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.
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.
Even though I don't have it full body yet and know how blessed I am, the entire right side of my body feels this burning that can become so intense and even causing worsening pain down to the bone.
Has your doctor said that you have RSD in/on your face also? If so, not everyone that is full body has it in the face and I can only imagine how painful that is.
I do know that my right leg doesn't get the circulation it used to and that is part of the disease and why you may feel so cold. Even in the summer I don't wear shorts because of the pain even a slight breeze can cause.
I was on crutches for over 2yrs and have learned to cope and even though I can say that now, I still have days like today where I have over done it and started crying because I was in so much pain.
I am treated by a pain management doctor who has helped me greatly.
I fear most medications and have remained on the same dosage of pain meds for almost 9 of almost 11yrs.
I refused to continue Neurontin or any "epileptic drug" after finding out that not only is it not FDA approved to treat pain but doctors put people like us on such high doses that it causes more euphoria than the pain medications ever did and I'm a fan of using as less meds as possible in general; especially since I got this after a motor vehicle accident when I was only 31yrs old.
I have also refused a Spinal Cord Stimulator which is basically an Internal TENS unit. Most RSD patients I've spoken to it hasn't helped and they had it removed or they had so many problems with the leads and wires (as surgery is needed every 2 or 3yrs to replace these leads and wires which grow into the inner tissue of the body.
Please post a reply and I would like to discuss this with you privately if possible as just another woman with what is called; "The most painful Chronic Pain Disease known to man".
I was recently in a clinical trial study and feel that over the years I've had to educate myself on this disease as I've found even doctors and nurses in the ER and other practices don't even know what RSD is even though it has been known since the Civil War Era.
If there are any questions you have or answers I can give to you, I will try to help you as much as possible.
In even this disease we are all different but the pain and burning we know all too well unfortunately.
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.
Get a good Neurologist, Physical Therapist, Counselor that specializes in chronic pain, and last but not least a Pain Management Physician that is knowledeable with the condition, one who spends more than 5-10 minutes in the room with you, one that cares enough to talk in detail with you about the condition and who is willing to take any necessary approach to controling your pain and your ability to function in society. I had to go outside of my workmans comp bullcrap and pay out of pocket for this type of treatment, but at least I get help now and he truly cares about me.
Another thing that I've tried and that's helped my movement and a little bit with the pain is this therapy my PT suggested. It's called laterality training read about it. Apparently RSD causes your brain to retrain itself so you hold your appendage a different way, spasms get worse, etc... this is suppose to help you to properly train your central cortex. It's worth giving it a try, instead of buying the photo cards just cut out the areas affected from a magazine and use them that's what I did instead of paying for the cards.
Good luck and God Bless you!
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.
Does your feet and legs jump up from your nerves by there selves? I have had little to no comfort at night trying to sleep and it is getting worse and it seems like the doctor is running out of option and it's almost feels like I'm going crazy when I know I'm by far crazy. I hope this helps you and I'm always looking for more ways to be relaxed, or diffrent meds to try as I already tried quite a few. Please respond if you have anything to add.
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.
All that said, I will be setting up an appointment to get the ketamine treatment in Florida. The Florida location can get the ketamine dose up higher than the regular hospitals. The florida location is considered a research center. That is why it can get the ketamine doses higher. Check out the Florida website rsdfoundation.org and look at the videos etc... There is some one here in my county that had the rsd lesions etc... and was in worse condition than I am who had the ketamine treatment in Florida. Check out the website and let me know what your thoughts are. I will keep you in my prayers. RSD hurts! No question about it.
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.
i have had 3 rounds of nerve blocks didn't work, i had surgery didn't help made it worse. everynight i go to bed and don't want to wake up ,knowing what my day will be like. to get through each day without giving up is some kind of mirical. this disease is number one in suicide deaths and i can really understand why. pretty much there is no life beyond rsd. its really sad, and very lonely. i have to just hope i get through just one minute adfay. i feel for anyone who has this, and my prayers are with you all.
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