Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Symptoms

Question:

What symptoms have you experienced with reflex sympathetic dystrophy syndrome? Submit Your Comment

Comment from: Judy, 55-64 Female (Patient) Published: October 04

I have had reflex sympathetic dystrophy syndrome (RSDS) since1985, not so bad at first. I have had every kind of treatment that is available. I got a severe infection from the morphine pump. Now I take morphine orally and the hospital will not give me the amount of pain medicines that I need. They say that it will pass. My whole left side of my body is on fire at night and it throbs. It all started in my left hand. I am trying hypnotherapy again.

Comment from: DawnM, 45-54 Female (Patient) Published: June 16

I sincerely empathize with all of you who suffer from this debilitating disease. I have been diagnosed with reflex sympathetic dystrophy syndrome (RSD) by three specialists but my new doctors don't believe it. He said I don't have the swelling or shiny skin. A pain specialist that my primary referred me to says she'd be shocked if I didn't have it. I have severe pain after 6 surgeries, three of them fusions. Nobody has ever said I need a sympathetic block, just nerve blocks and prednisone injections. It is the most disabling pain ever. I would give birth naturally once a day over this pain, at least you get a break in between contractions. Wishes to all fellow sufferers of chronic pain. I would not wish it on anyone, maybe for a few minutes just to give them some understanding of this invisible disease.

Comment from: 45-54 Male (Patient) Published: January 05

I was diagnosed with reflex sympathetic dystrophy syndrome in 2004 after I sliced my tendons in my hand. Sometimes wish I could chop it off, it would be easier. My fingers are locked and I cannot open my hand. I get swelling, pain, pins and needles, hot cold pins and needles, winter being the worst time. Now after 11 years they think they can open my hand with physiotherapy, when they not sure it will work, and I have more pain.

Comment from: Survivor, 55-64 Female (Patient) Published: December 31

I have had reflex sympathetic dystrophy syndrome (RSD) for well over 12 years. Mine started with a total knee replacement. I felt like I was going crazy, I couldn't stand anything to touch my knee and the pain felt like my knee was constantly being broke (I try to describe the pain as when you break a bone, that's the pain I constantly have). I was finally referred to a wonder pain specialist. He assured me I wasn't crazy and he would help me. After several months of medication, blocks and everything else, he implanted a pain pump. The relief was like day and night. It doesn't take away all the pain, but I can live again. I take pain medication for the bleed-over pain but I can live with it. I didn't go into all the months before I went to the pain clinic because they were a blur. I was so overmedicated I really can't remember them other than they were horrible. I also had to quit work and go on disability because of this disease. I tell everyone that asks, if I hadn't gone to the pain clinic when I did I probably wouldn't be here today. All I can say is don't give up. There are doctors who do care and I know how frustrating it is to try and get doctors to listen to you. You just have to keep trying until you find the right doctor.

Comment from: Ozzy, 55-64 Male (Patient) Published: July 31

I have been RSD (reflex sympathetic dystrophy syndrome) diagnosed for many years now; I did suffer in the early years with what was thought to be RSI (repetitive strain injury. After many years of being passed from pillar to post and visiting loads of specialists I was eventually told that RSD was the most likely cause of my severe pains that affect both upper limbs and occasionally my lower legs. I have varying degrees of burning, stinging, pulsing and what I call deep nerve type pains in the upper limbs. I have blotchy red/purple hands at times. Cold weather, touching cold items or just walking down the freezer isle of a supermarket causes greatly enhanced upper limb pains. At times I do not like being touched due to the tenderness of the limbs. I have tried many, many types of painkillers and currently use Fentanyl; it does help but breakthrough pain is a real problem. I no longer work as the daily episodes of pain and the action of just using my limbs exacerbates issues; at times pain is very bad but after years of fighting I have grown to just accept my condition and now outwardly show little evidence of what is actually going on.

Comment from: Bek6336, 35-44 Female (Patient) Published: March 01

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) about 4 years ago. I worked in pain for 4 years at my job I loved for 24 years. I lost my job, friends, and my partner of 7 years. Not a lot of people know of this disease and they really don't believe that someone can be in pain all the time. I stopped telling people because they don't understand, even doctors are not educated in this disease which is discouraging. People and doctors need to know more about RSD, I have had doctors who don't believe; try working a physical job while on pain killers. Now I am trying for disability which I hope goes well.

Comment from: barbara, 55-64 Female (Patient) Published: April 16

I initially suffered from reflex sympathetic dystrophy syndrome (RSD) in 1988 when I had a car accident. I had a broken sternum and left leg injuries. Shortly thereafter, I had extreme skin sensitivity along with excruciating elbow pain. My orthopedic surgeon tried everything; last ditch effort was to cast my left arm to isolate the left elbow. When the cast was being cut off 8 weeks later, my pain level was beyond words. At that moment, my orthopedic doctor said to his nurse, 'my goodness, she has RSD.' I saw a renowned doctor and within 2 years, as the doctor put it 'sometimes RSD just burns itself out,' I was clear of it. I am now in the grips of it again with my left arm. Hoping to find some relief.

Comment from: Survivor65, 55-64 Female (Patient) Published: January 28

I had total knee replacement in September 2013. After 4 to 6 weeks of fairly normal recovery, pain began increasing to where I could not handle even clothing touching the knee. The surgeon treated me as a malingerer just wanting more hydrocodone. Finally I went to my internal medicine doctor who is great. He said it was reflex sympathetic dystrophy syndrome, gave me gabapentin and symptoms began to ease after a few weeks and were gone within 6 months. It appears I am extremely lucky to have a great internal medicine doctor and no long term effects. Suggest you listen to your body, not just one doctor, and seek other opinions.

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

Ten years ago I fell and fractured one of those little bones in my wrist. The orthopedist went in to repair it because it was preventing me from gardening and playing the piano for any length of time. Five weeks into my recovery I started having insomnia and my hand swelled, turned purple, started burning and felt like it had glass in it. My doctor knew immediately what it was, reflex sympathetic dystrophy syndrome (RSD), and sent me to physical therapy and to a physiatrist to help. We tried many medications. Most did nothing, but through trial and error I am now able to get about 4 hours a day where I can do things that aren't too painful. I take, 20 mg Oxycontin CR a day, trazodone to sleep, and Effexor for depression. My pain specialist was a brain surgeon, he helped me to understand that to control your pain for quality of life is healthier for your brain and life than to suffer needlessly. You must find a doctor that will work with you.

Comment from: painfulone, 45-54 Female (Patient) Published: October 21

I got hurt at work, lifting. Initially my wrist, hand, and forearm strain turned into a carpal tunnel injury which led to surgery. I have severe burning pain like the worst sunburn on the inside of the arm, swelling, discoloration, etc. I am unable to touch it. Ganglion blocks help my reflex sympathetic dystrophy syndrome (RSD) till they wear off, I am getting a spinal cord stimulator soon. I hope it helps me, I hate blocks! I can't stand any narcotics, I've got an allergy to them. So wish me luck please, it's moved up into my shoulder and jaw. Sometimes I can't open my mouth.

Comment from: norma, 65-74 Female (Patient) Published: July 31

I have had reflex sympathetic dystrophy syndrome since 2001 and self-diagnosed. For a year no one would say why I had excruciating pain which started in my lower left leg and soon spread to both legs and feet. I was depressed and was prescribed every painkiller which did not work until my doctor prescribed a painkiller which did, but unfortunately was taken off the market. I've had acupuncture, reflexology, epidural, none of which worked. I am now pain free in my legs mostly but can still see nerves firing off in the muscle. However, I am now suffering from severe pain in my groin and back on the right side. As I am taking morphine, gabapentin and amitriptyline, I thought my pain would be under control. My love and sympathy to all sufferers.

Comment from: neves777, 55-64 Male (Patient) Published: July 01

I had an injury causing reflex sympathetic dystrophy and I had a tarsal tunnel surgery to my left foot. The pain is worse than ever. That was in 2012 a 2000 pound metal plate jammed me in my leg, I had no breaks of the bone or anything but my vessels/veins/muscles/tendons/etc. were injured tremendously. I cannot feel my toes on up to my knee and have numbness up through my leg into my hip and into my back. My left side is pretty much paralyzed. If I'm in my wheelchair for too long it's very hard to get up; I get up and stand for a minute and start to walk on one foot from my crutches. The pain is unbearable at times. The extreme of hot and cold is off the charts. I hope this helped someone on this page.

Comment from: LoriCBP1, 35-44 Female (Patient) Published: June 16

I was just diagnosed with reflex sympathetic dystrophy syndrome/complex regional pain syndrome (RSD/CRPS) in May 2014. I also have fibromyalgia, arthritis and bipolar disorder with severe anxiety. I am in tremendous amounts of pain. The physiotherapy doesn't seem to be helping. There is a constant tingle in my left hand, contraction, spasms, and hot and cold issues. It turns really red sometimes and sometimes blue. It throbs a lot. I've lost a lot of function in my hand and can no longer dress myself. Most all tasks are now difficult.

Comment from: Lizzy, 55-64 Female (Patient) Published: May 14

I had carpal tunnel surgery, and next day I had severe burning and throbbing. Pain like I have never had. When I walked in the office they did not recognize me for the wretched look on my face. I was throwing myself against the wall with burning pain. It is reflex sympathetic dystrophy syndrome (RSD) the doctor said, and to get to a pain management doctor immediately. I had several blocks and lots of medications and a tremendous amount of hand therapy. Roughly six months of my life was spent dealing with this pain. The pain is gone now but I can feel electricity in fingers when they rub together. I was told to have as little surgery as possible, by a famous sports doctor.

Comment from: sweetpea62308, 45-54 Female (Patient) Published: January 21

I was diagnosed with reflex sympathetic dystrophy syndrome in 2002 after an injury to my left shoulder. I finally found a wonderful doctor who has me on pain management. The weather plays a big part of how I am going to be for the day. I have severe twitching, and my arm turns blue, I cannot tolerate cold anything. I have to literally dress as warm as possible, even in the summer. I now am pretty sure it has spread to my lower limb, because now that turns purple and feels extremely cold. In 2006 the same doctor diagnosed me with multiple sclerosis, but refused to put me on medication for it. I have literally gone to 10 doctors for help, they don't even know what RSD is. I am so frustrated. My blood pressure is so high due to the pain, I also haven't seen anything on the symptoms to say that it could spread, but I am here to say it does. I also have fibromyalgia.

Comment from: Niki1, 25-34 Female (Patient) Published: October 08

I have had reflex sympathetic dystrophy syndrome (RSD) since 2004 which started from foot surgery but the doctor didn't diagnose it and instead did more surgeries thinking it would help but the third was the beginning of the end. It spread full body and internally within 3 weeks and then within 3 months my feet, knees, hands were all curled and locked. I couldn't swallow due to my nerve to swallow had shut down so I needed feeding tubes. Then my bladder failed. It took them 5 months when it went full body before it was diagnosed. I saw 56 doctors in 3 states in 6 hospitals. All think I was crazy and suggested I just go into a mental ward, including family that thought the same. I was hospitalized in my home state before they AirEvac'd me to the Cleveland Clinic. Since, I have seen 212 doctors in 13 states and have tried every treatment. Ketamine was the one to help get me walking again. I still am hospitalized every few weeks due to flares. This monster just came in and ripped my life apart.

Comment from: rhonda, 55-64 Female (Patient) Published: January 21

I have reflex sympathetic dystrophy syndrome (RSD) and I would wake up with tingling in my hand and wonder what was happening. It got worse every day where I couldn't take the pain any more so I went to the doctor and they sent me to pain management. They put me on Norco-amitriptyline-clonidine but nothing takes the pain away to where you can have a normal life. Pain rules my life; I try not to think about it but your body gets so tired of living this way you don't have a way out. Most days I want someone to just cut my hand off. And it travels to other parts too. I've found out it is starting in my foot, all because I fell and hurt my arm. So yes it is a nightmare living with this but they say don't give up hope of them finding a cure so that's what I do, but it isn't easy. So people out there, I know what you are going through.

Comment from: Puglady2cute, 65-74 Female (Patient) Published: August 05

I have had reflex sympathetic dystrophy syndrome for over 10 years and no improvements. Believe me I have tried all treatments including acupuncture, and I am a bleeder (not a pretty picture). Also I have Raynaud's disease to add to this. I am now taking hydrocodone 3 times a day and gabapentin 3 time a day. My newest problem is I have tendinitis of the Achilles tendon (same foot). So the pain was constant and had to take extra hydrocodone now, that I am running short. The doctor said I've got to wait till next appointment. I just wish they could understand this is not a makeup pain. Between severe arthritis and this I am in pain non-stop.

Comment from: annie, 55-64 Female (Patient) Published: July 31

I have had reflex sympathetic dystrophy syndrome (RSD) for 12 years, it has slowly progressed especially on right side from foot to face. It causes eye pain and light flashes and increase of migraines.

Comment from: bunkibil, 45-54 Female (Caregiver) Published: July 14

My twin passes out from the, because the pain is so unbearable, this reflex sympathetic dystrophy syndrome has been going on for almost 5 years. Pain pills aren't really working and she is always trying to get herself off the pain medications. I want to help her so bad and find her the right doctors!

Comment from: KBM713, 45-54 Female (Caregiver) Published: May 30

My mother was diagnosed with reflex sympathetic dystrophy syndrome (RSD) in 1992 after falling down the stairs and breaking her foot. One of the main nerves died in her foot apparently, which caused the RSD. Or that is what we were told. I was only about 4 years old when this happened. It affected my mother tremendously. I did not have a normal childhood because my mother was always in so much pain. Back then they did not have as much resources as they do now, so the doctor's easy fix was to just give her lots of pain medicine. Once her body got used to that, she had to take more and more. Eventually she was so dependent on her pain medicine, she would go through withdrawals when she didn"t have any for more than a few hours. It sadly changed her as a person. She"s been gone now for 6 years and I miss her tremendously, but I know now she is not in pain anymore. She was only 54 when she passed away. Basically what I am trying to say is I am sorry for anyone who has to deal with this pain on a daily basis, I saw it growing up basically my whole life. I couldn"t even cuddle with my mom because her skin was on fire 24/7, and any movement of the bed hurt her, and put her in tears. (Even with her pain medicine.) I hope they find relief soon for this terrible disease.

Comment from: in constantpain, 45-54 Female (Patient) Published: April 16

I am always in pain, diagnosed with causalgia in 2011. However no doctor would listen until 2015. Now I am stuck with a huge mess 2 surgeries later. It is ruining my life.

Comment from: Kim, 35-44 Female (Patient) Published: August 05

I know what your going thought Mary I have the same problem but I have it in my left foot. I have had many things done over the last 14mths I don't see a light at the end of the tunnel I have had casts on Botox I lost count hydrotherapy physio now they are going to try Bio electric therapy. No amount of medication seems to hold the pain from patches to pills. I have also had nerve blocks which are good until it wears off. I also suffer from depression due to it I find it really hard to care for my family having to rely on hubby more.

Comment from: Never Give Up, 55-64 Male (Patient) Published: August 01

I found regular visits to my chiropractor work better than any meds or conventional treatment. My RSD doesn't slow me down any more.

Comment from: YogiLyn, 35-44 Female (Patient) Published: July 10

I have a question for everyone. My father was diagnosed when I was little with RSD. He has found no relief. I also have other family members on his side that have been diagnosed with this. My problem is as follows.... In 2001 I had surgery to remove disc at L5, then in Dec 2011 I had neck surgery at C5-6 to shave bulging disc around nerve. I reinjured my neck about 3 months after surgery. Actually it was more pulled and strained muscles (so they say). Now almost a year later I have extreme pain in my lowerback, right hip and leg. It feels cold, tingly and hurts like crazy. My neck and left arm and fingers also tingle and hurt. I have suggested to doctors about RSD due to family history, but they continually tell me "oh that's not what this is". Can anyone please suggest what I need to do next?

Comment from: 45-54 (Patient) Published: July 08

I have Carpel Tunnel Syndrome and had surgery on both hands. I also was diagnosed with Fibromyalgia 7 yrs ago which is am in constant pain. Now yr 2013 my Dr informed me that I have RSD. Life is hard enough without all pain I already had and now this. If I wasnt already depressed enough to advise me of RSD. I tried everything toget rid of this pain. My next step is a pain clinic. I hope there is something that can be done & soon.

Comment from: chocoluvr, 45-54 Female (Patient) Published: June 17

I fell down stairs and hit my ulna nerve in my left arm, I was taken to the ER where I only received xrays and a splint w/ no instructions on how to take care of my arm. Several weeks later I went to urgent care as I was worsening, where I was refered to ortho Dr again with no directions. The orto Dr spent 5 min with me gave me med and told me not to work and rest my arm. It took a 3rd visit and the PA sent me for a nerve test that was only tested in 3 places not 10 or more as suggested. The ortho Dr has upped my pain meds tells me she doesn't need to see my hand just need to go for only pain management. I have no insurance and have now gradually lost the use of my hand within 2 months of injury, and don't know what to do as the pain feels like the bones will break when my fingers contract

Comment from: 45-54 Female (Patient) Published: May 23

I have had RSD since 2001 after carpal tunnel surgery. It took a year for doctors to diagnose me. It's hard to find a doctor who will treat or even know what RSD is. Although the past few years have been better for me since I've been on Lyrica, it does help. But it takes time. I've noticed there is a fine line with RSD and pain; doing too much causes lots of pain, and doing too little causes pain. I've noticed if I take my mind off my pain by doing something, it also helps. Researching about RSD has also helped. I recommend joining an online support group and finding the right doctor – one who listens.

Comment from: Mesh, 45-54 Female (Patient) Published: April 26

I had surgery in December to remove a Haglund's deformity and repair my Achilles tendon. My foot has not been right since: it swells, turns red to purple, burns and is hot to the touch. Today, my doctor told me that although rare, he believes I am suffering with reflex sympathetic dystrophy. I go to a specialist from next week. Hopefully, they will be able to help relieve some of this pain.

Comment from: lbamburg, 55-64 Female (Patient) Published: April 09

I was diagnosed with RSD about a month after my left leg was amputated below the knee in September 2010. I was in pain before the amputation, as my left foot was dying from a lack of circulation due to the sepsis I had managed to survive before. I have been receiving pain management as treatment ever since the diagnoses, but now it seems there is something happening that is making it very difficult to get the medication I need. My doctor wrote the prescription, but I can't find a pharmacy with any oxycodone in stock. This is a first for me.

Comment from: buck360, 55-64 Male (Patient) Published: March 15

I suffered a very severe crushing injury in an industrial accident in 1982. I moved to Tennessee so that I could be treated at Vanderbilt University Medical Center. While receiving treatment, I was diagnosed with Reflex Sympathetic Dystrophy (RSD) Syndrome. I've had all the treatments except surgery, which I was advised not to have due to the high risk. I was on pain maintenance for about 26 years. My doctor died and I haven't been able to find another doctor who is willing to treat me because of new laws concerning narcotics. I was on 10 mg of Percocet, 10 mg of Valium and 350 mg of SOMA—each 4 pills daily. This maintenance helped a lot. I still suffer from hypersensitivity in both feet and legs, along with sweating, even though my feet are as cold as ice. I live with a pain level of about 7 on a good day; off the scale on other days. As far as I have been able to tell, there is no cure. It has cost me a marriage and the ability to work. It is no fun. To say it is life changing is an understatement. Good luck to anyone who unfortunately has RSD.

Comment from: Jeff, 55-64 Male (Patient) Published: March 12

I hav had rsd for about 30yrs.I have had it go from pain to severe pain and now loss of movementin my toes and slowing effecting my foot.I have been to many doctors and still get checked up though nothing is getting better.I have had just about every test done known to man.If you have it my advice is to see a pain specialist.The electo tests made mine worse and others better.I went through the beta blockers along the sping and they worked for some time but no longer work for me.I have pain everyday and take pills for the pain and swelling that make it some what easier to deal with.mine I will have for life and have learned to deal with it.Remember to seek helpfrom your doctor or a pain clinic and yours could possibly be treated.Dont put it off.

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