Nerve pain

I saw rheum last week who couldn't have been more disinterested in my nerve pain. I'm disappointed as she's normally a good listener. She was more interested in my bloods and puffy knees. My CRP is raised, so she bumped up my MTX and sent me on my way. In a way, I can cope with the RA as I'm used to it but the nerve pain is making me distressed.

My lovely GP did refer me to a pain clinic but it's nearly 4 months on and no sign of an appointment. My feet burn all night long or I get pins and needles. When I wake up, they're numb. During the day, I keep getting a tingly sensation along the inside of my calves and on the bottom of my foot, an irritating sensation that there is something in my sock or shoe. Aaaaaah! Can I scream and cry and wail and be self-pitying? I promise I'll pull myself together in the next 10 minutes as my lunch break finishes!

(Edit: what's with the random tags? I didn't add them.)

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10 Replies

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  • Hello,

    I can 100% sympathise, I've had tingling and burning pains on the top of my feet since Feb and although I saw Rheumatology Podiatry and my consultant they could offer anything apart from an increase in Amitriptyline and hopefully it will go away on it's own. Disrupted sleep but blood tests good after an infusion of Rituximab. The day after I saw the consultant who was positive about the inflammatory levels I got severe pain and numbness in my foot, ankle, knee and hip this was 5th May. Horrendous for about 12 hours then it settled to weird feeling/ tingling, pain numbness in my foot and very restricted movement in my ankle - Long Story short I got an "Emergency" Appointment on 3rd June, I've got a foot drop, nerves and muscles not getting the signals through - had a Back MRI and that's clear, which is good. Had conductive nerve tests today and there is a significant nerve problem (tell me something I don't know!) Both consultants think it's RA related, inflammation in the nerve area which will have to see if a different combination of meds can reduce. I am on Gabapentin, for nerve pain (3 x 300mg daily) now since 3rd June and that has finally kicked in - I've been able to sleep for the last week for the first time in 4 months. My advise is keep ringing Rheumatology and updating them about your symptoms - see if Gabapentin is an option for you. Walking and driving are a challenge, which is a nightmare, but better than the two times RA has caused inflammation in my left eye.

    Hopefully Physio will help and provide an aid to help me avoid tripping, will do exercises all day long if it helps improve my walking.

    Thinking of you, keep hassling (nicely) until they listen.

    Michele

  • Sorry to hear you're in a similar but more rubbish position. Poor thing. RA is the pits. :(

    I think I'm going to see what my GP says. I was offered gabapentin a few months but came away without a prescription in the end. Of course, seeing my GP is no mean feat. Getting an appt is like searching for a needle in a haystack! It never used to be like this.

  • Hi, Gabapentin has definitely helped me and I don't think I've had any side effects - I take so many tablets it's hard to tell! I have to say my GP Surgery is very good and because of my RA they seem to give me some priority. The system now is you ring on the day and you either get an appointment or a phone call from a doctor that day. They don't forward book unless it's the nurse or a blood test. Some of my friends can never get an appointment - booked up for 3 weeks, so it is a bit of a lottery.

    Thinking of you and wishing some pain reduction and better sleep soon

    Michele

  • I suspect that the problem with your rheumatologist is that she didn't know what to do about your nerve pain, so took the easy way out and ignored it while concentrating on what she could manage.

    Your GP and the pain clinic are more likely to be able to hear what you say about other things!

  • Good point, I like your line of thinking. I tend towards being irrational when overtired. I'm hoping to get a GP appt this week.

  • Have you had any investigations done to see if there's anything impinging your nerves? I'm thinking MRI or x-ray. The fact that It's localised it certainly sounds like that could be the reason. It might be worth going back to your GP (see a different if necessary) and asking if they will send a radiology referral through for you. Physiotherapy can often help to realign things and reduce nerve impingement if that is the cause of your problems. I have a really annoying burning itch on the top of my right foot and numbness along the lateral edge of the foot caused nerve impingment due to a significant scoliosis. I'm waiting for a physio appointment in the hope it can help as the other alternative is major surgery to try and straighten out the spine. I hope you get some relief soon by whatever method.

  • Hi mistymeana

    I have scoliosis (and DDD + stenosis) and also face the prospect of major surgery.

    I have been desperately trying to avoid this (as has the surgeon who did two previous emergency decompressions on my spine) as it is supposed to be full of risk and rather painful at best.

    I have been seeing a Personal Trainer (so - same route as your physio will probably take) and can honestly say it is the best thing I've ever done. I am finding that as my core muscles improve the pain is definitely decreasing. I am more mobile, much, much more steady on my feet and able to reduce the painkillers.

    I'm told it is the best defence against scoliosis as the muscles help support the spine and decrease the pressure that causes a lot of the pain. That and lots of stretching / loosening exercises on a daily basis.

    Tough going for sure, painful as heck - particularly at the start, but worth it undoubtedly in the medium to long term.

    All the best and good luck with the physio.

    Ade

  • Yes, I've had nerve tests (nerve conduction studies and EMG) for wrists/arms which were normal. MRI of spine was normal. The tingling in hands was thought to be because of the way I walk with my crutches.

    I have autonomic dysfunction, so I suppose this is all related. I do have private health cover but I'm not sure if I want any more tests.

    Thanks for your reply and help.

  • Hi crashdoll

    Sorry to hear about your nerve pain, it is horrible and unrelenting sometimes.

    Pregabalin and amitryptaline are sometimes prescribed for neuropathic pain, as is gabapentin as mentioned above. Some folk find Pregabalin to have fewer side-effects (like weight gain) than gabapentin. My experience of Pregabalin is - don't forget to take a dose. If I do I feel indescribably bad the next day.

    Have you done the vitamin B12 thing?

    difficulty-swallowing.com

    b12awareness.org/

    Probably have, but if not have a read and see if you recognise any of the other symptoms. Supplementing is fairly straightforward, doesn't require a prescription (although ideally the correct blood test would be good - not a serum test), but - and here's the thing - you can't over do B12 as it's water soluble and any excess is excreted. 😐

    Good luck.

    Ade

  • Thanks, Ade. I did have low B12 but my levels have come back to normal now. I have issues with digestion (partial gut paralysis) so I might have dipped down again. I will see what my GP says if I can get through on the phone and get an appt!!

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