Torture at night: Burning when something presses the skin

I have Allodynia and CRPS. It’s a constant pain and feels like someone is pouring acid on my upper left back and neck as well as my underarm area after a surgery that I had last year. 3 days post op I knew something was wrong because I had fever chills and my skin was burning and I kept going back but he blamed me for being to skinny… I found a new doctor and kept going to different doctors until I couldn’t take it anymore but as I was giving up and feeling like no one cared when they are supposed to as doctors, I went to the Neuroscience Institute and was finally diagnosed with Allodynia and CRPS and then went on a search for a specialist and after seeing another 3 specialist, I found the specialist who has been great and said you need this procedure (stellate ganglion block )and next week I’m finally scheduled for it. My doctor also said it should help but there is no cure only treatment for the pain so after these surgeries I might have to try ketamine treatments but they are really expensive (1500 per session and they usually do 3-6 infusion so over 10k) so I’m praying that at least the surgery will help me before we spend that kind of money. I believe the cost is cheaper now after the pandemic so if I have to try after all this I will no matter the cost because this pain is horrible and I still have other surgeries but hopefully this helps you. And remember you are your advocate so if you feel like a doctor isn’t helping than call their supervisor and definitely get a new doctor. It was my 3rd or 4th doctor who finally cared, was familiar with ways to help and offered them to me. Doctors are replaceable and some think that they aren’t and are doing us a favor being there patient but it’s a symbiotic relationship and mutual respect should be given. There are a lot of doctors that became doctors to help and I have found that they are the best to go to because not every doctor is familiar with something but if they care they will send you to someone else who does and hopefully you will end up finding what is wrong and specialists to help you.

Thanks. Feels exactly like a bad sunburn all my whole body. Makes it impossible to sleep more than a couple of hours.

No problem! Hope that it helps. I sleep sitting up halfway off the bed so maybe you should look into it. It’s very rare but hurts like hell.

Have you tried lyrica or gabapentin? I have your condition and I use both of these. They calm down the burning a great deal. Next I have a spinal cord stimulator that really works well. I suggest these instead of your choices because these are way cheaper. Both are covered by insurance. One last thing I suggest. Beware of switching doctors all the time. You will be labeled as a drug seeker because of switching all the time. I'm not saying that. I just know how doctors in these times are. Then it will become increasingly hard to get any doctors to see you in the future. As a very long term pain patient I know this has happened to many patients I have Met.

Hello @pitepalten and welcome to Mayo Clinic Connect. I am sorry to read about your pain and difficulty especially at night when you are trying to sleep. You will notice that I have also added your post to the Neuropathy group where you can also find another conversation on Allodynia, which @no1likemo mentioned he has. In fact, I've linked you directly to another member @gwen4 who shared a very similar experience to that of yours.

- Allodynia:
https://connect.mayoclinic.org/discussion/alloydinia/?pg=1#comment-594333

Can you share a bit more about what your doctor said after receiving the results of your nerve test? Did he/she have any next step recommendations or make mention of Allodynia being a possibility?

I’m going back next Thursday. He just said take b12 during the last meeting. My family physician prescribed Symbalta. It has helped me sleep a little better. Hopefully that continues. Just a few days since I started. One other symptom is my legs feel tired. Overall, I don’t feel that tired considering I don’t sleep well. I have always been healthy and in good shape. I have never taken any medicine in my 60 years on this planet. I’m never feel sad or depressed so I’m taking it in stride. I need to stay around for my kids! Thanks for the comments, Lars.

When I get that (feet/legs burning when covers touch them, can't sleep) I know I'm not taking enough gabapentin/lyrica, so I tell my doctor and we raise it. When I start to feel tired and weak during the day, I know that the neuropathy has receded a bit for the time being and I'm taking more gaba/lyrica than I need so I cut them back just a tad. I have axonal sensory neuropathy, over time it gradually gets worse. The gaba/lyrica calms down my nervous system so it slacks off of sending me false pain messages. Peggy

Also, in Physical Therapy, they taught me to do 10 knee bends every day (properly, slowly, with tummy pulled in, chest out, head up, rear sticking out, quadracepts flexed, kegels tight, breathing in while going down, out going up) to keep legs strong. Many of our senior citizens need help getting into and out of chairs, cars, etc. because their muscles have gotten weak. This exercise keeps me strong enough to get up and down, in and out, pick up things off of the floor, bend down to pet a dog, etc. without getting sciatica. Peggy

My arms and legs feel so weak. The tested my nerves and muscles and didn’t find anything. I wonder what is wrong with me.

I had to to leave a post for you on this. This is the exact thing that happened to me when I contracted Lymes Disease. I had a ridiculously painful growing skin rash that hurt with a light breeze. I couldn't sleep or even lay down! I didn't think it was Lymes because I had not seen any bites. Come to find out, a rash can occur anywhere. Not necessarily at a bite. I had been so careful for years as a Landscaper. I forget the name of the Antibiotics I had been perscribed but, they helped with the rash and the unbearable pain. I can't tell you this is a result of Lymes but, it's something to consider. Hope this helps