u/Enough-Ad9887

Hey! Anyone with similar pain? It’s this wiiiild burning throbbing ache that roams my body, also buzzing and stinging. It’s like acid eating my tissues. It will happen for example in my hips, 2 hours later it’s gone there and it moves to my knees, then a few hours later it’s in my upper back or elbows and so on. Basically the pain attacks, torments me and then it just disappears like it never happened only to hit another place. The intensity varies from mild to horrific. It’s exceptionally bad now since I have a huge flare after a viral stomach bug. Does anyone have a similar migratory pattern?

Hey! Anyone with similar pain? It’s this wiiiild burning throbbing ache that roams my body, also buzzing and stinging. It’s like acid eating my tissues or like a wild bear ripping me apart. It will happen for example in my hips, 2 hours later it’s gone there and it moves to my knees, then a few hours later it’s in my upper back or elbows and so on. Basically the pain attacks, torments me and then it just disappears like it never happened only to hit another place. The intensity varies from mild to horrific. It’s exceptionally bad now since I have a huge flare after a viral stomach bug. Does anyone have a similar migratory pattern?

Hey. I have small fiber neuropathy that started after a reaction to a medication and it’s all over my body and a while ago I started having symptoms in my pudendal nerve area. So technically this is pudendal nerve neuropathy and dysfunction. I have pressure and squeezing in there, dystonic cramping in my lower abdomen, I often feel like I have some electric pole or a curling iron just stuck from my lower abdomen to the inside my vagina. I feel a lot of paresthesia there - hot, sharp electric shock, but most often something electric that isn’t a shock but feels like the entire area is hot and charged with electricity, some tingling and buzzing. It feels like there wants to be a huge painful discharge but instead I get like an afterimage of it, it just feels soooo wrong. Sometimes it’s like an itch inside along the nerve but not on the skin. It’s not even burning skin, it’s not painful to touch, it’s like internal nerves are crazy. Does anyone feel anything like this? It can be in my vagina or even anal area. Sometimes it feels like my vagina will fall out. I was checked by a gyn and went to physiotherapist and it didn’t help. I have days when it’s gone and days when for many days in a row it’s flaring badly.

Anyone who has decided to be OAD due to medical reasons? I feel sad. I am one and done as a result of my chronic illness. I never saw myself as a mother of an only child, I wanted 2 or 3. But considering how sick I got, it is a miracle I have even one child. I love my 3yo daughter and feel sad my girl will never be an older sister.

My daughter has also blessed me with being a perfect kid, honestly best kid I could imagine, no major tantrums, great with food. So this is kind of deceiving I guess, I know that I probably couldn’t have two perfect kids lol 🫠

But I feel sad. Every time someone I know announces their subsequent pregnancies I feel awful and start grieving again.
And the comments I sometimes hear from clueless people. „When are you having a brother for your girl?” „Come on, give her a sibling so she won’t be alone”. I even heard it from my own mother who knows how sick I am. I usually can look after my daughter properly and give her what she needs but there were times and probably will be when I was so sick that other people had to take over more than I wanted to.

Technically I could get pregnant, my chronic illness has nothing to do with my reproductive health but I can’t go through pregnancy again, the last one was terrible and I though I wouldn’t survive it. Afterwards all the hormonal changes also made me worse. I acquired my illness from medical malpractice and it was absolutely preventable and I feel mad that it all happened to me and robbed me of so many things, including having a bigger family. I am happy I have the one child, she is my everything, but damn.

Hi! Does anyone have dystonia and dysautonomia? I started having this weird thing that my abdominals/diaphragm/intercostals (skeletal muscles) cramp up and it can trigger dysautonomic attacks - my gut and stomach feel off, i get a lot of sounds from my stomach, I might feel nauseous, it’s like something moving both in the muscle and inside my digestive organs, I get pain sometimes too. But this comes and goes like a light switch. And when this suddenly spikes I also can get these odd attacks where I get hot/cold flashes, this weird nausea, off feeling, impeding doom.
I rarely have HR spikes, my BP is totally fine. I have something really odd.

Anyone with anything similar?

If you have full body SFN, can you share what do you deal with on a daily basis? I know general descriptions, I am asking for your personal accounts.

Is your tingling or burning a skin sensation, rather shallow? Does anyone here get deeper symptoms that feel like they affect you down to the bone?

I sometimes have the outer skin symptoms and honestly for me it’s a relief that my insides have let up as normally my symptoms feel like they are coming from somewhere deeper. The tingling is deep like my limbs are swelling with electricity. The hot electric deep itch is like my muscles or bones or a layer under my skin are itchy in an electrical way, I also get what feels like a stinging/smarting sensation like alcohol has been pointed on an open wound but sort of deep inside of me on large areas. Electrical shocks feel like it run along my bones and explode deep under my skin with this overwhelming feeling I cannot even name. I also get dystonic muscle cramps as the misfiring nerves irritate motor nerves.