Your story seems to be very similar to mine. I got the FLU (strand B) in January of this year. 2 weeks later I got sick with some 24 hour gastro bug that had me throwing up all day. Everyone in the household got it including my wife and son. almost exactly 2 weeks after that is when my symptoms started. The first week or two it was just my feet. They would burn and tingle off and on. From there it went to my legs to eventually my entire body. I get pins and needles sensations, burning, itching, poking, etc all over my body along with many of my symptoms you described. The first few months it waxed and waned day to day, week to week. Some days it would be a 1/10 and I could hardly tell it was there and others it would be a 6/10 and bud the crap out of me.

Then after about 4 months is basically went away for 2 months. During that time I almost forgot about it all and almost every day was a 0.5-1/10. Then, out of nowhere, it returned back to where it was originally (maybe a little less intense) and for the last month it's been the same off and on waxing and waning. My nuro also suggests it's some type of post viral issue that will hopefully clear up on its own.

I've had a brain MRI, normal bloodwork like CBC, Liver, CRP, etc plus other ones to look for autoimmune disorders and everything has come back normal. The whole thing just messes with my anxiety because of the unknown.

Hi mate,

Yeah sounds identical!

Days/weeks of normality, then spikes of annoyance! It is demoralising to be honest. I think I've already mentioned, the amount of times I thought this was on its way out only to come back is now at least 10-15 times. And each time it does regress and then come back, I repeat the cycle of anxiety, googling, etc. and it's just a vicious circle.

The last few days have been annoying. Tingling and TICKLING of all things in my mouth/face/legs/arms. Twitching seems to have stopped.

I started Gabapentin a few days ago but only taken 300MG so far so hoping they might help, but nothing as yet. The supplements haven't done anything yet either, but that's only been about 3 weeks.

The original neuro I saw thought it was post viral too and said he expected it to clear up in a matter of weeks, but nearly 8 months down the line here we are :eek:

I have exactly the same symptoms as you, like literally everything. Have it for 2 years now, for me it started after knee surgery. I also have the exact same diagnosis with the functional problems rather than structural. The only difference my doctor says is that it won't get much better but won't get worse. It's more irritating than painful, but you get used to it.

Good day from other end of Hell.

Symptoms you are describing is 90% me + i have bunch of other horrible stuff.

I developed severe pain, tingling, twitching,numbness sensation of warmth in the 4th month after infection, most likely COVID. The COVID long haulers groups are full of weird neuro symptoms.

Anyhow I seem to be worse than others . I am in the 7th month of this Hell. So far done lots of regular blood work - low on neutrophils ,
head MRI - waiting on results
Nerve conduction study - all good
Some sonography- all good
Reumo specialist- all good
Will push for lumbar punction

In meantime I have severe fatigue, heart palpations, post excertion Shortness of Breath, Yea, "all good''

The saddest part is I can do nothing to get my energy up- i can not excersise.
And I CAN NOT DRINK COFFEE. This is the absolute worst the few times I drink strong enough coffee, i feel alive, I have hope and energy to do stuff. Only to get hit with unbelivable neuro pain in my legs and arms. In fact the pain in legs started after strong coffee. Also the SOB is very sensitive to cofee intake.

I manage the pain by popping Gabapentin 300mg like candy.

To be honest , If I dont see any improvements insoming months, I dont see how I can live like this. I actually can not do any job. I am worthless human being.

P.S. Got here by searching neuropathy+coffee

Good morning prehisto,

Sorry to hear of your terrible experience. You have it bad. You really have suffered over the last seven months and I hope you find some answers and a resolution of your health problems.

Non tolerance to coffee? or Caffeine? That's awful. Can you drink green tea? Can you ingest caffeine through tablets?

You mention blood work. How are your vitamin levels? B12? B1? Vitamin D?

This is an excellent resource below....

Chronic Fatigue Syndrome and Fibromyalgia

You are not a worthless human being, you are, temporarily, ill. Who you are and what you are experiencing are separate entities. Stay strong.

Hello! Thanks for the support.

I can drink tea, it seems that there is somekind of threshold of caffeine which makes me feel good- alert but in the same time makes these symptoms incredibly worse.

D vitamin was very low but i got it back up. Did not test for b12 but tried to supplement it in large doses. Noticed that it helps a little with fatigue but nothing else.

Yes, have been reading up on CFS but nothing that usefull. Currently i just want to get diagnosed with neuropathy to get some treatment.

Hey Prehisto,

How are you?

Have you thought about starting your own thread with a little more background to generate more support from this site?

My thoughts are you have some kind of autoimmune disorder somewhere on the spectrum and that a specific diagnosis is not always possible and that the self help measures you can initiate will be the same anyway. There's plenty of information here. Go for it.

Take care,

Atty

My 8 month anniversary of this today :(

Hi LeedsLad84,

I am sorry this is not a good anniversary. I have been following your post with keen interest, as my situation is very similar to yours. I keep hoping you and others will post the great news of healing, to give me hope. I still can't believe how quickly these full body symptoms of mine came on. Only thing we can do is try to hang in there.

You guys in the UK are lucky you have all of these resources. I'm a student and not working and I can't get insurance. Insurance in the states is insanely expensive. I had to pay $450 for my EMG that showed nothing and I still have symptoms from the EMG itself. I don't have an actual PCP just a friend of mine but i can't get any testing done because i would have to pay for it myself out of my life savings! This is the system we have in America :eek: