What is this sensation all over my skin?

[tinkersfig]

For the last 3 months I have had what feels like achy pins and needles anywhere from my feet to
my arms. Today it feels like it’s all over my bum cheeks and in my bum hole!

I’ve been to the drs twice, multiple blood tests and on my last visit she just blankly looked at me and said “I don’t know what it is”.

It’s such a strange feeling, not to touch, but it feels like my nerves are on overdrive under my skin? Kind of like the skin pain when you have the flu.

any ideas?

Did your dr test your B12?
https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/

@Choux yes, it was on the low end of the scale but because it’s over the “recommended limit” they won’t give me the injections. I did request a trial but she completely shut me down.

Have you read the NICE guideline? Were you already taking B12 supplements when tested as that can inflate the result. Do you have other symptoms on the B12 deficiency symptom list?

If your level is low you can take high strength oral supplements and see if that helps. I am currently taking high strength oral B12 supplements. Holland and Barrett 1,000 ųg a day which is 40,000% of the nutrient reference value.
https://www.nice.org.uk/guidance/ng239/chapter/Recommendations#diagnosing-vitamin-b12-deficiency

I hadn’t taken any prior to the blood tests but I have been taking them this week. No improvement as of yet

Did your dr advise how much to take? Do you think you are low in B12 because of diet or absorption issues? I suggested to my GP that I might not be absorbing it properly but she said it was probably diet related. After three months on 1,000ųg a day my B12 level in my blood was over 900ng so I guess I am absorbing it.

If you keep taking high doses and the symptoms don’t ease in 2-3 months you should probably go back to the GP.

I’ve been to the DR today and has a test for intrinsic factor antibodies so that should tell me if I have an absorbing problem

Well I’m still none the wiser. All my bloods are fine but yesterday was a bad day. My whole left side, including my ribs and my right thigh felt as if I’d been slapped.

I’ve been referred for nerve conduction tests but the dr said that won’t tell me what’s causing it, just that it’ll confirm if the nerves are miss firing.

Im getting very worried that this is some sort of early MS symptom.

Are you stressed? I imagine you’re worried about the symptom, but I mean prior to this? Stress does weird things to the body.

@Lighttodark not particularly stressed and wasn’t stressed when it started.

This is how I was diagnosed with Fibromyalgia. They do the nerve function tests first and if they are okay then the next stage should be an MRI. That is where it splits off for MS type diagnoses or nerve pathways being oversensitive, depending on whether they see lesions/myelin sheathed. If they suspect Fibro then make sure you get referred to a Rheumatologist.

Good luck OP. And keep up with the extra B12 as stress can deplete it quickly and getting weird health symptoms is certainly stressful!!

Thanks @Pixiedust1234 neither diagnosis’s would be good. I feel quite stressed now lol

If it's not b12 deficiency it could be fibromyalgia, anxiety, small fibre neuropathy (won't show up on nerve conduction studies), too much b6 can cause nerve problems. MS often presents with eye issues but not always- Dx by MRI as pp said. Some people with long COVID are having neurological issues. Have you recently had any antibiotics for utis for example?

Oh yes I have this. Had every test under the sun - told it could be small fiber neuropathy but they won’t test me for it to be certain. Joy!

Ps. My MRI and Nerve conduction tests were both normal. Despite having the symptoms you describe quite severely. Even the doctor said probably MS - but it wasn’t.

It’s not anxiety. How is small fibre neuropathy diagnosed? I had antibiotics over a year ago for cystitis but nothing since.

So you’ve just been left with out a diagnosis or treatment?

The NHS don't offer it, you have to really push for small fibre nerve testing. If the nerve conduction studies don't find anything insist on sfn tests. They will give you a qsart test which tests how well you are sweating and the gold standard is a punch biopsy on the heel and hip. Some antibiotics can cause nerve issues, Ciprofloxacin or antibiotics in the fluroquinolone family. Sometimes metronidazole. Possibly nitrofurantoin. You'll need to check these for side effects and black box warnings. . I'm not saying definitely it's just a possibility to consider if you aren't getting answers. You say your blood are fine, did they test you for any autoimmune conditions?

@CherryRipe1 you really know what you’re talking about!

No, no checks for auto immune, just all vitamins and organ functions. The dr said it’ll be a few months before I even get the initial appointment for the nerve tests, so I’m in limbo right now.

Thanks so much for helping me try and get to the bottom of this.

Just checked and the medication for the cystitis was Nitrofurantoin but I had it in April 2024……not sure if it would be so delayed?

Autoimmune conditions can give you neuro symptoms, Sjogrens, lupus, fibro, maybe rheumatoid arthritis, possibly thyroid issues, coeliac If you don't get answers ask for a full autoimmune panel especially ANA, rheumatoid factor, crp, esr. Hba1 for diabetes. These can give clues if it's autoimmune related. There are other tests but your GP should know. It does sound like a bit too far back with the nitrofurantoin to have caused damage but it can start subtly as a mild tingle or vibration, just keep it in mind. I have Sjogrens and fibromyalgia and get tingles, pins and needles etc. I'll come if I think of anything else.

Come back to you I meant. No edit on my post for some reason!

I have this! I’ve never figured out what it is. It’s so difficult to describe that I’ve never been to the doctor about it. Following with interest.

Yeah the NHS are very loathe to pay for this. Neurologist said to me "anyway if you have it there's nothing you can do" Nice! I said "well immunoglobulins and rituximab might help but doubt that the NHS will fund it". You can self fund a punch biopsy but it's expensive.
@tinkersfig I have heard of some perimenopausal women getting these symptoms. Also have they checked you for Guillane Barre?

@tinkersfigno the neurologist has prescribed pregabalin which has been wonderful in controlling the symptoms. The only way to prescribe it is by a skin punch biopsy but the nhs won’t do it, he said basically the treatment is the same whether confirmed or not so no point. The waiting list is very long and only 2 hospitals do it. You can self fund however, but it’s about 2.5k last time I looked. Anyway the medication is working so I’m happy with that.

Only way to diagnose it **