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?

@CherryRipe1ah yes, exactly what I got told. I was in hospital for 3 days while they ruled out Gullaine Barre too. I feel for op, it takes ages waiting for all the tests and it was a worrying year for me. I hope she finds more answers than me!

@watermelon43 Ah interesting! I take pregabalin too, low dose but it makes me quite out of it sometimes! Was the cause of your neuropathy ever established? The private biopsy is expensive! Lucky it wasn't Guillane Barre, my friend has this and it's horrible however after being quite disabled, he improved dramatically after immunoglobulin infusions. In the USA I see many people, mostly women, who on the whole get more autoimmune conditions, having to fight their insurance companies to get immunoglobulin infusions that can help small fibre neuropathy, it's phenomenally expensive so NHS would deny treatment. I have heard of improvement on rituximab biologic but I guess it depends on what you have wrong & NHS funding- forget it! I'm going to give LDN a try but NHS won't prescribe it, think it costs around £50 pm.
@tinkersfig I hope you get some answers soon.

I thought it was the beginning of Gillian barre a few months ago, because I was sure it was going to be shingles, but no rash ever appeared and I didn’t get any paralysis etc. just this constant feeling of sun burn.

@CherryRipe1yes I only take it at night time as it makes me sleepy. I take 75mg, what about you? No, I had loads of tests but nothing has been found. I also randomly developed inappropriate sinus tachycardia - with no answers - so somethings going on with my body, just no idea what. They just put it down to ‘autonomic dysfunction’ - which is basically - I don’t know! Oh gosh, yes that’s so expensive. My FIL is on rituximab for an autoimmune condition and it helps him a lot. But it was a massive push through the NHS to finally get him on it!

@tinkersfig It's going to be a journey of being a medical detectorist. Come back here if you get fobbed off or stumped. @watermelon43 I take 50 mg sometimes but I know that's not how it should be taken however I don't want to build up tolerance. You're on quite a low dose. Weirdly I dont have pain at night. Neuropathy can be hereditary but also idiopathic which means they haven't got a Scooby Doo why. I think something must be causing it. Do you have any other AI conditions? Pots? Orthostatic hypotension? Autonomic dysfunction I think is also called dysautonomia and there are a few conditions under the umbrella that are linked ie fibro, sfn, pots, Ehler Danloss hyper mobility etc. I'm glad your fil managed to get on rituximab as it's quite a battle. I think it's easier to get in Scotland.

I have exactly this op. I knew as soon as I clicked on your post that this is what it would be about.
i was convinced in was shingles as it is all one side of my trunk but it never developed into a rash.
I have been so poorly for months and a couple months ago sure that me and my kids had Covid.
Me and my daughter are still suffering with various symptoms, gp keeps saying it’s viral so can’t help !
no idea what to do new, no money to go privately but this weird tingling / bruised feeling is the oddest, really conscious of it especially when I’m lying down and particularly when im breathing in and out and it brushes against my clothes, bedding etc

@Jellyheadbang it’s awful. I actually had the flu just before this started, at the end of May. Maybe it is a reaction to a virus?

it’s like the sore skin you get with Covid/Flu but has just never gone away! And it’s definitely just the skin, my muscles and joints etc are fine. I feel like I’ve been slapped all over my bum, back of thigh and shin.

Urgh it is grim. Be interested to hear if it goes away or you find anything to help you, I feel it most when I’m relaxing or lying down and it’s so uncomfortable it’s impossible to relax

Have you had your ferritin checked? Low ferritin can cause all sorts of odd symptoms, and the level needs to be higher than usually recommended for women.

You can get B12 injections privately Op. they’re not very expensive. £29 at Superdrug

You can get B12 injections privately Op. they’re not very expensive. £29 at Superdrug

My friend has been going through something that sounds very similar. They investigated first for MS as she had previously had some symptoms that could be linked. Turned out to be bulging discs in her back pressing on nerves.

@StellaAndCrow my ferritin was 30 which is a bit low but the dr said this wouldn’t be caused by that. I’m not not sure he has a clue what he’s talking about.

You need proof of a deficiency for Superdrug, but my levels were 300, which is in range. I’d be happy to pay it if they’d give it to me

I've had similar unexplained things, its so stressful which doesnt help with symptoms. I get pins and needles in my feet, mainly my right foot, and sometimes in my legs. MRI and nerve conduction were clear. I also have inappropriate sinus tachycardia and really frequent ectopic beats (trigeminy). I've got private health insurance so am lucky enough to have had loads of tests - not sure there's much I haven't been tested for! But still no answer.

The weird thing for me is that it completely went away over the summer and has now come back. I have wondered if its stress/anxiety but in many ways the summer was more stressful than normal life, with travelling, socialising, family stuff while back to school is more calm (2 lovely teens who are no trouble).

I also have unexplained back/hip pain and scans/the usual physio type tests suggest nothing is wrong.

I think not knowing what it is makes it much more anxiety-inducing!

@TheSixthBestOption A lot of people with muscular skeletal or autoimmune conditions report that they feel better in the summer compared to winter, also being more active (unless someone has chronic fatigue/ME) is beneficial for inflammation, lying down puts pressure on nerves and muscles. You had an MRI but did they definitely rule out any disc issues? Fibromyalgia which doesn't really show up on any tests could be the culprit but it's really just a guess. Tests for this are being researched at Liverpool University for fibro. Unfortunately around 30/40% of people with autoimmune conditions test as sero negative which doesn't help with diagnosing things until the disease is very apparent with other tests proving this. For example for around 2/3 years I had positive high markers for an autoimmune condition but now they have more or less disappeared so had I not been tested in that window the rheumatologist wouldn't know unless I flared up again.

I've been thoroughly checked by a rheumatologist and he doesnt think my symptoms are auto immune related or fibro (I dont have pain, just tingling and twitching). I've had autoimmune testing at various points over the past few years and only once had a slightly raised ANA that wasn't repeated.

I do think for me a lot of it is related to stress and anxiety, and probably also perimenopause. I also have a tingling/burning tongue and been seen by max/fax whatever they're called and they cant find any cause.

For me, trying to figure it out and researching all these horrible diseases I might have just makes the stress and anxiety and therefore symptoms worse. I've had these on and off for about 5 years and it goes up and down but doesnt seem to be getting worse so I'm just hoping it isn't an actual disease but just physical symptoms of stress/anxiety/hormones.

The doctors aren't interested as I've had all the tests and scans that show nothing is "wrong". Sometimes I can just accept it as part of my life and not worry about but at other times I become convinced I have some horrible illness that they just haven't discovered yet.

@TheSixthBestOption Yes, stress, anxiety and peri can cause those symptoms. I get the odd phase of burning mouth due to Sjogrens disease. I found cod liver oil and sea buckthorn capsules help it. Also recommended by my naturopath, sipping a slimy tea of camomile, marshmallow root and slippery elm. It lubricates and helps the burning. You might want to check your toothpaste, some ingredients can cause this. Some fellow sufferers recommend Oranurse, not sure if it's a USA product. Hope you all get to the bottom of your symptoms.

ooooh it’s bad today. All over my left bum cheek and back of the thigh. I keep checking for a shingles rash, but nothing there!

It’s allodynia.

i have it when im run down.

That’s the name of the sensation but I can’t work out why I have it or why it’s lasted for 4 months.

It’s really starting to get me down.

Did you have any type of virus before it started? I did, I believe it was Covid or similar and I’m still feeling the effects. I saw chiropractor tonight (regular appointment) and mentioned it to him, in case it might be trapped nerve or similar and he suggested it could be something related to a virus.
ive been on antibiotics and antivirals recently and the feeling has not gone away but it started when I was quite poorly.
Ive had other nerve issues before so thought it was similar again but now starting to wonder if it’s related to a virus due to when it started.
its bloody uncomfortable especially when I lay down

i did. I had the flu or something just before. I’m on antivirals as well because I am suspicious this is a herpes virus related. Shingles or HSV perhaps.

I thought the acyclovir wasn’t doing anything for me so stopped it on Saturday, but I can feel a burning in my vulva now! I’m going to go back on them tomorrow and see if it helps.

Oh that’s exactly like me except the vulva thing! I took most of the acyclivor but was so bloody ill I just stopped taking them, not on purpose just kept forgetting and before I knew it I’d missed a whole week and only had five days left to take. I am still really hoarse and short of breath, on and off for nearly a year but really peaked June/ July and end of August.
Hope you get some answers

Are you on a GLP-1? (Wegovy, oxempic, etc.) Allodynia can be a uncommon side effect. I've had it twice in the 1.5 years I've been on the shot.