Excellent article and helps to illustrate a much asked question of late as the community makes the change-over in terminology from RSDS to CRPS. As I talk to patients from all over the country there are two camps; the first is reluctant to change for fear of losing the little bit of awareness we have finally started to attain; and the second says call it whatever you want, just treat me!
I think the more the medical community understands about our disease, the better chance we have of discovering a successful way to treat it.
Perfect timing of the article, during National RSD/CRPS Awareness Month!
Peace, Keith Orsini, Director, American RSDHope
This is the second time I have had this RSDS orCRPS, what ever anyone wants to call it. The first time I had this, I was in a car accident can't even tell you what happened then. Just know I got out of the car my foot was hurting really bad and I ended up at the ER later that night. I was told it was a twisted ankle, was put in an soft, then an air cast. Was sent to see two other doctors and got the same thing from both of them, they didn't know what was wrong. The last doctor sent me to see a specialist, I saw him once. With one look he knew what was wrong, he put me in a regular cast and told me if it didn't help to call him immediately. Which is exactly what I did, my lower leg got so swollen they had trouble getting it off. Anyway, what it came down to is he knew what it was and took care of me. I had five blocks done and physical therapy for two months and I was fine, back to working hard, dancing, bike riding, and bowling. But, then in 2001 I fell at work and it came back, having already had it I knew right away what had happened to me. The problem, NO DOCTORS would listen to me. So now I can no onger work, I have to use a walker to be able to stand up for any amount of time. WHY don't doctors listen to people? Yes, they are highly educated but once in awhile they should listen. My first doctor that diagosed me told me it was the worse case he had ever seen. I had to go back to him to be disgnosed this last time, he told me they wouldn't be able to put it in remission again it had been to long without the right treatment. I already knew that from the first time, because he had taken time to explain everything to me. Why don't more doctors take the time to learn more about this? I am surprised how many don't know anything about it, and it has been around for a long time. Please educate more doctors of this condition, maybe more people can have it stopped and not go through all of the pain.
Please read the second part of this series called "CRPS: Can it be treated?"
Dr. Christina Lasich, MD
I was diagnosed with RSD/CRPS eight years ago. I would occasionally rollerblade. It started to become painful to even put the rollerblade on my left foot. My primary care physician put me in an air cast for 1 week to no avail. I was finally referred to an orthopedic doctor. I had torn some tendons and ligaments in my foot. I'm not sure how exactly I did this. I never had an accident or anything. I was put in a bootcast for 6-8 weeks during which time my injury healed. Also during this time I began to notice several new symptoms (like severe burning deep in my foot, extreme burning if you touched the skin, blueness of the skin, the feeling as if my foot was in a bucket of ice--yet the skin was of normal temperature). Finally I was diagnosed with RSD and was referred to a pain management doctor who has been treating me for 8 years now. I've been through physical therapy on and off for several years. I've been on a gazillion different medications. I've had sympathetic nerve blocks. I am finally on a treatment plan that seems to be working. By working, I don't mean I'm getting better. I just mean that my pain is not at a level 10 all the time. I am no longer able to hold down a job. I am on disability. I have torn discs in my back, bursitis in my knee and in my hip (due to limping). I am in debt with medical bills. Medicare does cover 80% of my medical expenses but I still have to cover the other 20%. If you were to see me in a crowd, you would never guess anything was wrong with me. What you don't realize is that you are seeing me on a day that my pain level is only about a 4-5 and I'm actually able to leave my house. Those days are few and far between. I try to keep the depression at bay since it only seems to make my pain worse. I try to plan ahead but everything in my life is on a "let's wait and see how I feel that day" basis. I thank God everyday that I'm not as bad off as I was a few years ago, or as bad off as I could be. One of the most important things I can stress is if you have any of the symptoms described in this article see a doctor. The sooner you are diagnosed the better. It's a terrible disease to have but unfortunately I have to live with it so I just take each day as it comes. At the end of every day I say " OK, I've made it through another day". That's all you can do.
I have RSD in my right leg, it having started in my knee after having surgery to repair/reconstruct the torn ACL. Mary (above has stated all my feeling and emotions perfectly and succinctly. When you see me out and about I am able to puch my pain down to a 4-6, when you don't see me the pain level is a 9 -10. My RSD has spread downward from my knee to the top of my foot and upward to mid-thigh. I cannot stand having stiff clothing (like jeans) touch my skin, I cannot wear stockings, I can no longer wear heels, I am always using crutches now. My leg turns brigt reddish purple, ice cold even when I am sitting in the hot sun, There are days a light breeze against my skin is painful. I can no longer work. I am currently going to physical therapy 3 days a week because of the uneven weight distribition has messed up the muscles in my back and just standin cause my pain there. Now I have trouble just standing doing things like preparing food for dinner. Cooking was the one passion I could still do. Like Mary stated, depression seems to make the symptoms worse, but it gets hard to keep from getting depressed when you feel pain 24/7 and you can't do the things you love to do. I am on several medications that help keep the worst pain at bay most of the time. I live my life one day at a time, most activities or events are a 'let's wait and see how I feel' and my friends and family understand this. I know that when I do go to events or affairs that I will pay for it in pain the next 2 days or so but then I have to weigh how much I want to attend ( usually I vote to go - I need the social life, the contact with people). Anyway, what's in a name to me? Whether they call it RSD or CRPS it all still hurts the same.
Thank you for the excellent article. I was particularly interested in the concept of 'mirrored' pain. As a sufferer myself, I found this condition to be alarming! After all, the experience of feeling pins and needles in my left foot when I rub my right thigh is bizarre! Even now, after reading such articles as yours I find it weird.
I look forward to reading the article about the treatment of CRPS. I attend a pain clinic at the moment. If they cannot alleviate my pain then I am facing the amputation of my lower left leg. I know there is the possibility of 'phantom pain' from an amputation but, to be perfectly honest, CRPS has made feel so low I hope they do cut the thing off.
Thanks for the wonderfully informative article. I have such a myriad of symptoms, that I have been diagnosed with everything from fibromyalgia to ascending congenital neuropathy to I don't know what else. I have the color changes in the lower limbs, with much swelling(I eat VERY LITTLE salt), the sensitivity to cold, but not total allodynia. Have burning pains always in right foot that sometimes resonate up the right calf. This is something I might need to point out to my doctor and look at. Thanks for the article.
Oh my goodness!! Someone has it!! This is by far the BEST and MOST TRUE definition of RSD, that I have seen to date. I still say RSD because I have had it since 1987, and my nervous system IS INVOLVED. I love the explanation about the brain and the pain signals. That is so true and the first time I have seen it written that way. I can bump my knee, and my arm, where the rsd is, will hurt. I can hit my leg and my face hurts. I would like to know more about the nervous system part, the fight or flight response. My fight or flight response is bad, and I HAVE had issues with adrenlaline.
WOW. Again, I have had RSD/CRPS since 1987, diagnosed in 2004 and have been researching almost everyday and this is the best I have seen.
THanks
Sabrina Porter
Thank you so much for your feedback. If you enjoyed this article, then you should definitely read a book called Explain Pain. This book can continue to expand your knowledge about pain. With more knowledge and understanding, the pain experience is not so scary.
Dr. Christina Lasich, MD
l've had 4 Spinal injections and am going to try again.l Can
not tell you they have helped much but am always willing to attempt to stop this pain. The stimulator doesn't help and l want it removed.My doc did not want to remove it but we tried everything.L used to be one of those people who would just buck up and go on. wow have l leared a lesson.
I was diagnosed with RSD back in 2004 and since then have gone through a myriad of doctors and clinics. Most of the doctors had not even heard of it. After a long and winding road of blocks, pain medication (witch only took the edge off), and had even tried the new electronic leads implanted in my back I still am no closer to being out of pain than when I started. The thing with the electronic leads not working is after 3 weeks it started moving when I would. It would then send a jolt of electricity to the wrong part of my body!
The doctors then tried to pass it off as clinical depression, no kidding I hurt all the time and how can I not be depressed. I ended up having 13 ECT treatments only to be sent back to the clinics. I feel 'unfixable'. Another thing I feel about this disease/syndrome is that it is invisable. I have had all 4 symptoms described in the article and the doctors just ignored them and made me feel like a 'seeker' of pain meds, even though I am 50 years old. If just one doctor had come down with this syndrome (someting I wish on no one) I feel like they would be more understanding when I tell them my pain level is at a 6-7. Fortunately I have been refered to a very good pain clinic, so I hear, at UNC-Chapel Hill. I hope to be able to post good results in the near future.
T.J.
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How do you go about getting tested for this? What tests are performed? I have Fibromyalgia, but alot of the symptoms described are what I go through as well.
I went to the Pain Managment Clinic @ Beth Israel just last Tuesday. I've had chronic, severe pain in mant areas, resistant to narcotics (I'm on 200mcg/hr. Fentanyl w/ morphine 15mg. every 4 hr. as needed for 'breakthrough pain). I still have #6 to 7 pain (pain scale) daily along with numbness, tingling, clumsey hands, tremor off and on, etc,etc- I thought my pain came from my very severe lumbar spinal stenosis(bone on bone, nerve entrapment, etc.) as well as my moderatly severe cervical spinal stenosis{my upper body and arm/hand sx.). I was also finally diagnosed after 6 yrs. of symptoms w/ MS based on a finally positive brain MRI. I'd tested pos. for optic neuritis two yrs. ago, but aparently that was not enough for a 'definitive' diagnosis. All this time I've suffered in medical limbo-even been acused (nicely) of it 'all being in my head", drug-seeking is another one sometimes whispered but not said out loud in my presence...Oh well. I never wanted any of it- the drugs, the doctors...I just want a nice quiet life with my husband and kids. All this pain, disability, testing, hospitals,etc have really gotten in the way. Sometimes I feel hopeless, dismal and bleak. That lasts a day or two. Then I remember that I'm not my body but am a higher being who inhabits this gift of a body...I look to those things that are still good, pull myself back to NOW. I quit projecting into the future, the 'what if this or that happens, and go on to the next round. The next round for me is ketamine infusion therapy and a NEW diagnosis of CRPS. The resident says I hurt 'all over', that just a light touch here or there hurts me-I remind her that my belly doesn't hurt and that there are spots here there and elsewhere that don't hurt. They smile and nod. The attending says it's good I see it that way...Oh well...
Thanks for your article. i am a little depressed right now - i have a second repeat of CRPS following a ski accident with a tibial fracture. it was successfully treated the first time following an ankle sprain with 3 symathetic blocks and neurontin. Now after 4 blocks and neurontin the CRPS has spread to the uninjured leg and worse. I wonder if they can treat it this time? Any suggestions? Thanks Angie
My first suggestion is to stay connected and do something you enjoy everyday. My next suggestion is to read my article about treating CRPS and the book called "Explain Pain" by David Butler. Beyond the world of needles and surgery lies the brain, the source the painful tune. The brain can change its tune. Take it on.
Dr. Christina Lasich, MD
I have also been diagnost with CRPS. I also someimes feel that they are whispering that I am a 'seeker'. Pain is invisable so they have no idea what we go through on a daily basis. The most recent doctor at a pain clinic in Chapel Hill, nc, knew about CRPS. I was astounded. She was the first doctor with a lot of knowledge about it. I go back again for a urine test in about 2 weeks. They do one every 2 months. Which I think is a waste of time. I know what CRPS is to answer your question about what is it....it is pain in my foot 24/7.