Neuropathy

[Hammit39]

Just diagnosed with RA a month ago. My feet are killing me! Both have developed neuropathy in my toes. It wakes me up at night with pain. What do other people do to help this? Any tips are welcome. I am currently on Methotrexate and gabapentin. Thank you!

[helenlw7]

Since collapsing in May and spending 10 weeks in hospital, I now have no movement or feeling in my left foot, apart from sharp nerve pains, usually at night.The physio I see has tried to refer me to a neurologist at the same hospital, but no luck so par. I already take 30mg of amitriptyline at night and 2 co/codamol, but they don’t prevent the pain.

[AgedCrone in reply to helenlw7]

Do you have any diagnosis re the foot paralysis after such a long hospital stay?

I have recently seen a foot surgeon re pain in feet…& he agrees with rheumy,that damaged nerves in my cervical spine are the cause,& are best left alone.

[helenlw7 in reply to AgedCrone]

After my collapse I was on the floor for over 24 hours which squashed the nerve that goes down the leg, possibly the sciatic nerve. I’ve had tests with needles in various parts of my leg but nobody could say whether the feeling would come back. I’m still having lots of hospital appointments but because I still have a wound on hip I just keep getting passed from one department to another! I’m stopping at my daughters while I have work done on my house, but I’m fairly mobile on crutches and in a wheelchair.

[AgedCrone in reply to helenlw7]

Oh dear you have been unfortunate…when I was referred to the foot surgeon, it was with the intention of having a release of the nerves in my ankle… so when the wound on your hip has healed….if the foot problem hasn’t resolved…maybe something like that maybe possible?

It was decided because the base of my spine is in a bit of a mess…that any surgery or injections were a bit risky…& hopefully…the neck nerves will settle down .

I do hope things go well for you. Do let us know how you get on!

[helenlw7 in reply to AgedCrone]

I’ve just missed have a knee replacement because I was in hospital on the op date, and now they won’t even see me in outpatients until my hip wound is completely healed! While I was in hospital it was found that I also have spinal stenosis. Added to the RA in my neck it’s not the best shape for general anaesthetic! RA/OA the gift that keeps on giving!

[Beechwood1]

It's early days and I'm sure you're just digesting everything. This online community will be a great support for you. The lovely ladies on the NRAS helpline 0800 2987650 are available with advice, just for a chat or as a great sounding board, Monday - Friday 9.30am-4.30pm, please give them a call - they'd love to hear from you. Good luck

[KittyJ]

I’d go back to your doctor to let them know what they’ve prescribed isn’t helping. There are other things you can try. Don’t increase meds without discussing it first 😊🤞🏻 you get some relief soon and the mtx will hopefully help once it starts to work.

[medway-lady]

Are you sure it’s related to RA? I hope you’ve spoken to GP as there are other things like gout which affect the feet.

[AgedCrone in reply to medway-lady]

I recently had excruciating pain in the foot that is usually pain free….when I saw the foot surgeon he agreed with rheumy’s diagnosis……that it was the damaged nerves in my spine/neck that caused that pain.

[AgedCrone]

We are not qualified to give advice like this Ajay…

[Amnesiac3637]

I too have recently developed painful neuropathy in my feet - probably related to spinal problems but also pains in the balls of my feet as I’ve lost the padding. Medication aside( as that will be determined by your condition ) practically on a nightly basis I’ve rubbed the soles of my feet with Ibuprofen gel and Freezegel together which just takes the edge off and worn a light pair of socks to stop the sensitivity of feet on sheets in bed. Hope that helps.

[medway-lady in reply to Amnesiac3637]

Ask about Morton’s Nureoma and you can have one or more which is like walking on broken glass but is treatable. Steroid injections into the Nureoma can work or they can be removed. You can also have part feet injections to increase the padding but it’s not on NHS.

[Amnesiac3637 in reply to medway-lady]

Thanks. Am down for ultra-sound of my feet next month as the balls of my feet are suddenly so painful so I guess whatever shows up is likely to be treated. My rheumatologist is very thorough so pretty sure he won’t miss anything. Hope so anyway!

[medway-lady in reply to Amnesiac3637]

Not usually by a Rhuematologist if it’s a Nureoma it’s a job for an Orthopedic Surgeon or a good podiatrist. Even then they sometimes do shoe inserts but those never worked for me so I went the operation route. I hope you find some help a good tip is avoid shoes like sketchers as although they may seem comfortable they are not supportive. It’s @ good idea to have a small heel too.

[smilelines in reply to Amnesiac3637]

I liked reading that your rheumatologist is thorough.

[AgedCrone in reply to Amnesiac3637]

Ask your rheumy nurse about Bamboo Vinegar Patches…to use overnight.

I recently tried them for a week…& either the pain in my feet was going to go away at that time….on its own…or they did relieve the pain,,,& I slept so well….I overslept.

Every time I’ve seen a doctor…I have forgotten to ask if they are suitable to use regularly . They are a bit of a fiddle to put on if you aren’t too flexible. You definitely need Micropore to make them stay on overnight.

[J1707-]

I too suffer from peripheral neuropathy and recently just got over my worst ever peripheral neuropathy flare. Pain excruciating. It was caused by a new medication (Rituximab) I’m on max pregablin and just started Duloxitain which has helped. I find compression socks for peripheral neuropathy really helped especially at night. Seeing a podiatrist may help too. I know how painful this is hope my tips may help

[AgedCrone in reply to J1707-]

Who told you your neuropathy was caused by Rituximab? I had foot neuropathy for years before I started having Rtx infusions 8:years ago & it hasn’t become any worse with the .Rtx.

[J1707- in reply to AgedCrone]

No it was made worse . New rheumatologist said it was a documented fact . Entanercept was the medication that caused it in the first place .

[AgedCrone in reply to J1707-]

I never had Etanercept….I went straight from Mtx to Rtx…..maybe that is the reason my rheumy never mentioned the connection….but now a couple of different consultants….foot surgeon & gastroenterologist agree with him that my neuropathy is caused by damaged/trapped nerves…..I am mightily relieved, as Rtx was a game changer for me,& I don’t think I have the energy to change drugs right now.

What have you changed to….I hope it has helped?

[J1707- in reply to AgedCrone]

RTX has raised my ALP levels so I have to wait till they lower . Just had a nuclear bone scan so need to the results before I start Rinvoq (JAK) j hi opefully in Feb.

[bpeal1]

Please don’t increase medication without speaking to your GP or rheumatologist. Please note we are not allowed to give medical advice on this forum for the simple reason we are not medical professionals and even more importantly we don’t know you medical history.

I would contact them and tell them exactly what you’ve put in your post here and take their advice. Remember your doctors are not mind readers. If you don’t contact them to tell them otherwise they will assume everything is ok.

[bpeal1]

Ajay575 I know you didn’t intend your reply to be medical advice but the way it’s worded may make it sound like it is. As you know we are not allowed to give medical advice but we are allowed share experiences. To stop any confusion in the future you could try starting off by saying “Speak to your GP. However in a similar situation I found …. to be helpful”

[TheMarfs]

Hi Hammit. I was diagnosed in 2022 and my feet hurt for ages. Metho did not agree with my liver but have switched to Sulfasalzine and my feet are a lot better on that. I think you should speak to your doctor about trying different medication. I had a referral to the podiatrist initially and they made me an insole for my right foot. I have a lot of cool trainers now haha. Other than that, slightly stiff right hand this morning but I’m clasping a hot mug of tea and musing on whether to neck some ibuprofen. Hot shower incoming and then I definitely need some fresh air and daylight. Keep on keeping on! M xx

[AgedCrone]

I think you edited your post Ajay….the above is not what I commented on.

[RADOONE]

I have it bad in my right leg and hands I really find Aromatheraphy massage with rosemary and peppermint oil really helps and it’s natural x

[Flipper12345yellow]

Does anyone know what the connection is between ra and foot neuropathy ?

[OldTed60]

Hi. Not saying this applies to you but as you’re newly diagnosed then I’ll tell you just in case it later adds up. Burning soles was one of my first symptoms - like walking on hot coals. Later, diagnosed with RA, I developed parasthesia/ pins and needles and a cold water sensation with leg and arm weakness and an awful taste. It turns out this was small fibre neuropathy/ SFN and Raynaud’s, secondary to Sjogren’s and Systemic Sclerosis. If I ever had RA then there’s no evidence of it having been erosive. Also very large Morton’s neuromas which I now get steroid injections into.

It was the SFN, sicca syndrome and Raynaud’s that got the next rheumatologist thinking and testing me for both these connective tissue diseases but it’s took 12 years to get unequivocally diagnosed with systemic sclerosis as it evolves more slowly.

Apparently it’s rare/ unusual to get so many extras arrive so quickly same time as RA and this constellation made new sets of eyes rethink. Treatments are same or similar but outlook worse with systemic sclerosis/ scleroderma than for RA or Sjogren’s. Lesson I learnt from Sjogren’s and scleroderma specialists is that general rheumatologists often prefer to diagnose RA as it’s much more common and has many more treatments than the two rheumatic autoimmunes I actually have.

[evie93]

Hi Hammit 39, Happy New Year.

I have neuropathy form Chemo poisoning. I have had this for approximately8 years now. It is in my toes and fingers. It can be extremely painful and keeps you awake at night. I saw a neurologist and he gave me duroloxine. The side effects of these made me think I had Parkinson's . So I stop taking them and just put up with the pain. One little trick I find helps is heat. If my feet are hurting I have an electric blanket and put that on. Even in the summer. I soak them and wear slipper socks. These things seem to relive the pain but you will have to put up with the feeling of walking on pebbles. Shoe are so uncomfortable. I hope this is of use to you.

[MidnightBlue2001]

Hi, I'm very sorry to hear that you've developed neuropathy. I had it and it was just so painful. I struggled to walk on my feet. Felt like they were on fire and I couldn't sleep. I bought a nerve stimulating machine which helped me so much. I recommend getting one. I purchased mine from ebay but they might sell them on Amazon too. Wishing you a speedy recovery.

Osito

[MidnightBlue2001]

Here's another picture of what the machine looks like. Best wishes

Osito

[Hisue]

"IcyHot" roll on &/or cream & application of small frozen cooling pads.