sore feet possible peripheral neuropathy.

[dg70]

just seen the rheumatologist who very kindly fitted me in this week. Now getting tested for peripheral neuropathy. She thinks it most likely. Various drugs have been mentioned. Going forward anyone had any issues with medications for this? I'm only on hydroxy and pilocarpine at the moment. Luckily it's mostly in the feet and it's not causing much pain just sore and sensitive. It's a little bit in the fingers. I have read catching it early can help. Be grateful for anyone's experience of this condition and therapies that work and keeping it under control.

[Hidden]

Note my diagnosis is Stills Disease which manifests as RA for me.I have developed PN in one leg following muscle injury.

RA in both feet and knees make it interesting but I’m managing with light exercises, massage and pain relief.

[dg70 in reply to Hidden]

I find I'm much more unsteady on my feet now. If I don't watch where my feet are I can stumble or fall easily.

[Krazykat26]

Hi dg 🤗My rheumy has told me that I have peripheral neuropathy..he hasn't referred me on though so I'm not sure what the testing for it entails. I'm prescribed a low dose of Amytriptiline which I take at night..twelve hours before I'm due to wake up as it can cause drowsiness or feeling spaced in the morning. Originally I started on 10mgs n it's recently been increased to 20mg. It helps with the burning that I get in both my feet n lower limbs.

The rheumy said I can go up to 50mgs if I want to but it will make my Sjogrens symptoms worse so I'm keeping it as low as I can.

Hope u find something that helps u 💜🌈😽😽xx

[dg70]

Thanks for the info. I am just having blood tests this week to rule out vitamin deficiencies etc.. Then its the NCS and EMS nerve conduction tests if the bloods are fine. The pain is not too bad at the moment its the numbness and soreness mostly. I think medication is next on the list too. I read if caught early you have more chance of of it getting worse or at least slow it right down. I have Sjogrens too in what way does Amitriptyline make those symptoms worse? Sounds like the usual drug thing it gives with one hand and takes away with the other😆

[Krazykat26 in reply to dg70]

Amytriptiline can cause dryness especially mouth. I take a bottle of water to bed at night n keep sipping it when I'm up for loo visits. 💜🌈😽😽Xx

[dg70]

Loo visits, I'm familiar with them. I put a xyimelt slow release lozenge in my mouth when I go to sleep and it usually keeps my mouth moist most of the night. Pilocarpine tablets are great for eye and mouth moisture too but you get a hot flush 20 mins after taking it. Yippee!! I need to research which drug for peripheral neuropathy might suit best. Thanks.

[citygirl1234]

Hi, the test she is sending you for is probably a CNS / EMG test to see if your nerves have been damaged. Note: this test can come back “normal” and you can still have PN and nerve damage, because there isn’t a reliable test sensitive enough to pick up changes in the small fibres (CNS/EMG picks up changes in medium / large fibres). I have small fibre (“glove and stocking”) peripheral neuropathy and as my EMG is normal, my rheumatologist just prescribed me amitriptyline for the pain and will just keep an eye on it. (“Glove and stocking” means it just affects my hands and feet). There are some other meds you can try, but amitriptyline is usually first line.

The main thing is to work out what is causing the PN and to keep an eye on it - there’s also some blood work to rule out other possible causes. For AI related PN e.g. PN caused by SLE or ANCA vasculitis, the focus is usually on getting the AI condition into remission to stop the PN getting worse. Sounds like your rheumatologist is on it though which is good!

Hope this helps!

[dg70]

Yep my Rheumatologist is great, I'm very lucky to have her. She did say the test is unreliable so we'll see. You are the second to be on amitriptyline so it looks like this might be a good medication once I get to this stage. Yes I agree I need to know why I have developed this issue and whether it is just external or internal as well. Thanks for replying.

[puffyface]

I have just seen this post. I also have SS and get really painful burning feet and hands. My rheumatologist told me to try Amitriptyline too. It does help…but she also said it just covers the problem. Better to get the SS under control so that the PN doesn’t get worse.

[dg70 in reply to puffyface]

Thanks for replying. I'm taking a folate supplement as this was the only thing that was deficient on my bloods recently. We'll see how that goes but no change yet. I'm seeing the GP next week so I'll discuss the next move for the legs and feet then. There's a list of five drugs I can have so it's working out the best one for me. Amitriptyline is a go to one I think for trying first or gabapentin?

[puffyface]

As far as I understand it, Gabapentin has more side effects. I tried duloxetine??? first I think….but spent the days as a zombie. I think the answer is to treat the underlying condition and the Neuropathy won’t get worse. But, then the question is which one…and what are the side effects 🤷‍♀️🙈 Good luck with GP. I hope you have a good rheumy 😊

[dg70 in reply to puffyface]

Brilliant rhuemy she wrote all the drug options down so it's just research before seeing the gp. Hydroxy is keeping things under control to a degree but not helping with the neuropathy. Thanks for the heads up on duloxetine, don't want to me more tired than I already am.