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Old 08-04-2021, 07:32 PM #1
tomhe204 tomhe204 is offline
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Default acute SFN

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.

Last edited by tomhe204; 08-05-2021 at 12:05 PM.
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Old 08-05-2021, 03:58 AM #2
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Quote:
Originally Posted by tomhe204 View Post
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 once 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 a 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.
My man I have the same thing. But my ANA is negative. Drs think sjogren or crest or both. Just take tramadol. Its the only drug thag will help. Trust me.
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Old 08-05-2021, 11:35 AM #3
tomhe204 tomhe204 is offline
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Hello focusedd

Thanks for your message. Can you tell me more about your journey and how you live with this sort of SFN? Can you still do sport and travel?

How much Tramadol you take per day? I take 200mg and feel no improvement but it helps little with anxiety.
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Old 08-05-2021, 09:40 PM #4
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Hi again tomhe, I posted to you once before on another thread. I see you have been given a diagnosis now.

There are other users here who experienced sudden onset full body neuropathy. You might need to search some older posts.

Just above the list of threads, click where it says "Search this Forum" and check the button for posts rather than threads.

If you use specific keywords or a particular person's username you can find a lot of information from others who experienced similar. I used "full body". It's terrible to be in so much pain and I hope you can get some respite from it soon.
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Old 08-06-2021, 12:55 AM #5
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Hey tomhe,

I've read your heartbreaking story. It's truly awful what you're going through. The feelings of shame that you have that you cannot even tell your family resonate with me. I hear you and I understand that, but I think its time to let them in and let them help you. Or at least consider it. I think you need the help of people that love you. Masculine pride and shame are strange bedfellows at difficult times but you are an intelligent, gut wrenchingly honest, brave and self aware young man. I think you get the concept of the loss of identity that illness has stolen from you. Let people help you.

Nobody can tell you how long your acute phase will last because it varies with the individual. But typically in SFN there is an acute stage followed by a recovery. Again that recovery will vary in duration and extent but from personal experience I can tell you it is a wonderful blissful hopeful time. It will happen. The body is a great healer. A plan of action would be to create the conditions to allow the body to heal its self the most efficiently and maximally.
Look at diet, supplements, rest/ meditation/ breathing, light exercise etc, but most of all don't do this alone. I know from a previous post you split with your partner recently. Let people in. Let them help you.

Please keep us posted on your progress,

Best wishes,

Atty
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Old 08-06-2021, 03:09 PM #6
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tomhe,
How are you? Are you getting any sleep?
Don't forget there are the "STICKY" threads at the top of the page with very helpful information.

e.g. STICKY - Important Links to Useful websites

I know that sometimes we don't feel well enough to read a lot but you will find a lot of posts from people who have posted here in the past who have been in very similar situations are you. Read posts from glenntaj if you can.

If you ever feel you can't cope anymore please reach out for help, and by the way, there is an SOS forum here. https://www.neurotalk.org/survivors-of-suicide/. It's very quiet forum but always available for people who are having trouble coping. There's usually someone around who can talk.

take care and please let us know how you're going.
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Old 08-06-2021, 10:50 PM #7
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Default Should I ask for opiates for nerve pain?

You can ask about opiates for nerve pain, but in my experience, most traditional docs will say no. They say that they don't work well for this type of pain. The main reason is that the FDA has cracked down on opiates being dispensed since
the opiates have a high incidence for abuse and addiction. For example, if you break a bone, you may get them, since in 4-6 months you will be healed. Short term pain. Neuropathy is usually what is considered long term pain. The chance for abuse and addiction is much greater the longer a patient uses the opiates, so therefore, they hesitate to dispense.

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Old 08-09-2021, 06:28 PM #8
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Thanks so much to everybody who wrote and cares. Sleep is a real struggle without benzos. I will write more one of these days once I get the energy for it.
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Old 11-05-2021, 04:55 AM #9
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Thanks so much to everybody who wrote and cares. Sleep is a real struggle without benzos. I will write more one of these days once I get the energy for it.
Hello tomhe204. As a fellow newly diagnosed SFN, I can identify with some of your story. Are you seeing any relief of symptoms? I am finding this is no picnic and has lots of ups and downs.
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