Peripheral neuropathy - anyone else?

[orangeleavesinautumn]

It's the pits!

Currently got 3 fingers, 4 toes and one ankle bandaged up, and everything is 100x harder than usual. Can't walk without a walking stick today, but my hands can't manage to hold on to it, so I'm a bit stuck - which is ok, as I cant manage to manipulate a house key, purse, bank card or bus pass anyway, so where would I go?

At least I can still type, even if not with my normal typing fingers

My dad's friend has it due to diabetes. My dad also has it. There's a hospital I. Sheffield that can test if it's due to gluten. It can also be genetic, or due to nerve compression.

I have this. Doctors can't find a cause. I walk like a drunk in the dark. Have just broken some ribs falling over. It's really irritating, but fortunately I don't have much pain.

Yes, I have this along with Sjorgrens Syndrome, POTS and heart problems.

it is my foot and lower leg that are most affected. At times very seriously and at other times less so.

I find exercise, even temperature (not too cold and definitely not too hot) and Magnesium all help. So too does an anti-inflamatory diet (no gluten, dairy, sugar, nightshades, meat or nitrates)

I have been told it will never improve but will gradually degenerate So my approach is to pack as much into life as possible while I still can.

Mine's from chemo, and is just getting worse and worse at the moment

I have it from chemo too. It’s in my heels at the moment, they are numb and I have little balance. My oncologist says it’s just another side effect, it may go away it may not. It’s a price I have to pay I guess.

I watched a video on bowel cancer uk site by a physio about neuropathy, and the gist was you need to encourage your body to form new pathways, so lots of gentle exercise and movements. I am trying, but having had extensive surgery I am a bit limited at the moment!

Best wishes to you xx

Mine is also from chemo, toes and instep of both feet though the right is worse and I often wake with a weird kind of tingling during the night. Chemo finished in 2019, unfortunately for me it’s a lasting side effect. Worst thing is I have a tendency to trip as I can’t feel my toes, I fractured a knee last year when I missed a step. BUT alive with neuropathy (and lymphoedema and constant exhaustion from the leterozole) is better than the alternative!

I have a neurological illness CIDP which is chronic inflammatory Demyelinating polyneuropathy.

No feeling at all in my feet and hands, altered sensation in my arms, below my knees and in my face.

It's awful, I also have neurological fatigue (a bit like cfs), problems walking and with my balance.

I've had it for 11 years following an ear infection which triggered my immune system to attack my nerve lining (hence the Demyelinating).

Peripheral neuropathy is really hard to deal with and I'm really pleased (in the nicest possible way) to "meet" other people suffering from it.

@PeanutButterOnToad I so agree! Better many many side effects than dead!

@weegiemum yes it is good to meet fellow sufferers! People just don’t understand how tricky it is to be without feeling.

I have it, since Guillain Barre. (poly neuropathy - I was totally paralysed. (For 5 weeks)

I live in Spain and the heat makes it SO much worse. Ayone else find that? Winter seems better.

I can walk, but used to love it. Now am fearful of it. Learning to walk was so, so hard.

Can you all write? I struggle.

ps. Thankyou for the thread!

@adriftabroad so sorry to hear you had Guillan barre, what I have is the chronic form of that! It sounds like a really scary illness to have. If you're on Facebook there's a good support group for inflammatory neuropathies run by GAIN (charity for Guillan-barre and Associated Inflammatory Neuropathies). I find it very helpful.

Strangely I find the heat helps my pain (and isn't it ridiculous that we get pain in our numb parts!). I can do most things for myself now but I can't fasten my bra behind me (I lose my hands if I can't see them) or tie my shoelaces! I can write and feed myself though I couldn't when I was first diagnosed.

What treatment does anyone get? I'm on amytriptaline and pregablin for neurological pain and I get IVIg (intravenous immunoglobulin) once a month. It helps with the fatigue and also sensation, keeps me mobile and helps too with fine motor skills, like knitting!

Hi, I have it from chemotherapy too. Hand and my feet up to my knees. I can’t walk without a stick and the pain/numbness/tingling/parasthesias are utter, utter misery.

I’ve had two spinal cord stimulators implanted but neither worked. Gabapentin and Duloxetine didn’t work either. I’m now taking pregabalin and amytriptiline, Tumeric, alpha lipoic acid and Zopiclone. There has been a reasonable improvement in my hands but my legs are fucked. I think the Cisplatin just destroyed my nerves. It’s like walking if you can imagine having your legs wrapped excruciatingly tightly your legs or walking with heavy, stumbling feet.

My body is so broken. I feel like a wrecked carved up selection of scars, some of them quite shocking lucking. I have neuropsychological hell. On a daily basis I trip, lose balance. I am never NOT in pain.

thank you for this thread.

@weegiemum you are extremely kind, thank you for that!

My husband has CIDP too

I have peripheral neuropathy as a consequence of vasculitis ( an autoimmune disease which attacks blood vessels)

I have constant nerve pain in my feet/ legs...it's like fire ants biting you or someone constantly pinging elastic bands against my skin
Can't stand bedclothes on my right foot but also my feet hands don't like getting cold because of the blood vessel damage due to the vasculitis
I take gabapentin at night to help but had this for 6 years now and just have to do things when I'm able
used to love hillwalking , now I can hardly walk 1km on the level , without having to stop and rest and find it really hard to find shoes that are comfortable ( fitflop are the best)

I have Dorsal Root Ganglionopathy. I am mainly numb from under the bust downwards and have patches of numbness on my arms. The consultant thinks it is due to Sjogren's Syndrome, though the blood test neither proved nor disproved that! and I didn't want a lip bioscopy and another numb patch on my body to know for sure. That said I constantly have to sip water, so I can see why he is pretty sure!

I drop things and fall down and trip a lot include down flights of stairs. For my safety I use stair lifts, double crutches and wall surf in the house and use a power chair outside the house and downstairs. I am in pain and uncomfortable every day, I have been told that I can not expect to be pain free again :(

I have a lot of neuropathy feelings in my legs, the worst ones are the lightening strikes of pure agony and the slowly roasting in a fire ones, I dislike the frozen solid and over sensitive to touch periods (when I can't feel them?!) and I am less bothered by the numb or water dripping down my leg feelings.

My husband has recently been diagnosed with MS and has some of the twitchy and numb feelings too But thank goodness he doesn't have the pain.

Nice to meet you all! Hope some of you are still watching this thread 😁

@Worrysaboutalot I am still watching! Nowhere near as bad as you though. I still have numb feet thanks to chemo, but it was well worth it. I had a complete response to my treatment so am officially cancer free, though with wobbles and numbness, and other nasty aches and pains.
Neuropathy is not something I had heard of until recently.
Best wishes to all the fellow sufferers!

I have sensori motor neuropathy partly due to a bad reaction from Nitrofuarantin & partly from B12 deficiency. My balance is shocking, I walk with crutches or use w wheelchair. I started with pain in my bunions & then the numbness started. I'm numb from my knees to my toes.

Hi, I hope you don’t mind me replying but I have been searching for people with autoimmune neuropathy.
I’m going through a terrible time and it is so hard to find anyone experiencing the same.

I got peripheral neuropathy about 10 years ago and was diagnosed with sarcoidosis and immune inflammatory disease. The sarcoid calmed down and the pins and needles calmed too, still there but hardly anything.

everytime I get a virus or have to take antibiotics my neuropathy, numbness etc flares up. Doctors have never known why and haven’t seemed bothered.

recently I have been dealing with a chronic sinus infection, lots of antibiotics etc.
the numbness and awful burning, is the worst it has ever been and is now on my chin and back of head as well as arms, hands, legs, feet, I feel so weak.
because of history on my notes of anxiety and autoimmune disease my GP just said try amitripilyne without referring me for any tests.

I am quite scared now as something really isn’t right. It’s been 3 weeks at the higher level of numbness and pain and it’s not calming down.
even my jaw hurts now.
it isn’t the sarcoid returned as my blood test was normal.
I just wondered if you had any info on how you get diagnosed with inflammatory nerve diseases like CIDP as I’d like some tests to rule some things in or out. Not knowing is scary as I don’t know how bad things could get.
thank you in advance for any info you might have :)

Ask your doctor to refer you to a good neurology department. They will run tests and diagnosis if they can.

Yes you need referral to a big teaching hospital neurology department. I was "lucky" as my local hospital is the QEUH in Glasgow with the biggest neurology dept in the west of Scotland.

I was given Lumbar Puncture, nerve conduction tests, mri, ct, ultrasound, specialist blood tests (some had to be packed in hot sand and couriered to Germany!!) and some cancer tests as one of the possible diagnoses was paraneoplastic syndrome, which is neuropathy caused by cancer, mainly ovarian and breast.

We reckoned this saved us 6 months anyway in investigations (also helped that my dh is a doctor so he could do doctor-speak). The biggest one that takes time is the EMG nerve conduction tests. They can take up to a year from a community referral!

I wouldn't be too worried about an exact diagnosis. I was onto my ivig treatment before I had my diagnosis, at that point it was "sensory ganglionopathy" - basically a deficit between my spine and my peripheral nerves. I was eventually given a diagnosis of CIDP. Annually in the uk this diagnosis is given 60-70 times a year. It's very rare. In fact, apart from the people I've met in my hospital treatment days and on my online support group, the only person I've heard of with it is the pp husband who has it.

Hope though that you can find a treatment soon. I'd advise you ask about steroid treatment or intravenous immunoglobulin treatment (Ivig).

Hi @weegiemum thanks so much for the information and getting back to me . I did question about it being an autoimmune/immune mediated neuropathy and I worry that the underlying cause is not being treated and shouldn’t I have steroids etc, I was told most neuropathies have no real treatment only pain management. Which I know can be the case for some but not all if the underlying disease is found. I work in research myself so I have a good understanding of the different types of neuropathies and how they should be treated. I’m just not getting anywhere. I found a Dr that specialises in neuropathies, but he has a waiting list, first appointment is mid December, so I guess I just have to hope it doesn’t continue to get worse.
my face is definitely getting worse, ears and jaw are numb and my legs are so weak now. But oddly my jaw also hurts and I cannot open it fully.
I also have bladder and bowel symptoms which is worrying me, GP referred me to urology but again I’ll probably see them next year and I don’t think the problem is with my bladder it’s the nerves.
I keep tripping over and don’t trust myself to drive at the moment as my legs just as not hold position. It’s really scaring me but as Doctors don’t seem bothered I keep thinking it can’t be anything serious and yet it feels very wrong. 😖

It's a very scary time, when you know that there is something deeply wrong but have no way of hurrying on the process.

December isn't bad for the neurologist actually, I know you want it quicker but hopefully he'll be worth waiting for.

In the meantime, what helps? Is there anything you can do about alleviating the symptoms that you can do more often? Do you have pain? If yes, go to the GP. They can prescribe neurological pain killers like amitryptaline or gabapentin which work much better than ordinary painkillers like paracetamol or ibuprofen.

Keep posting, too. Here's hoping they'll get to the bottom of it soon!

@weegiemum thank you so much. I really do appreciate your kindness. As you said it’s such an isolating scary experience. I think because I haven’t lost total use of mg legs or hands etc the GP just looks at me and thinks, oh well she has a history of neuropathy so there’s nothing going on. But this is very different.
the neurologist in December is a private appointment to University college London, to their neuropathy centre where they run specialist test to find out what kind of neuropathy people have. They take private referrals as long as GP writes a letter, I’ve provisionally booked December and now have to convince my GP I need the referral.

Yes I do have awful pain, the skin on fire is the worst, and sometimes it feels like freezing cold even though it’s also numb. So bizarre and scary. Also sometimes it feels to me like the skin on my legs are wet but my legs are dry 🤷‍♀️ I also have the numbness and burning on my ears, tip of nose and chin, across my chest and sort of down my spine down my back. Rheumatologist suggested pregablin? But I have yet to receive a prescription for it. My GP said Amitripilyne (spelling!) I took it for 2 nights and I had terrible night sweats and nightmare and woke up with my hands even more numb, nerve pain was less though as a plus but the side effects are 🤯 my mouth was so dry I couldn’t swallow. As part of my symptoms are dry sore eyes and dry mouth and my nose is so painful and dry and awful ringing in my ears. This neuropathy all started after sinus and eye infection.

but again just wanted to say I really appreciate the advice, other people I know with neuropathy have it from diabetes or just in their feet and don’t have weakness so its hard trying to explain what is happening to me and how quickly it’s getting worse.
All while I try and act completely normal in from of the children.

Has anyone suggested Sjögren's syndrome to you? The numbness in the face and dry eyes and mouth all suggest that (as you can tell, I've read a lot about this and asked endless questions!).

It's a shame amytriptaline didn't work for you, I take quite a high dose and get on great. I'm also on pregablin but that was at the advice of my consultant, I'm not sure if a GP can start it or not.

Feel free to DM me if you want to chat, I'm very happy to help.