CRPS Question: Itching
Hello I was officially diagnosed last week with CRPS after 16 months of being sent back and forth between Podiatry, Ortho, and Neuro doctors.
Sept 2017 I fell and had an avulsion fracture. This didn’t heal and I was in a boot for 11 months before I finally had surgery Aug 2018. Surgery fixed the FX and ligaments but I never regained dorseflextion of my ankle. After EMG and MRI all coming back fine, they finally called it CRPS. My PT has been telling me I have CRPS since Feb 2018 but my drs wouldn’t officially diagnose.
Before surgery I didn’t have any nerve related pain. Just no dorseflextion, severe aching pain, and extreme swelling. After surgery all of the nerve pain started and has continued. I now also get muscle spasms, and electrical shocks through out my entire body, and I have a constant buzzing feeling in my injured foot and leg.
Neuro put me on Lyrica which was helping once I was at 600mg, taking it 3 times a day. But 6 weeks into taking the meds I started itching all over my body and after prednisone and the itch coming back they said I was allergic to the meds. I was weaned off the meds in a week, and was put on Trileptal. 600mg, taking it twice a day.
I’m a week into the meds and I’m still itching all over. It had slowed down and almost stopped when I was weaned off the Lyrica and then off it for 3 days. And now that I’m 7 days on these new meds I want to rip my skin off again. But tonight while it’s getting worse it feels more like tingling itchy then actually itching. On top of the meds not helping with the pain. I’m going to call the dr tomorrow but he didn’t want to listen to me about the itch and sent me to my PCP the first time. I feel like this is nerve related but he insisted it wasn’t.
So my question is has anyone else been itching cause of the CRPS. Could this be a symptom of that or is it truly due to the meds and if so where do I even go from here. I feel like I’m losing my mind. I have black and blues all over my body because I’m scratching so much.
Please help..
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FYI about what RSD/CRPS is. It's a rare syndrome that can happen through trauma from car accidents, work accidents, usually an injury to a limb. Your feet, you arms, hands,,,,I have type 2 which happened during foot surgery when three main nerves were severed in my foot. You have two nervous systems. Your main one is your brain and spinal cord. Your Sympathetic nervous system works everything else, all your internal organs, your heart, circulation, eye functions. Basically everything inside your body. When you have a trauma to the nerves it's the "flight or fight" gets turned on. Only problem is that it does not shut off. It's the highest injury/disease on the McGill pain scale. The pain appears to the injured person as being twice as painful as the normal person for the same injury. So I just had some dental work done. I also had a tooth pulled. I've had unbearable pain in my mouth, on the opposite side of where she pulled the tooth....My jaw all the way to my ear and inside my mouth is so painful I can not eat. If diagnosed early, which mine was not, they can treat it which could put it in to remission. I've had it five years since my surgery. When nerves die, your muscles follow. I can not stand for longer than a few minutes. I will eventually need a full leg brace so I can walk. My foot is paralyzed from the day I had the surgery. No, I did not get any compensation for the surgeons error. Most treatments are not covered by insurance.
Your doctor who said your itching is not from CRPS is a jackass......I have found over the past five years that if a doctor is involved in the causation of getting CRPS they will never admit to it. Most pain doctors don't know much about it, and all they want to do is feed you pills or talk you into having a tens unit implanted in your spine. After mine happened during surgery and then covered up by the doctors there is no way I would have anyone plant anything in my spine. My itching started on both hips at night. Then the itching is all over my head. Now it's everywhere. It's the nerve endings being irritated.....I have had rashes on my thighs, shocks in my eyes, I lose my voice, Stomach spasms, muscle spasms from my damaged foot to the upper part of my leg. When you have CRPS. Your pain sensors have been turned on from some sort of trauma and they don't know how to shut it off. There is no cure. Best thing to do is get online in a support group and read, read, read.....I was told by an attorney that early treatment, once it's diagnosed, has nothing to do with the outcome. Totally untrue,. I researched this for years. If you are ever told that early diagnosis has nothing to do with it's outcome get online. Go into the Social Security Administration for Workers Compensation. this is the government at it's finest. In the first paragraph concerning RSD?CRPS it tells you the sooner the treatment the bigger the chance of a good outcome...and can put it into remission......Lawyers dispute this, so do doctors.....If this happens on the job they can sue a lot easier then sueing a doctor.....They take care of each other....it's criminal.
Yes. Severe scalp itching at night. Neuro itching is a real thing. Put it in a search engine and information on it is available. There are various solutions offered on the Internet.
I too have CRPS (Complex Regional Pain Syndrome). back in 2009 i had an avulsion fracture and had surgery too. when i got the walking boot about 3 weeks later, i developed blisters on/in the incision. they itched and hurt at same time. i was diagnosed with contact dermatitis(i've had contact dermatitis before and it never looked like that). once blisters healed, my skin itched like mad and the only medicine i had was a home remedy. i used mentholatum on it, mainly at night, and it would not itch at all during the night. during the day, i tried to stay busy so i could ignore it. it slowly left and after 5 years i was itch free, and still am.
then 18 mths ago i broke my wrist. when cast came off about 8 weeks after accident, i had very weird symptoms (extreme swelling, red skin, numbness, skin eventually turned pale and shiny and thin, and a burning sensation strongest at night. my PT diagnosed me with CRPS with all the classic symptoms. it is due to nerve damage caused by the injury and being immobile for too long. it is also autoimmune. i too have lots of allergies and possible celiac (some tests were positive and 1 negative. too be safe i was put on gluten free diet). i also have a female disease that causes severe pelvic pain. i had hysterectomy for that and again develped symptoms similar to my ankle, only no blisters, but a red rash that itched. thankfully the itching did not last nearly as long, but the pain did. now i wonder if i had undiagnosed CRPS on those 2 occasions..
BTW: when i told my dr that the PT had diagnosed me with CRPS, he said "i don't think you have it" without examining me or anything. i still have symptoms of CRPS, but not as strong as before. Exercise is supposed to be the best thing for it as it keeps muscles from atrophing.
i use topical medicines for the pain and it helps, but you should not use it on broken skin.
Mentholatum has always helped me for immediate itching.
Prednisone is good for inflammation