I had a horrible day again and need some support. I already thank everybody for reading this long post.

I posted once before but was unsure what I had back then. but now I was officially diagnosed with SFN non-length dependent. (via skin biopsy). All blood work came back normal. Except one antibody little higher (SS-A /Ro, the one for Sjögren, I believe. I was checked already intensively during a 10 day stay at the hospital ( beginning of July) They sent me back home in the end and basically said it is all in my head more or less- as only the skin biopsy was still outstanding. But now I noticed on one document ,they knew all along that is may be SFN, as the simulated skin wrinkling test in the hospital was abnormal already in July. But they did not bother to tell me until the skin biopsy was out as we know now

My neurologist said it is idiopathic. He set me on 300 lyrica and he said I should increase to 600 gradually until it helps. I also was given duloxine 90mg per day. Did not notice any improvement. I feel seriously drugged all the time.

My real question here. How to survive this acute phase? I cannot even say how fast this disease is spreading. if somebody interested you can read my first post here in July 9th. At this point I only had nerve pain in the legs/knees and arms. It has since spread to all my body even the face. I have shooting/stabbing pain all across my body now. Chest pain as well, as if some elephant is sitting on my chest. 24/7 burning pain in my legs is the worst of all. Also crazy allodynia in my legs. All sort of normal activities cause pain there. I Also noticed that my right leg seems detached from my body for the last couple days. I have no longer the same perception of my right leg. my right foot does not seem to send the same impulses to my brain when it touches the ground- somebody has experienced this before? I also have non-stop muscle twitches across my legs and arms.

I really do not know how to survive this phase. when will this acute phase stop? Can it get worse indefinitely? I have a hard time walking by now. I am so scared to death to be in a wheelchair soon. I am determined to end it, should I really need to resort to this.

This is seriously the most dreadful time of my life. The worst it gets worse every day and there is nothing I can do to stop the progress, so frightening. I feel so helpless. I feel there is monster inside my body which is gradually taken over all body. The monster runs amok and no medication can stop it
I do not wish this disease on my worst enemy. It is literally torture with no end and no relief.

Believe it or not I was still running 10km end of May and going to the gym 2-3 per week by then. I was in a good shape. The speed of this disease scares the life out of me. As i have suicidal thoughts basically daily for a month now, I am also in treatment with a psychiatrist. He basically wanted to send me to psychosomatic clinic for a couple of weeks. But it seems he and the people at the hospital were all wrong. It is not in my head. I have acute SNF. I pray everyday the progress will stop for now. I am scared to go to sleep as usually new symptoms show up overnight.

I am 36 and was full of life until some months ago. Now i feel my body will never be the same again and all my dreams are gone. I feel i will never travel, run etc, ever again. Let alone find a partner again and build a family. Seems all impossible by now. I feel worthless and disabled. I feel even too ashamed to face my family. Most horrible disease seriously.

The most frustrating with the SNF is, whenever you try to be active and go for walks etc, the pain gets worse. I am a person who always wants to find a solution to a problem and be proactive. But here nothing works ever- it just gets worse no matter what I do.

Please how to survive this acute SNF phase? when will it stop? I had the first major symptoms in May. Will the pain go down once the acute phase is over?

I would like to go to the ER every single day. As the pain it so excruciating and progressively worse every day but then again I know they could not help me with anything. I cannot believe that in the 21st century there is nothing available to kill this nerve pain. I cannot live the rest of my life like this. It is like I am being tortured everyday and the prospect of the next day is nothing else than more torture. Everyday,I have a point where I want to give up and but then I pull through again somehow. But I simply cannot witness my body deteriorating like that (it is breaking me- my body was my pride.). I took so good care of my body all my life. I could cry for self pity and nostalgia never hit so hard like these days. Now I finally see what matters in life and I do not get a second chance.

I also take tramadol 200mg per day but it is little to no help. Unfortunately also Benzo if I have a really hard day and do not want to keep going anymore. should I ask for opiates for nerve pain?

I also take all the supplements recommended here besides regular medication. also started gluten free 2 days ago.

Which medication will kill my pain please? seems there is none. I what world do we live in? I cannot believe that doctors have no solution and simply send you off and say sorry . I would expect they send me at least to a pain clinic stationary. But the neurologist said SFN is not a reason to go there.

Thanks for your time and any input.