Small Fibre Neuropathy and PMR

[susanspurs]

Hi does anyone know if there’s any link between PMR and small fibre neuropathy? I have it quite badly in my feet and lower legs and slightly in the tips of my fingers. Another long shot - could the small fibre neuropathy be connected to long term use of steroids - since 2014 when my PMR was first diagnosed? Some help would be appreciated. Sue

[TheMoaningViolet]

Hi, do you take any treatment for it? Both my mother and aunt have it and I don't think they have managed to find any treatment that works? I would be grateful for any suggestions on management as well. Sorry to budge in on this post.

[susanspurs in reply to TheMoaningViolet]

I’m sorry that both your mother and aunt have it but there’s nothing that can be done for it unless it’s caused by an underlying health condition that can be treated. Managing it is difficult and I’m afraid I don’t have any tips.

[PMRpro Ambassador]

I don't think there is any fixed link between PMR and peripheral neuropathy unless the inflammation is poorly controlled and blood flow to the nerves is poor plus PMR can lead to an increased risk of peripheral vascular disease and that can be linked with neuropathy.

lamvascular.com/diabetic-ne...

Have you any other signs of PVD/PAD such as calf cramping after walking a short distance?

[susanspurs in reply to PMRpro]

My PMR is managed reasonably well. Although I am atypical so my CRP and ESR are normal. So it’s always based on my symptoms and steroid response. I do sometimes get calf cramps at night and sometimes when swimming but never walking. Thanks for the link.

[susanspurs]

Sorry for the tardy reply. Thanks I’ve seen that link. Mine is idiopathic too. Two nerve conduction studies over the last 10 years have been normal. Although I have a number of medical issues that could all be linked to Lyme disease - I was bitten by a tick in a forest in Latvia more than twenty five years ago. Two Lyme tests were negative. My neuropathy started in my feet and is now travelling up my legs. I can describe it as my short socks have now turned into long socks. Problems with the tips of my fingers too - makes pill dispensing difficult. Nothing can be done for it if it isn’t caused by an underlying health condition.

[susanspurs]

Actually I have B12 injections every three months following major bowel surgery in 2012. My B12 is now always within the normal range. High after the injection then after a few months is at the lower end of normal. I did notice after the last injection walking barefoot was less uncomfortable. I agree about listing things according to difficulty and my small fibre neuropathy is travelling up the list.