I have have had CRPS II since 8/07. I have been dx full body for a yr., but my pain is becoming more intense than when I was diagnosed. I started with a sunpoison type of burning. Now it is a more solid burn, sometimes with a crushed feeling, but I am always so cold, even in my head and face.I can only tolerate 100% cotton on my skin and wear some inside out because of the seams. Does ANYONE here have RDS/CRPS to this extent? I really need to talk to you.
RSD/CRPS Progressing?
- Asked
- 12 Apr 2010 by lmintz66
- Updated
- 5 May 2012
- Topics
- pain, reflex sympathetic dystrophy syndrome
Responses (10)
Oh sweetie, I am so sorry to hear of your condition. I just recently had a bad bought of poison ivy. Went to the doc and he put me on the 13 day pack of steriods. It is working great. My itching has stopped and my blisters are going away and it's only been since Friday. I too like 100% cotton. What does your doctor say regarding your condition? I wish I could be of more help but I really do not know much about RDS/CRPS. Maybe someone will share there experience as I am sure you are not the only one with this condition.. Good luck. Wish I could be of more help. kimmie1
Maybe either me or a good friend could help as we both have RSD aka CRPS. I've had it for almost 11yrs and my friend much less time but she is the one who has it full body but mine is on my right side and spread a long time ago but is now spreading up into my back.
We both got it in two very different ways. I met her online at a medical website where she had posted a question a few years ago and I was even fortunate enough to fly to CA to meet her all the way from IN (where I live).
The burning does change over time and so does the pain.
I have always tried to help others cope with this disease as it took me so many years of my own life to even do so. The pain and how it changes your entire life is devastating.
I can't stand a breeze on any part that I have RSD. I wear long PJ's and socks that aren't tight but cozy. Even with the burn I have to have socks on at all times.
Sorry to hear your pain is so hard to control. My heart goes out to you as does it for so many others that suffer from this horrible condition.
My RSD started in my right shoulder area, it spread through my right arm, scapula, neck, jaw, my diaphram on the right side, cervical and thorasic spine and now my right ankle, foot, and leg up to my knee. I also have the buring pain in my left pinkie and ring fingers and it's intermittent in my left knee. So it looks like it's spreading everywhere... mine is moving fast. It's done all of this since last August.
Hi; As one of the more ignorant of the people in these groups , may I ask... what is RSD... what is CRPS?? Sacosam
i have rsd for 6 years taken every med. my brother has had it for 7 years all impact injurys and crush injury. sometimes it goes away sometime it doesnt we are all on heavy paln meds. my brotheris on the patch and many other paln meds.. i am on oxicontin. try to take a warm bath not hot this does help and try to keep your mind off it. i play poker online this helps because i am on dissabilty because of this horrible pain. it is all over me but mostly in my right foot which where the crush injury started. there is no help hopfully it will burn it self out which can happen. i hope that this helps you but probbaly wont sorry.
I know exactly what your feeling... I was diagnosis with CRPS II and have had it for about 1 1/2 years. It all started with a crushed foot injury at work. I have burning sensation that lasts the whole day instead of through out the day and it seems like I'mbeing set on fire under my skin. I don't ever wear anything on my right foot because it inflames four time the size for the next week and always wearing jogging pant's because of the loose fitting. My nerves are constantly mis-firing and and after surgery it feels like my foot is going to split in half. I always try to wear something soft so I don't feel as much pain and can't use a blanket covering my right leg and foot at night when I sleep.
I have had crps/rsd since July 2010. It started due to a fall I took while running in flip flop like shoes. I had a fracture of the 5th metatarsal on left foot, bilateral ankle sprains, deep and large cut on right knee, injury to both hands and wrists as well as injury up the left arm and left shoulder. RSD initially showed up in left foot and included left leg past thigh area and right foot up through leg. By Dec. 2010 rsd had spread to both hands and arms. The rsd spread to the right shoulder as well. Sept. 2011 rsd had spread up my back, into my chin, lips, toungue and eyes. I can't stand anything except for cotton or washed fleece on my skin. I have the cold limbs as well as the burning pain. The burning pain is in all areas of my rsd. Makes it hard to fall asleep. I also have the muscle atrophy through out my entire body and muscle weakness. There are signs that the rsd is affecting my immune system.
I now have rsd in my esophagus. Bummer. I think it is because of the damage my acid reflux is causing.
I use an electric blanket throw to help with the cold and the pain. The heated blanket throw gets much hotter than the electric blankets. At least the one I have does. I even take it with me to the doctors office. I take one fleece throw to put on the bench/table to lay on, put the heated blanket throw on top of me and put the other fleece blanket throw on top of that. The doctor was very respective of my need to be warm and minimized me being out from under the blanket during her examination. Does fleece feel ok on your skin? If so, I would go to the local thrift stores and buy up a bunch of fleece clothing. I can only wear fleece or soft cotton myself. Due to the neuropathic pain, I can't do buttons, so I went to the thrift store and found fleece jackets etc.. that zip up.
What meds are you on for your rsd? Feel free to friend me if you would like to talk further. Blessings & prayers coming your way, rollerskater Here's hoping for a pain free day.
i was diagnosed 11yrs ago the pain is incredible i constantly have pain in both hands and feet also i was told ihave a type that moves all over my body but always with the hands and feet.sometimes it feels like i broke a foot or my hand ive had my feet sweel so big icant put on my shoes.ive spent mos. at a time bedridden.sometimes alot of the time just the sheets on my bed touching my skin will hurt so bad i feel like i cant take it anymore.right now im having a real bad time wiyh the pain i could scream so i take sometimes one minute at a time rather than one day at a time.im glad i just found this site
i was diagnosed with rsd 2 yrs. ago after having elbow surgery and was getting better after weeks of therapy, so i was lucky to have a physical therapist that knew somethiong about it and had the dr. see me. i had a 3 phase bone scan and the results were very clear. it started from my elbow to my hand and fingers. now its my whole rt. side. i can no longer use my rt. arm i was rt. handed. i learned quick how much we take for granted the little things we do like tieing shoes, brushing your teeth picking up a spoon, all the everyday things that we do without thinking we just do, then when we loose function and we'er left to depend on others it bring you down. i know theres 5 phases and you can be in more then one. right know my hand swells turns purple because its so cold my foot points out and i can't lift my leg i continue to fall all the time. people will stare with the way i walk. i have been on so many meds. that don't work.

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Thanks guys. Actually I am part of a university study. I seem to be the only one of 19 to continue to have agressive progression. Some are Pain free after 2 yrs of treatment, keeping in mind they were diagnosed early. I was not dx until all four limbs were involved. THANKS FOR YOUR ADVICE PETE!! It was the perfect answer. RSD/CRPS is a disease/syndrome in which little is known even though it was named during the civil war as causalgia. Thanks again Pete!
Thanks for pointing out NIH, specifically who is doing research on my RSD. I find that on this site, ofteneverything is an abstract only. Then, a charge for the article full text (maybe i am wrong about the charge.) Abstracts, they drive me crazy. Can you recommend any other databases? I am going to college, so i can get into some. what is your favorite?