Hey everyone

Thought I'd check in. Generally, things are improving albeit slowly. Previously I used to have a lot of odd things like feelings of wetness, hot/cold spots, etc. which seem to have subsided and it is now just generally tingling.

I am yet to have a day where I don't notice anything at all, but there are days where it is very minimal. I am not sure whether the Gabapentin is making a difference or if this is just occurring naturally - I suspect the latter as I have reduced the dosage and everything seems to have stayed largely consistent.

As I've read and been told on here, the journey is definitely 'patchy' and I am not even sure if I am recovering, but hoping I am. There doesn't seem to be any set pattern but what I do notice is the less comfortable days consist solely of prickling/nipping/pinching (mainly hands/feet) which last a second but are very transient and disappear. From the tracker I have been keeping, it does seem to be that there are largely comfortable days, followed by a flare up and a small block of more uncomfortable ones, and then back to normal with the cycle repeating. Thankfully, it does seem to be more favoured toward the better days for the moment and the flare ups seem to be less frequent than back in the early days where it was quite constant.

As I say, I have been keeping a diary of symptoms and marking them on a daily basis which I have found useful in monitoring overall progress. If anyone's interested, I've included it here:

13/10 - Legs/Gym. Prickling/pinching/twitching all over including face but not really bad. 3/10
14/10 - No gym. Barely any symptoms at all. 0.5/10
15/10 - Push/Gym. Very very light symptoms. 1/10
16/10 - Pull/Gym. Light prickling and tingling. 3/10
17/10 - No gym. Very mild symptoms. 2/10
18/10 - No gym. Mild tingling and twitching in hand, foot, knee, etc. 2/10
19/10 - No gym. Moderate prickling, mainly in the face area, but also pre-cramp type feeling in the right foot. 5/10
20/10 - No gym. Mainly tingling underneath skin. 3/10
21/10 - No gym. Tingling and prickling/pinching (transient and happened in leg and arm) felt a lot in the face. Also feels tight when it happens in the face. Happened the majority of the day. 6/10
22/10 - No gym. Mild tingling but overall better. 2/10
23/10 - No gym. Mild symptoms. 2/10
24/10 - Upper Body/Gym. Mild symptoms. 2/10
25/10 - No gym. Mild symptoms. 1/10
26/10 - No gym. Very mild tingling and twitching. 2/10
27/10 - Full body at Gym. Mild tingling and twitching. Also felt a bit of dysesthesia on the left side of my face. 2/10
28/10 - Bit of tingling and minor prickling. 3/10
29/10 - Some tingling and twitching. 3/10
30/10 - Minor tingling. 2/10
31/10 - Tingling and a bit of dysesthesia. 3/10

**Gabapentin reduced from 300MG to 200MG / day

01/11 - Minor tingling. 2/10
02/11 - Minor tingling. 2/10
03/11 - Mild tingling. 2.5/10
04/11 - Bit more bothersome tingling and prickling. Transient. 4/10
05/11 - Mild tingling. 2.5/10
06/11 - Minor tingling. 2/10
07/11 - Minor tingling. 2/10
08/11 - No gym. Mild tingling. Also felt a bit of dysesthesia on the left side of my face. 2/10
09/11 - No gym. Mild tingling and tickling under the skin. 3/10
10/11 - Long walk. Tingling and some minor prickling which was transient throughout. 3/10
11/11 - Tingling but also more prickling throughout which was happening intermittently in hands, feet, rib cage, etc. 4.5/10
12/11 - Tingling but also more prickling throughout which was happening intermittently in hands, feet, rib cage, etc. Mild twitching too. 4/10

Supplementation at present is:

Morning: Magnesium Citrate, Benfotiamine 300mg, R-Lipoic Acid 100mg, Acetyl L-Carnitine 500mg and B12 1000mcg Methylcobalamin

Evening: x1 Omega 3 Fish Oil 1000mg and x1 Multivitamin

* again, not sure if these are making any difference yet. I have been on them for about 2 months which may not have been enough time.

So I am currently experiencing that 'block' so things have been a little uncomfortable the last few days. I am also going to wean off Gabapentin totally from tomorrow.

Let me know if anyone has any thoughts or questions

OP: Reading thru some of your thread, I see 100mg of Grape Seed Ex...going higher could help more...200mg daily, depending on your bodyweight too....

A friend is off gabapentin since taking grape seed extract now for 10 yrs or so...she's dealt with neuropathy for decades.... Statins and radiation from cancer therapies were the culprit...

I've told my story and I also believe Inosine to be so helpful in reducing the burn/tingle stuff.

Control/reduce sugars and carbs....

Hey there

I actually tried grape seed extract 100mg for a few months but found it had made no difference so discontinued. Perhaps that was a bit hasty.

Maybe I’ll try 200mg. Is it best taken with food?

Hi there,

I read your story with great interest, I have also been debating whether to post my story on here.
I could do with some support but I’m worried about what I may hear and nervous about posting.

I haven’t actually come across anyone with symptoms so similar to mine until I read your story.
I was beginning to feel like I must be the only one.
My symptoms are strange and varying, parasthesias all over my body, many like you have described, of varying duration and intensity that come in flares. No allodynia or burning either. Much more severe in the first couple of months.
Mine are always much more pronounced on my left side, with not as much on the right.

I too go through phases where I feel I am improving and have days with hardly any symptoms only to go back again. It’s soul destroying to say the least.

My reason for my problem is completely different to yours though and I’m still trying to get to the bottom of it. I believe it is due to the medication I was taking. I have also had issues with my feet (problems began with pins and needles in toes) which have slowly been improving (no motor issues or numbness) but has impacted my activity.
The first neurologist said it is fibromyalgia, I don’t have any other symptoms of Fibromyalgia though, I have no myalgia or fatigue.
He advised a NCS to rule out long fibre neuropathy although he strongly believed I don’t have it. .

He said that if I had a reaction from the antibiotics then it must have triggered something functional because he doesn’t believe my symptoms are long or small fibre damage. He said they wouldn’t be so transient if it was damage.
I’m getting a second opinion from a specialist in London next week... perhaps the same one as you.

I was wondering how you found the nerve conduction study... did you find it made your symptoms flare up or not?

I’m really scared to have the test because I’ve read that other people found they were worse after (yes I too frequently go down that road of desperate googling causing more pain than gain generally) i should stop but every time I find myself in a bad flare of awful parasthesias again I feel compelled to resume my search for answers only to end up feeling more anxious.

The Dr that carries out the test was honest and told me he couldn’t say whether it may or may not.

I’m 5 months in now and I’m really tired of it and quite scared , it’s like the merry go round from hell.

How are you at the moment ?

Hey Maria

I’ll respond properly to this tomorrow. Feel free to PM me too, always happy to have a chat. Which neurologist are you seeing?

Take care of yourself

Hey MariaMaria,

Good morning.

After consulting my paperwork I had "Nerve Conduction Studies 24 June 2020." at Norfolk and Norwich University Hospital. It was, I remember, a beautiful day. The doctor was extraordinarily grumpy. The tests themselves seemed hilariously antiquated. He used some coloured wires that reminded me of childhood Scalextric and an old Tailor's tape measure that he used to measure the distance between my ankle and knee etc. I actually enjoyed the tests. There was no discomfort at all. Zero. I had to really stop myself laughing at times at the bedside manner of this doctor.

"I was wondering how you found the nerve conduction study... did you find it made your symptoms flare up or not?

I’m really scared to have the test because I’ve read that other people found they were worse after"


After the tests I drove to the golf course and thrashed everyone. I recorded my best round of the year.

There is nothing to worry about regarding the tests. You have to prepare yourself for the staff being covered in PPE and hygiene measures etc. But that is all.

The tests themselves are harmless. They cannot make your symptoms worse. There is no physical means by which they can.

Let us know how you get on.

Atty

Everything you said here, I have exactly the same. Not a single thing different. It is like I am listening to myself talking. I have it for 2 years now and the cycle is the same, and there are more comfortable days than before. I am now at a point where if someone told me "Sign here and it won't get better but it also won't get any worse" I'd sign without thinking.

Hi,

I looked to see if I could send you a private message to discuss but there was no facility to do so, when I enquired I was told I couldn’t do so until I had posted more.
Not sure if you’re able to message me at all ? then I could reply to you.
I’m seeing Dr Radunovic.

Look forward to hearing from you.

Hi,

Thanks for your reply.
That does sound really old fashioned! I’m glad that the grumpy doctor didn’t put you off and you managed to enjoy the test.

It’s good to hear that you were completely fine afterwards and that does make me feel better so thank you.

i have had eight electromyography / nerve conduction studies over the years. while i wont say that i would do it for fun, it really was not bad at all ever and i never had any lingering or new effects from having the testing done.