors to cut off my leg to the knee; no success. I'm so miserable I want to die. I'm not living, just existing, what kind of life is that!

Comment from: laurie, 13-18 Female (Caregiver) Published: December 18

My daughter has reflex sympathetic dystrophy syndrome (RSD) since she was 10 and she is now 13. She got it from a sprained ankle. She has learned to cope with it, but recently she hurt her knee and the RSD set in and it took her three months to get off her crutches and this case was worse than usual. But I have noticed that she is more aggressive and she gets angry more easily. Her grades are declining and she was suspended from school for the first time ever.

Comment from: LISAR624, 45-54 Female (Patient) Published: November 18

I have been living with reflex sympathetic dystrophy syndrome (RSD) for 18 years. It was not diagnosed right away. I am still dealing with it in my right arm and it spread to my left arm. After my back fusion it spread to both legs. I use to have a job and lots of friends and a social life. I am now in bed 90 percent of my day and have about a handful of friends. I am looking for a support system that has other people dealing with the same intense pain!

Comment from: T-rev, 35-44 Male (Patient) Published: October 21

I was shot in the arm back in 1998. It required surgery to remove the bullet. After surgery I had extreme pain in my left hand. Pain was so bad if you looked at me or even walked close to me it would be unbearable. The only thing that would calm the pain was very hot water. My skin would shed off my hands and fingers. After countless doctor visits I finally saw a pain specialist. He finally diagnosed me with reflex sympathetic dystrophy syndrome (RSD). He tried medications but with no success. He finally tried a nerve block. It was amazing. After 3 months of constant pain I had 30 minutes of relief. It was the best 30 minutes of my life. I went on to have 10 more blocks. As soon after the block was given the doctors began touching and rubbing my hand. During the 10 week period I did physical therapy. It worked. The doctors told me with RSD your nerves go haywire. The touching and rubbing teaches your nerves to be receptive to normality again. I could not imagine living the rest of my life in that kind of pain. The treatment took well over a year with slow but forward progress. I am now pain free.

Comment from: Karen C, 45-54 Female (Patient) Published: October 15

I had a fall at work in 1993 and injured my knee. Because of the lack of care by my workplace, I developed reflex sympathetic dystrophy syndrome (RSD). It took them 2 years to figure out what was wrong with me. In that time I had severe cold in my left leg all the time, and would drag my left leg when I walked. I eventually went to a pain clinic and had nerve blocks. Because of this damage it took another 10 years to get my gait back to a normal walking stance which caused me to have sciatica and many years of chiropractic care. I have had carpal tunnel on both hands and had a severe case of tendonitis in my left ankle, all which required surgery. My pain is at a manageable level but I still have bad days. I have a permanent bruise below my left knee which get darker when I am having pain issues. I have special orthotics which make it hard to buy shoes. I currently have an issue with my right hand, called trigger finger, which will most likely require more surgery. There is hope, but you have to keep on top of any symptoms before they reach an unbearable pain level. I wish anybody with this syndrome all the luck in the world and don't let people think it is all in your head.

Comment from: Genrarilized R.S.D., 55-64 Male (Patient) Published: September 10

At 39 years old, I was involved (rear-ended) in a motor vehicle accident while on the job. Nine long and horrible months passed before I was diagnosed with an extremely rare condition, reflex sympathetic dystrophy syndrome (RSD). I was also diagnosed with fibromyalgia and chronic fatigue syndrome. Any one of these conditions can be disabling. But also, my RSD is diagnosed as generalized RSD (meaning it is body wide and I can feel the burning in my brain). Most specialists are not aware of RSD and even if they are, they definitely have never heard of generalized RSD. I get no sleep for days and weeks or sleep for days and weeks, cannot move at all, pain in the brain, pain body wide, both feet and hands swelling and turning colors, etc. I am a 16 year survivor of reflex sympathetic dystrophy syndrome. I have experienced so many symptoms, many more than most RSD patients.

Comment from: jackiech, 45-54 Female (Patient) Published: August 27

I was so lucky not to get reflex sympathetic dystrophy syndrome (RSD) after my first back surgery in 2008. The pain and bulging veins in my arms and hands were so bad it felt I was being hit with a baseball bat. No one knew what to do or how to treat. I am sensitive to most pills so I suffered for six months until finally I was diagnosed with RSD. I use cold ice packs to help with pain and take 5000 units of vitamin D and alpha lipoic acid. I can tell you that wine, spicy foods and rain trigger my pain. I found one cream that works, from my pain management doctor. It is from America's Best Care. No side effects and it does work.

Comment from: Marlene Griffin, 75 or over Female (Patient) Published: August 25

May 1, 2014 a flying insect left its stinger in my right thumb and immediately my hand went dead to use and pain started. Since then I have seen many doctors and now doing therapy which is helping for movement but not pain, which is terrible, hot knives is what the sensation feels like. I also had carpal tunnel surgery for a second time on my hand. I am taking Lyrica and it seems to be helping the reflex sympathetic dystrophy syndrome. At least I can sleep at night as the pain isn't as bad as when it started. Just typing this with the left hand and a couple fingers on the right is a chore. I have never felt such pain.

Comment from: kathie, 55-64 Female (Patient) Published: June 20

I have had reflex sympathetic dystrophy syndrome (RSD) for 24 years now. I had a soft tissue injury, and after several months of the doctors saying, give it a couple more weeks (and one doctor actually said it was basically my imagination), the doctors finally referred me to a specialist who diagnosed the RSD. I had no idea what that would mean to myself or my family. He started nerve blocks and pain management that same day; I guess that should have told me something. Two years of twice weekly nerve block, pain management and physical therapy later, if anything I was worse. I was then referred to a surgeon who suggested sympathectomy. At this point I would have done anything. My quality of life was at a low, my children and husband had taken on the role of my caretaker. The surgery itself and the aftermath were a horrible experience, but it helped so much, gave me back my life. The pain is bearable most of the time now, big weather swings will bother it. My arm is weak and seems to be getting weaker with the passing years, but I work a full time job, and I love to garden. I do most of my own house work, my husband will do the heavy lifting for me. I live my life as positively and as effectively as I can. But there is one thing that is driving me crazy - does anyone experience an itching sensation? Someday it is so bad I will almost scratch my arm raw. This thing called RSD is part of me and I live with it as best I can. Good luck to all of you.

Comment from: Faith, 55-64 Female (Patient) Published: June 05

Seventeen years ago, after suffering with tendonitis, I had an ulnar nerve transposition. I awoke after surgery in extreme pain which continued for 4 months when my physiotherapist finally told my orthopedic surgeon. They thought I had reflex sympathetic dystrophy syndrome (RSD). My left arm was swollen, purple, and sensitive to touch and temperature, my finger nails ceased to grow, I had a long patch of black hair that ran on the underside of my arm and finally no longer had use of my hand or arm. I was prescribed drugs, nerve blocks, pain management and hypnosis. I finally have just learned to live with it. Some days are good, some days bad. But I am alive and remember there are many more people in this world worse off than myself.

Comment from: Gator Girl, 45-54 Female (Patient) Published: June 04

In 2009 I was in a car accident and had to have brain surgery in 2011. From the car accident my hips began to burn and swell. At first the doctors just said that I was gaining weight. After the brain surgery I had to have my rotator cuff fixed and a tear in bicep. Within days my hand swelled and turned purple. I felt as if I had glass all in my hand and arm. The orthopedic doctor said it was from being in the sling and I more than likely had a pinched nerve. This went on for about 2 months. My occupational therapist said she thought it was complex regional pain syndrome (CRPS). I went to my neurologist on my own and asked him. He took one look at me and said he was sorry but yes, I had reflex sympathetic dystrophy syndrome (RSD). I had 6 blocks in my neck to see if it would help, but not one block took. I am better in my hand all except that my fingers are all contracted and that will never change; and now they have finally decided that it has spread to both of my hips. I am in constant pain in my hips, but life must go on. I am still able to work and I am grateful that I have a loving family that helps me on a daily basis.

Comment from: Dawn1959, 45-54 Female (Patient) Published: May 30

I have reflex sympathetic dystrophy syndrome (RSD), 7 years now. I am now 54. The cause is still in question. I had arthroscopic surgery on my left knee and my pain increased. The doctor and I decided a total knee replacement would be the best course of action. During surgery my tibia was fractured and screwed together. I worked diligently at physiotherapy, my pain increased and my range of motion lessened. The doctor did a manipulation, I lost 5 degrees more motion. Once again the pain increased. By this time I could no longer stand to have my leg touched by fabric. I live in the Northeast, wear short skirts year round which is cold and embarrassing. A year and 3 doctors later I was diagnosed, I was told that it might not be too late to halt it. After I had 17 sympathetic nerve blocks, the small relief was outweighed by the risks. I now take a number of medicines to lessen the symptoms. I recently started a Butrans patch which keeps my pain at a tolerable level. I work but am losing ground fast.

Comment from: Brianna, 25-34 Female (Patient) Published: May 21

I have had reflex sympathetic dystrophy syndrome (RSD) for 5 years now due to a car accident that broke both of my legs. I had a nerve cord stimulator surgically placed and have never felt better! I still have pain but am able to function and work. My pain level decreased by at least 60%! Ask your doctor about this and Lyrica.

Comment from: Lisa, 45-54 Female (Patient) Published: May 21

I have had reflex sympathetic dystrophy syndrome (RSD) for 22 years now. It's been a rough road. It began in 1992. I had a bad car wreck and crushed my hip. After 2 surgeries, I healed quickly however, I started having stinging pains (1000 stinging ants/bees) in the foot of my broken hip. After suffering a great deal, mentally I was exhausted. There was no sleep for 6 months. I averaged 2 hours a day. Finally after 8 months, I found a podiatrist that prescribed me with Elavil. I slept 15 hour days for the next 6 months (catching up). It helped calm the nerves in my foot so I could finally sleep. She also told me to take lots of Tums for calcium. I haven"t taken anything for my RSD in about 17 years. I have bad days and good ones. I think overall my life has been altered due to this horrible disease.

Comment from: Paige, 19-24 Female (Patient) Published: April 11

I was diagnosed with reflex sympathetic dystrophy (RSD) when I was 17. I had an injury to my back when I was 15 and was put on crutches. Doctors didn"t listen to me and thought I was faking the whole thing because all my tests came back negative and I saw countless specialists. My left leg ran hot and cold, I would get bad burning, stabbing pain in my leg all the time and it would go numb for no reason. It also turned purple, splotchy and shiny. My rheumatologist sent me to a pain management specialist who finally diagnosed me with RSD as well as a slight herniated disk and a pinched nerve which caused my RSD because it went untreated. After 2 years of physical therapy, 4 radio frequent lesions, and 2 nerve blockers, I"m 21 years old now and I still suffer with RSD. I can manage it so it doesn"t cause me too much pain all the time but I still have bad flare ups 3 times a year, which last 2 months at a time. I"m still in pain constantly but it"s only about a 4 whereas it used to be a 10. It took me 8 months to get off my crutches and I still have muscle atrophy from the nonuse. I"m glad I didn"t give up on going to doctors but I"m still upset because I was a kid and no-one listened to me until I found a pain specialist.

Comment from: agatha, 55-64 Female (Patient) Published: March 31

In 2001 I was hit by a large door at the mall when I was on my way to work. I had a hand injury, went to the hospital, was treated and released. I went for physiotherapy, had surgery, and had several types of physiotherapy. I was always in pain, so finally in 2002 I was diagnosed with reflex sympathetic dystrophy (RSD). I went through 2 blocks, which was a nightmare, gave up on them, so since 2002 I have been taking medication. There are some days that I can deal with the pain, but other days the pain is unbearable. I would not wish this on anyone. I hope someday they will find a cure. This condition really takes a toll on your whole body.

Comment from: grandma connie, 55-64 Female (Patient) Published: March 25

I fell and broke my femur in 2001. Within three hours of having the cast applied, I felt a burning so intense that I could barely stand. It started in my foot and ankle. I tried telling the doctor over the next six months but he wouldn't consider anything being wrong. Eventually I was sent to another doctor who knew immediately it was reflex sympathetic dystrophy syndrome (RSD). Over the last 13 years I have had several nerve blocks and have taken dozens of different medication cocktails to help the pain. The skin on my foot peels like a sunburn. I can't have any kind of light touch on my foot or heel, and the muscles in my leg are deteriorating now. I feel the same symptoms in the other leg since a knee replacement.

Comment from: Vera, 45-54 Female (Patient) Published: March 19

On December 2012, I had an operation on my right hand for carpal tunnel, three weeks later my hand was swollen, purple and shiny and I had a variety of pains, sometimes it was throbbing, a burning sensation, acute constant pain and more. The surgeon told me I had developed reflex sympathetic dystrophy syndrome (RSD) and told me to start physiotherapy right away. I did this for a few months to no avail. I saw a pain specialist several times and he just kept increasing the pain medication. I became desperate, my depression got worse, I went to a chiropractor who offered neurological treatment, which did not help at all. After spending thousands of dollars the pain is still there. Over a year later I am still off work. I have limited use of my hand also I am sleep deprived. I am currently taking gabapentin, Apo-Naproxen and mylan bupropion as well as depression medication. On my last visit my doctor doubted me that I was in so much pain and even told me that RSD lasts one year at the most and told me that I am getting better. I wish more doctors took the time to get informed on this decease.

Comment from: Carolina1964, 45-54 Female (Patient) Published: March 14

I had surgery for a partially torn tendon in my right hand January 18 2013. Two weeks after surgery my hand seemed to be excessively swollen. They removed the cast 3 weeks after surgery and my whole right arm was swollen from the bicep down. We immediately started therapy but after 2 months it wasn"t improving. I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) and since have had 4 nerve blocks, tons of therapy and take Lyrica every day. It has been over a year, I have some function in my hand and wrist but it will never return to normal. The pain is controlled for the most part. When asked I say, it's not 'will I hurt today', but what pain will I feel today. I have burning, stabbing and throbbing, wrist, hand, bicep and shoulder pain. I just know that I can survive it.

Comment from: Inpainconstantly, 25-34 Female (Patient) Published: March 13

I am only 29. I got in a car accident in 2001. I got diagnosed with fibromyalgia and other issues. The other day I went to the doctor and he told me I have reflex sympathetic dystrophy syndrome (RSDS) as well. I developed arthritis in my back. I developed sclerosis of the spine, not severe yet, thankfully. I live each day medication free and deal with the pain as much as I possibly can. I've been called a liar by many doctors, saying I couldn't be in this much pain on a daily basis. It starts at my necks and spreads through my body down through my feet. I do have to go to a pain clinic. I raise 5 children and honestly worried about how long I'm going to be able to keep up with them in my shape. My body aches constantly. Luckily I don't have the burning feeling most get with it, just tremendous pain. So just to say to those out there who have this I really know what you are going through and it is a hard thing to deal with.

Comment from: Debbie R., 35-44 Female (Patient) Published: March 13

I got reflex sympathetic dystrophy (RSD) when I fell out of bed at hospital after having a total knee operation and was on the floor for approximately 45 minutes with me sitting on my operated leg. I have tried Dilaudid, Lyrica, Cymbalta and Xanax without much help. I thanked my doctor for showing me that something hurts worse than having a total knee replacement. I have dropped foot which they tried to fix, which didn't work and hurt worse than the total knee operation. I wouldn't wish this on my worst enemy. I was lying in bed waiting to die before I moved to Florida, the exercise in the water and swimming has helped greatly but nothing will ever make the pain go away totally. And now it is climbing into my spine. I don't know what I will do when it goes in my spine. No one told me that it would travel but it will.

Comment from: Charlie, 45-54 Female (Patient) Published: March 13

I was diagnosed in 2002-2007 with reflex sympathetic dystrophy syndrome (RSDS). I was on Neurontin for 4 years up to 2100 mg a day. That messed me up by making me stutter, and have twitches in my arms and head. In 2007 I went in to the hyperbaric chambers and I am now pain free for 7 years. They say you never get rid of it or go into remission. I say I am cured. The hyperbaric chambers was expensive but in the long run worth it. Because I am not on the medications, I no longer stutter or have the twitches. I am normal again. I am having dental problems but I think that was because of the medicines I was on. I am now happy and feeling good.

Comment from: Robin, 45-54 Female (Patient) Published: March 07

I slipped, and ended up with herniated disc, L 3 L4, and L5. My nerve root was and is still impinged. I had surgery, three months later, was said to be a failed back surgery. I was and still am on pain medications, later injured my neck, bulging in three places. I will suffer, but I will not put myself through another surgery. I noticed a bump on my foot, doctor thought it was a blood clot, yet, there was no color change; it just got larger. Then my knee, one side in joint area, was so swollen, painful to even have my finger touch my own skin. Sometimes it was hot, burning, sometimes cold, and sometimes it will itch, but the one thing that is constant is pain. What I was told is I have, reflex sympathetic dystrophy syndrome (RSD) type II. It was from opening up my spine, and or the spinal injury. It is in my hip, and now the bottom of my right heel for months has been burning, and hurting, so painful, it feels like I am walking on pure bone. It helps if I place a pad in my shoe or just stay in my wheel chair when my balance isn't good. I just live with it. If I didn't have my pain medicine, I know I would be bed bound. I am very good about not taking it just because the time has gone by, I just try not to let the pain control me.

Comment from: rmaxwell, 45-54 Female (Patient) Published: January 27

In September 2013 I spent 19 days in ICU for necrotizing fasciitis in my right thigh and had 4 surgeries to "clean" out the infection. On Oct. 24 I had another surgery to eradicate MRSA infection, my incision is from the crease of my thigh to the bottom of my knee (30 cm). After I was told I could begin physical therapy I started experiencing extreme pain, I thought my incision was infected again! So I saw my surgeon and she diagnosed me with RSDS/CRPS (reflex sympathetic dystrophy syndrome/complex regional pain syndrome). My pain is horrid, the burning and stabbing pain, I can't stand having clothes touch it and blankets at night are awful, I don't get any sleep. I can't sleep in my own bed with my husband, I sleep in a hospital bed, because the slightest movement just sets me off and causes me to have pain. My doctor put me on Neurontin today, I just hope it takes the edge off since I'm already on Vicodin and it doesn't do much.

Comment from: Picassoette, 45-54 Female (Patient) Published: January 27

I had a spinal fusion L5/S1 in 7/2011 and have had right foot pain so debilitating I could not walk on that foot. I also have lower back pain, throbbing, burning, and back spasms; the feeling of razor blades in my foot. I had nerve blocks. I take Percocet for the pain, which help a little. I take 1 mg of Xanax to sleep, without that I was a hot mess. I think it is related to the surgery, prior to surgery I did not have any foot pain. I was told I also had nerve damage. This is crazy that someone cannot figure out why there is a sudden onset of RSD (reflex sympathetic dystrophy syndrome) when it never existed before!

Comment from: mjrc, 35-44 Female (Patient) Published: January 10

I have been recently diagnosed with RSDS/CRPS (reflex sympathetic dystrophy syndrome/complex regional pain syndrome) after being ignored about an ongoing painful problem with my right foot for 4 years. Initially dismissed at the emergency room my right foot is ice cold, turning color and extremely painful. I started having difficulty at work standing all the time. The pain was incredible. My PCP (primary care physician) brushed it off. After spraining my ankle it was discovered I had abnormal blood flow. I had the burning in my shin, painful to touch. I had lack of hair growth. Six years earlier I had L4L5S1 fusion, now fibromyalgia as a result. I continue to have horrible low back pain, especially the tail bone which makes sitting difficult. I have had all types of injections recently from pain management and tried all types of pain medications with no relief.

Comment from: Tree Garrison, 35-44 Female (Patient) Published: January 03

I have extreme pain, rashes all along my back side and working their way to my upper shoulders. I move about a lot, can't sit still due to pain and stiffness and have trouble sleeping. I got nerve blocks that help, after two weeks of dealing with this pain and at this point don't know what else to do. I don't know of anyone nearby who has reflex sympathetic dystrophy syndrome and don't have anyone to talk to. My doctor doesn't understand this and takes it with a grain of salt looking at me as if I have no problem due to the fact that I smile a lot trying to hide my pain. The rashes hurt when I'm touched and when the temperature changes and it only increases. I put lotion on and still there's no peace. I have had this since 2000.

Comment from: Boyce, 45-54 Female (Patient) Published: December 30

I have RSD (reflex sympathetic dystrophy syndrome), I have had it since 1997 and now it has moved into my arm, I am getting worse and not better! The pain I have to live with on a daily basis is unbelievable, sometimes I feel that it may be better to have my leg cut off than to live with the pain I have, the feeling of burning, and the bone feeling as if it is going to explode. People that have this are likely to get broken bones, I am suffering from stress fractures, I have broken this foot before just by walking in a movie theater. It is harder and harder for me to work, I cannot work a full day now; so, I have to work two part time jobs so I can take a nap between to get the rest I need to survive the day. I have a spinal cord stimulator, for years that was enough for my leg, but now it is not. I have had to go back to have pain blocks and morphine treatments as well as pain patches.

Comment from: Matt, 55-64 Male (Patient) Published: December 02

I stubbed my toe on something 4 years ago. About 6 weeks later, that foot started burning, as if bees were stinging my whole foot. I didn't know what it was, and the doctors I went to said it was gout. The pain was so unrelenting, I couldn't sleep. I missed 5 weeks of work because I was up day and night. Finally, a doctor diagnosed it as RSD (reflex sympathetic dystrophy). He gave me gabapentin and tramadol. I slept for the first time that night. I had a nerve block, acupuncture, and chiropractic therapy where they pushed on my neck. All this helped a little. I still have it and it is managed. But it is not fun. I wish they could get a medication that would stop it altogether.

Comment from: Concerned Mom, 13-18 Female (Caregiver) Published: November 14

My child started her pain a month after she turned 13. We are in the 9th month of her suffering in pain. It's heartbreaking to watch a child break down and cry because of pain and not be able to help. We went to an orthopedist who quickly dismissed us. Her family doctor couldn't understand and did blood work to test for leukemia. I still don't understand why to this day she was tested for leukemia. After a while I took her to a podiatrist who treated her for a sprain. After months of not getting better an MRI shows nerve issues. We go this month for the first treatment of RSD. Her foot swells and changes colors, and some days she can barely walk. She has missed school due to her pain. My wish is more doctors could learn and be aware of this.

Comment from: Dayna' Dad, 13-18 Female (Caregiver) Published: November 06

My 16 year old daughter has had RSD (reflex sympathetic dystrophy) for two years, did the trial for the SCS (spinal cord stimulation), had nerve blocks and Lidocaine infusions, had been on multiple pain killers and Lyrica with no relief. We just returned from having two weeks of Calmare therapy and she left free of pain. It has given her life back and she now has hope for a future. Only a patient or caregiver can begin to understand the horror of RSD. Calmare worked for her.

Comment from: Minnesota patient, 65-74 Female (Patient) Published: October 28

I had surgery on July 30th for rotor cuff and reattachment of an atrophied muscle that has been off my shoulder for several years! I had a swollen hand within a couple days. The physician's assistant didn't take my swollen hand seriously and even stated in my chart that it was getting better when in fact it was getting worse. When the pain was getting worse and I was waking up with throbbing in my hand (two months and three weeks after surgery) I insisted on seeing my surgeon. He immediately diagnosed RSD and is prescribing therapy. He said he may use a nerve block. I'm ready for one now. I will see the surgeon again November 14th. I'm concerned that I wasn't treated early enough.

Comment from: rudders143, 25-34 Female (Patient) Published: October 18

I have had RSD (reflex sympathetic dystrophy) for 8 years now. I have had several surgeries on my left ankle and knee after I was injured while on active duty. I have been on Lyrica and now on gabapentin. I have had nerve blocks, injections, several different types of pain medications, sleeping pills and so on. I am at the point where I would rather have the leg removed. Finding a doctor to do so would be very difficult. I can't function much with the leg and I am only 31 years old and it is getting worse over time. All I can do is deal with it until I am able to find a doctor who will remove it.

Comment from: Celie, 45-54 Female (Patient) Published: October 15

I developed reflex sympathetic dystrophy (RSD) as a result of a traumatic injury to my knee. Traditional therapy made it worse. I have colitis and cannot tolerate non-steroidal anti inflammatory drugs or pain medications. Anti depressants made me feel like a zombie. Klonopin was prescribed for the initial treatment and did help me sleep. I have had RSD since 1990.

Comment from: LooLoo70, 35-44 Female (Patient) Published: October 15

I was in a car accident in 2007 and suffered neck and back injuries. I was unable to turn my head for more than 7 months, yet no one could tell me what was wrong. For more than 4 years I had countless procedures including having the nerves in my neck burned off (no effect on my pain level), nerve blocks, cortisone shots, 2 different neuro-stimulators put in, the first in 2009, which didn't work at all, then the second in 2011, which made things much worse as I came out of surgery with both of my hands and arms feeling like they were on fire. The neurosurgeon finally diagnosed me with reflex sympathetic dystrophy, more than 4 years after my accident. Last year I had a morphine pump inserted and although it provides better pain relief than pills, a good day for me is still a pain level of about 6.5 and on the bad days the pain is around a 9 and nothing helps.

Comment from: sthrnchrm30, 35-44 Female (Patient) Published: September 18

I was just told that I have CRPS or RSD, and it makes me nervous to know that for all these years that I have been suffering I was told by people that it was all in my head and that I was just looking for pain meds. To find out that I have had this for so long because every doctor I have seen misdiagnosed me, makes me angry. I am not sure how long I have even had this condition, and the doctor that is treating it is being very aggressive. I am 41 and I have a 3- and 6-year-old that I have to take care of. I am not even sure what the treatment will be. For now, all they have started me on are high doses of steroids, gabapentin, and sleeping pills.

Comment from: Not brave, 45-54 Female (Patient) Published: September 19

I was just told about reflex sympathetic dystrophy syndrome after my fracture to the ankle. Mine is quite significant to this article. I believe the military knew I had this for over 15 years with developing myopathy in muscles that suggested reticular myopathy. So horrible to know all the tests were there and nothing was done to prevent it, Instead being psychoanalyzed for over 16 years and all about my being too thin, while my stomach muscle also shut down after eating too much and not exercising. Isn't this nice; half a colon and now muscle problems.

Comment from: shy, 45-54 Female (Patient) Published: September 06

I hate having reflex sympathetic dystrophy syndrome, the pain kills me. It feels like I am on fire, my feet burn, my legs burn and it hurts so bad. Not a day goes by I don't hurt, the pain is so bad I used to think about killing myself.

Comment from: worriedmom, 19-24 Female (Caregiver) Published: November 11

My daughter (aged 23) was diagnosed with reflex sympathetic dystrophy syndrome (RSD) after a fall on her knee. The pain is excruciating and she is using a crutch and we start seeing a physical therapist this week. In the meantime, I am reading posts saying get a good doctor who understands the seriousness of RSD. I hate to see her suffer so much!

Comment from: Sue Lee, Female (Patient) Published: September 28

After suffering for 7 months I was kicked to the curb by family doctor and orthopedic doctor because they had no clue what was wrong. I have been in pain and in a wheel chair for 7 months not knowing what is wrong until today. I went to get a shot for rotator cuff and the physician's assistant told me that it is reflex sympathetic dystrophy syndrome and referred me to a specialist. I also have been very angry, suffering horribly and having no life. I can't wait to get the right help and I hope it works.

Comment from: pwh101, 45-54 Male (Patient) Published: March 31

I had a bad accident at work where both wrists and hands were crushed in a 400 ton press. I had numerous operations that have given my reasonable functioning hands. Unfortunately after a second operation I awoke in unusually severe pain. It was put down to the operation but the severity increased within hours of the surgery. This was 25 years ago and I have been suffering with the pain ever since. This is the first time I have written about my reflex sympathetic dystrophy syndrome. I hate it. It rules my life and controls me. I scream! I shout! I cry! All a daily event. I have lost friends. I have stood on a motorway bridge and switched on a chain saw. I am still here and refuse to surrender anymore.

Comment from: Faith, 55-64 Female (Patient) Published: December 30

I fell on my elbow and was diagnosed with reflex sympathetic dystrophy syndrome (RSD). After a year and a half, I have had RSD for almost 2 years and I have sharp stabbing pains, swelling and muscle spasms. What works best to relieve my pain is ice packs and pain patches. After reading about what helps other RSD sufferers I am going to try the water exercises and swimming. My life was almost consumed with the pain and how my life had changed, because I thought about it all the time.

Comment from: terryj, Female (Patient) Published: December 03

I got reflex sympathetic dystrophy syndrome (RSD) in 2001. After many trials of various medications including morphine, none of those worked. My doctor at the time prescribed Nubain which I injected myself, and this brought it under control. I am allergic to morphine in all various forms. Gabapentin caused memory problems as did others. Now I have a different doctor and again the push is for gabapentin again. Is there nothing new out there, as what worked before is not available to me now!

Comment from: JohnS., 55-64 Male (Patient) Published: October 07

I am almost 60 and have had reflex sympathetic dystrophy syndrome (RSD) since 1972. I was one of the first morphine pump patient for lower back pain nobody understood. I have had 53 operations and am on my 3rd morphine implant and 3rd nerve stimulator. My feet alone are a mess with 23 operations, with both hands contracted, all permanent. I have not been able to work since 1982 and am at home wheelchair bound and home bound 90% of the time. It took many years of hot charcoal sewn into my legs to keep burning for life but now find that socializing is my best help. Good luck to all, I know this pain is unbearable please know others do understand.

Comment from: Shannon, 25-34 Female (Patient) Published: May 07

My foot hurt after running a marathon, not exactly unique. However, the first doctor said I had avascular necrosis, then he next said arthritis. I wasn"t convinced with either of these and demanded a second opinion. This was October 2013, I spent 2 months on crutches, while teaching, until I finally just took myself off. I have had 2 nerve blocks, which did nothing, and have been in physical therapy since December. This has helped tremendously but personally I need to listen to my body more and stop when I need to. I have since been to see a rheumatologist to look at some sort of underlying cause to this whole thing. If anyone can share strategies for this, that would be great as I am new to all this and never realized the silent struggle so many face reflex sympathetic dystrophy syndrome (RSD).

Comment from: tina, 45-54 Female (Patient) Published: April 22

I wonder if anyone else with this condition has had other family members with reflex sympathetic dystrophy syndrome (RSD). My nephew has been diagnosed with it. I suspect I have had this for many years. I had asked my doctor if there is a possibility I have RSD. He said you don"t want that, it is not curable. Besides it only affects one side of the body! He is not very informed or helpful! Sometimes the pain and sweating just drives me nuts.

Comment from: Debbie R, 55-64 Female (Patient) Published: April 14

I am pretty sure I have reflex sympathetic dystrophy syndrome (RSD). I fell and broke my right elbow and tore my rotator cuff last November 2013. My whole right side is affected, plus my speech... at times it is slurred. I went from being a captain on a sailboat and riding my bike 20 miles a day to having to use a walker and only 20 % usage of my right hand. It would be nice to have someone who understands what we are going through nearby. I take Tramadol for pain but it only takes the edge off.

Comment from: Scared, 35-44 Female (Patient) Published: February 24

I was diagnosed with RSDS (reflex sympathetic dystrophy syndrome) in 2001 and have been on many different medications and I have had 2 operations to put in spinal cord stimulator implants. Things have been good until this year and I think that my condition is at its boiling point now. I believe whatever this condition is that I have in my one leg is now in my other leg and none of the previous pain medications are working including the implant.

Comment from: Teech, 55-64 Female (Patient) Published: January 23

I had severe pain following double knee replacement. No one seemed to listen to me, just kept prescribing more physical therapy. Burning, pain, and lack of flexibility are the main symptoms of my reflex sympathetic dystrophy syndrome. I have now received some relief from burning and pain from gabapentin. Now I'm looking forward to not getting worse at least.

Comment from: donna, 65-74 Female (Patient) Published: November 14

I have had RSD for 3 years now and I find staying busy helps a lot. During night time I do not get much sleep. I wear a patch, take a nerve pill and take an Advil at night to help sleep. Sometimes my nerves are shot but you can't let it control you. My left hand doesn't work well but I still have one good one. There are exercises you can do yourself.

Comment from: Still here, 35-44 Female (Patient) Published: October 18

I suffered a crush injury and developed RSD (reflex sympathetic dystrophy) immediately in 2000. I hang in there and do not give in to the idea that the pain is running my life. At that time a lot of my treatment was considered experimental but the majority of the pain did burn out after six plus years and I stopped needing regular treatment.

Comment from: ladybug, 45-54 (Patient) Published: October 15

I have Multiple Sclerosis (MS). I had to have surgery to fix my ankle as I fell and severed some ligaments. About 5 weeks into recovery I was diagnosed with reflex sympathetic dystrophy. I cannot stand the pain. I was already on strong pain medications for the MS but controlling the pain seems to be impossible at this point. The pain management doctor wants to start spine injections, one injection a week over a course of 5 to 6 weeks.

Comment from: renee, 45-54 Female (Patient) Published: April 02

I had a bad trauma to my right ankle and leg and foot. Four surgeries injured my nerves. I could not find a doctor to really look at what was going on. I just knew something was not right. My foot would swell badly, hurt, and my nerves would shake all of the time. Finally, I was able to get on Lyrical, which helped. I still can't wear a shoe. Also, I broke my knee and was told that I have osteoporosis. A neurologist did a nerve study and found I have nerve damage. I have learned to try to live with it, but my quality of life is not the same. I get really depressed and suffer. It took a long time to get a diagnosis. I knew something was not right. I can't stand on it or sit for long periods. I have to elevate it as much as possible. I have stage 3 RSDS. It seems to have a mind of its own – it's always cold, red or blue, and there is no hair or nail growth.

Comment from: bellablue, 55-64 Female (Patient) Published: August 22

Someone asked how long reflex sympathetic dystrophy syndrome (RSD) has been known about. The answer is, during the civil war doctors noticed that men wounded in battle whether they lost a limb or just had severe wounds, would have severe and sometimes uncontrollable pain, even though their wounds were healed. Because of this observation doctors started studying patients with this sort of pain and RSD was discovered.

Comment from: Cher, Female (Patient) Published: January 06

I have reflex sympathetic dystrophy syndrome (RSD) in my right hand. I would like to know if RSD can travel to a different area in my body.

Comment from: ddena, 75 or over Female (Patient) Published: May 01

I developed reflex sympathetic dystrophy syndrome (RSD) in my right hand immediately following reverse shoulder surgery. Now 11 months out after intermittent outpatient treatment, I have minimal hand pain but fingers are weak and deformed and very tight with disturbing sensations.

Comment from: Girl, 19-24 Female (Patient) Published: December 27

I am only 21 years old and was diagnosed at 18 years old after multiple surgeries. The pain is unbearable and I don't know what to do anymore.

Comment from: Nubian, 35-44 Female (Patient) Published: October 22

I am a 44 year old female who has spent several years in military. I have been living with RSD for a while now. I was diagnosed with this sometime after I returned home. It scares me to think about the pain I endure from day to day throughout both of my legs.

Comment from: survivor39, 55-64 Female (Patient) Published: October 08

I had my first right side stellate ganglion nerve block for reflex sympathetic dystrophy syndrome (RSD) in my right hand/wrist. I have had a terrible headache, which started the day of the block and has been continuous for 4 weeks. My doctor says it's not from the nerve block.

Comment from: sawyer, 35-44 Female (Patient) Published: August 12

I have been suffering for a long time and dealing with people saying that 'there is nothing wrong with me hurts me to the bone. I have had 2 surgeries neck and shoulder and fell in a fire 2/3degree skin grafts. I have been having pain and muscle and nerve issues for over 4yrs. I didn't realize it until today. My right foot is always cold and different color than the other. I went to ER Because my knee (skin grafts) I couldn't walk or put pressure on couldn't even touch it. ER doctor misdiagnosed me also. I don't know if it can be reversed but I am on Lyrica 150mg to see if it does anything. I am scared to death I am only 42 and have been suffering for years.

Comment from: 45-54 Published: June 13

I have had spinal fusions and rods in my back due to reflex sympathetic dystrophy. I have only tried gabapentin as a treatment. It doesn't seem to work. It appears that the doctors and physical therapists where I live are unaware of what reflex sympathetic dystrophy is and how to treat it.

Comment from: mary, 45-54 Female (Patient) Published: June 12

i was diagnosed with rsd today. i have been on pain medication as well as a patch which neither have taken my pain away at all. august 1st i had a hip replacement, when i woke up i really woke to a nightmare that i am still not accepting. i have drop foot and no feeling in my left leg from the knee down. i wear a brace since september 2012. i also had the physical therapy to actually well learn to walk. my leg swells i must keep it elevated on a king size pillow but it just flops inward. all this from a hip surgery and now hear i have rsd and no hope for pain relief. i already had my independence taken away as i also have diabetes, copd, neuropathy in soles of feet as well as both hands. depressed doesn't even cover how i feel. the quality of life is gone. i hate my leg its like just dragging an appendage. i really would rather they remove my leg but i know there isn't a dr. that will do that. all this did was add 1 more thing to my list of problems. i have had the nerve blocks in the sympathetic nerve 3 times one week apart from each other. i never had any relief from this horrible pain. i suppose ill just have to live with it. along with the rest. i do not wish what happened to me on anyone as not only is the pain awful but no matter what ive tried nothing changes.

Subscribe to MedicineNet's Arthritis Newsletter

By clicking "Submit," I agree to the MedicineNet Terms and Conditions and Privacy Policy. I also agree to receive emails from MedicineNet and I understand that I may opt out of MedicineNet subscriptions at any time.