RA and nerve damage: Lately I've been getting terrible... - NRAS

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RA and nerve damage

mjrminor profile image
27 Replies

Lately I've been getting terrible electric-shock like pains in my right foot that leave it feeling stiff with the toes on the right side feeling numb. It's excruciating - bad enough to make me cry out. It happened last night and then again in the early hours, waking me up in agony. Today my foot is sore and hurts to walk on. I'm wondering if this could be some sort of nerve damage.

I already have existing issues with my feet and ankles because of the RA, and have orthotics from the podiatrist. And I've had similar pains like this in the past but not for a while.

It's impossible to get hold of rheumatology to ask for advice - they've even got rid of the helpline and now say you have to go via your GP. Which I've done - he wrote to them over two weeks ago, but I still haven't heard anything.

Has anyone experienced similar pain to this? Thanks.

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mjrminor profile image
mjrminor
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27 Replies
medway-lady profile image
medway-lady

I haven't sorry but have had Morton's Nuroma's it might be worth a look up. x

mjrminor profile image
mjrminor in reply tomedway-lady

Thanks I'll take a look.

Lovetodanceto profile image
Lovetodanceto

Hey there had a really painful episode on the ball of my left foot today sothen I limped for a while. Feel for ya really do and my Amitriptyline has started wearing off and I've never had my feet scanned although I'm convinced my inflammatory arthritis started in my feet. Take care and really hope you get treatment and my feet feel like they are burning and tingly.

Rachmaninov2 profile image
Rachmaninov2 in reply toLovetodanceto

Like you, my inflammatory arthritis started in my feet. Mine feel burning and tingly too, as if pins are being stuck in them. As the day wears on, my feet and ankles start to swell and I can hardly walk. I have to sit with my feet up for as long as possible. It makes life extremely difficult. Sorry you have this too Lovetodanceto. 🙂

Lovetodanceto profile image
Lovetodanceto in reply toRachmaninov2

Hey there Rachmaninov2 ty yeah feel for ya as well feel guilty if I don't have a little walk however had to drag myself really not feeling well however have a f2f tomorrow. Well really really hope they are helping you with treatmentX

Rachmaninov2 profile image
Rachmaninov2 in reply toLovetodanceto

Thank you, no treatment at the moment. I’m glad you have a face to face tomorrow, I hope it goes well for you. 🙂

Lovetodanceto profile image
Lovetodanceto in reply toRachmaninov2

Ty Rachmaninov2 x

mjrminor profile image
mjrminor in reply toLovetodanceto

Hiya. Sorry to hear you're having feet problem too. I've never had a scan on my feet either, my rheumatologist referred me straight to podiatry when I first started having problems a couple of years ago without even taking a look at them. In my experience rheumatologists don't seem all that interested in feet even though it's really common for people with inflammatory arthritis to have problems with them. It's crazy.

Here's hoping we both find a solution!

Lovetodanceto profile image
Lovetodanceto in reply tomjrminor

Yeah really really hope they find a solution the podiatrist said I didn't need any insoles or any help however I would have thought it would be hard for them to detect inflammatory arthritis as they would have to see results of a scan, well hopefully they will find a solution for ya and everyone else who suffers from this with their feet take care.

Yes in fact I’m just back from a neurology appt . I have experienced all of the above . I saw a private podiatrist who said I some nerve damage. Saw the registrar and mentioned-it . He did a quick can you feel ( no) . I had nerve tests today . I kept being asked how long have you been having problems or can feel this and then repeating test then said I need to speak to a doctor. Will get full results in 2 weeks . I asked if there is a problem and she said results will go to your rheumatologist who will see what type of intervention is required..🤔 I have mentioned these problems to my Gp. Consultant and nhs podiatrist for 3 years.No one was bothered wish I pushed harder sooner .

mjrminor profile image
mjrminor in reply to

I'm sorry to hear you've been suffering so much - but it sounds like you're hopefully (and finally) going to get some answers - and the right treatment. We can but live and hope! I know what you mean about no one being bothered. I've had these pains before and was told to take Magnesium because it was cramps. It's definitely not cramps! It feels like someone is stabbing a knife into the side of my foot. I've had it several times again today, and it hurts to bear weight on my foot now.

I guess I'll call the GP again tomorrow, and see if there's any sign of the rheumatologist ever making contact. Wishing you well.

in reply tomjrminor

I got lucky I saw a podiatrist who specialises in RA . I think I would still be fobbed off .

Lovetodanceto profile image
Lovetodanceto in reply to

Hey there J1707 really know how ya feel when I saw the podiatrist he really didn't want to touch my feet as I had been using a magnesium spray as this calms the tingling. My feet were flaky from the spray and I explained this to him. The way he looked at me when he said this was like really gone off hmmm take care x

ATSF profile image
ATSF

I have the same problem in my left hand. Seen own GP once since February 2020. They hide behind an iron fort manned by admin staff. My RA Consultant and the local RA Hospital are seeing nobody, but you wont be told this unless you know someone who works there. To even get a phone call you finish up with a Nurse that will let the consultants secretary know your latest flare up problems. Main Hospital referrals are now in some departments are now over 12 months overdue. The NHS seem to have closed down.

mjrminor profile image
mjrminor in reply toATSF

Hi ATSF I'm sorry to hear you're in a similar situation. It just seems to me that the NHS is at breaking point, which means a lot of us are being left out in the cold. What we're supposed to do in the meantime I don't know.

ATSF profile image
ATSF

Wow! I don’t believe it. Phoned Doctors this morning, the appointments person must have detected the state I was in and got a Doctor to phone me back, followed by I want to see you immediately. Managed to see one of the Doctors who have put me on an emergency supply of high dose Prednisone, let’s hope it will work. He is also writing to the Hospital to tell them I need very urgent help as he could tell the chronic amount of pain I was in, plus other side effects that he thinks is a reaction to the pain problems.

mjrminor profile image
mjrminor in reply toATSF

That's great! Hopefully you'll get the treatment you need now - and won't have to wait too long to get it. Good luck!

Shonkie profile image
Shonkie

This sounds like Polyneuropathy which I have from RA, ,basically nerve damage with stabbing pains and numbness. Not affected by usual pain killers often bad when trying to sleep. A neurologist can do tests.

mjrminor profile image
mjrminor in reply toShonkie

Sorry to hear you're suffering with that Shonkie. I've booked an appointment with my GP now so hopefully he'll do a referral.

Shonkie profile image
Shonkie in reply tomjrminor

Just to add that when I was tested for Polyn the neurologist said I didn’t have it (confusing) my rheumatologist said that I do have polyneuropathy but as it is only in the small nerves the test doesn’t show it. It still hurts! Beware of this false result.

mjrminor profile image
mjrminor in reply toShonkie

Thanks for the warning, Shonkie. Have they given you treatment for the Polyneuropathy?

Shonkie profile image
Shonkie in reply tomjrminor

So far as I can see there isn't any apart from heavy duty painkillers. Not willing to go that route myself. Good luck!

mjrminor profile image
mjrminor in reply toShonkie

Thank you. I hope you get some relief too.

Stillfightinit profile image
Stillfightinit

You describe my symptoms perfectly along with spasms and as I explained to orthotics and podiatrist my left leg in particular does things that I could never do voluntarily.Always much worse at night and yes it hurts like hell.

mjrminor profile image
mjrminor in reply toStillfightinit

Sorry to hear you're suffering too. Has the podiatrist suggested anything to help?

in reply tomjrminor

My podiatrist has said laxer treatment may help . Will see what rheumatologist says . I have good podiatrist and I trust him.

Stillfightinit profile image
Stillfightinit

Thanks for the reply, have been referred to hospital and waiting to hear.

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