Peripheral Neuropathy and Sunshine

[Katerina1]

Hello, I suffer from severe small fibre neuropathy, worst in my legs and feet. I take pregabalin and sometimes codeine which calms it at night. Find summertime difficult as even a small amount of sun on my legs and feet causes a massive flare up of pain. Even happens through jeans or skirts. I can't sit in the sun at all, stay indoors, keep curtains closed and sheet over my legs in the car. (I take vitamin D supplement to make up for avoiding the sun). Wondering if I am the only person staying indoors like this? Remember lovely times at the beach etc before all this hit. It all wears me down, especially with the continual fatigue plus IBS. The cause of my small fibre neuropathy is the autoimmune condition Sjogren's. Treatment options are limited and I've tried them all. Katerina1.

[Katerina1]

Hello Scrumbler, Thanks for getting in touch. I was diagnosed after endless tests at local hospital - Rheumatology, Neurology and Pain clinic. I have been shipped around so many departments. Small fibre neuropathy is apparently relatively common with Sjogren's. Meds I've tried include gabapentin, amitriptyline, duloxetine and tramadol, non of which helped. I now take Pregabalin and occasional top up with codeine if it's really bad at night which do help, although I have to strike a balance between pain reduction and being too sleepy. I'm told my problem is too widespread to use lidocaine patches. Cool gel pads help as well as a 'cradle' over my legs at night. Life is much better since pregabalin. I love to be active which sometimes causes a flare up. Do you suffer from small fibre neuropathy yourself? If so, how do you cope? Katerina1.

[mylady77]

Hello Katerina,

I too have to avoid sunshine. It makes me really sad.

I have a diagnosis of ME and my GP suspects fibromyalgia but not officially diagnosed. Gabapentin is helping me a little but not if I'm out in the sun. Even pegging the washing out (weirdly one of my fav tasks) can cause a flare. My pain is mainly focused in my hands and feet.

Anyway, no practical help, sorry, but I definitely 'get it'.

Best wishes x

[Katerina1 in reply to mylady77]

Hello, It must be really tough for you dealing with two substantial health issues. Sounds as though that would cause widespread pain. I have contacts with my local fibromyalgia group and have seen the devastation it can cause. I suppose your hands and feet would be in the sun when pegging out washing. I'm lucky my partner will often hang out my washing when it's sunny. If I do it I wear one of his shirts, a maxi skirt and a big sunhat. I live quite near the coast and do miss the lovely beach walks in the summer.

I'm relieved we are entering cooler days and the fierce burning has reduced substantially already. Good luck.

[Poppy1000]

Hello Katerina,

I am new on this site. I also suffer from widespread Sjogrens-related small fiber neuropathy.. I was put on prednisone and also pulses with high-dose solu-medrol, which doesn´t seem to help at all, it just makes me very anxious. Getting pregabalin now but maybe the dose is too low, it doesn´t seem to help either (against the symptoms). Do you also feel a cold but still burning sensation in combination with numbness? I also experience very dry eyes and nose/mouth, which is very disturbing. Also burning mouth and throat. Only very strong pain killers show some effects, although this is a short-term slippery slope and I try to minimize the use of them. Exercise seem to have the same effect and take walks in the evening some time before going to bed. Would be nice to have contact with someone in the same situation. /Poppy

[Katerina1 in reply to Poppy1000]

Hello Poppy, It's amazing to hear from you and realise there is someone else out there experiencing something similar. Widespread Sjogren's is really tough. I find Pregabalin difficult in that a low dose doesn't work but with a higher dose I just couldn't keep awake. You describe it exactly, yes I do feel a cold but still burning sensation combined with numbness. I'm sure you know, the pain is just horrendous. Only thing that really helps for me is codeine, but like you say it's a slippery slope so I use sparingly and have been doing this for a few years. (also clogs my gut and then more pain). My bed cradle which lifts bedclothes off my legs and feet is also invaluable. I don't know what country you are in, but here in UK rheumatologists would not give me anything. A neurologist and various GP's dismissed me as 'just depressed'. It was only after years of begging and desperation that I got a referral to a pain clinic and I at last had Pregabalin and codeine with a diagnosis of small fibre neuropathy caused by widespread Sjogren's. Mouth and throat burn too as well as eyes. Often have to peel back eyelids from eyeballs in the morning as stuck.

Do you find exercise helps or causes a pain flare up? I love to swim and dance but it can cause massive pain flare in my feet and legs, although strangely sometimes it's fine. Even sitting in my garden under a sunshade in summer causes intense pain.

I feel for you. It's hard to deal with, especially the ongoing nature. Plus people don't understand so I try to avoid mentioning anything. Hope you are getting by at the moment. Best wishes Katerina1

[Poppy1000 in reply to Katerina1]

Hello Katerina, so nice to hear from you, it is invaluable to talk to someone who experience the same thing.

If I do exercise I can sometimes feel it really bad afterwards in my feet but that is usually "normalized" until the next day and I try to stay as active as possible and take a lot of walks. I like to swim too but have not done that so much since I fell ill because the temperature in a normal swimming pool feels cold against my skin.

It is really bad to sit still for long periods, is it the same for you?

I get angry when I hear about the doctors dismissing you as depressed.. I have not experienced that myself and the doctors (I also live in Europe) have really tried, although at a slow pace sometimes.

I would love to feel sleepy from pregabalin (or anything for that matter). As long as I am on relatively high doses of cortisone (tapering down now) I cannot fall asleep at all without help. But I also understand that it can be a problem of course, with the drowsiness. Do you have problems to fall asleep in the evening because of the pain or does the pregabalin help? For my eyes, I use a viscous eye gel during the night, which I find helpful.

Best wishes /Poppy

[Katerina1 in reply to Poppy1000]

Hello Poppy, sitting still is usually alright for me, although strangely if I am very relaxed the pain can suddenly flare up. The worst time is usually after I have fallen asleep (or accidentally a bit of sunlight on my legs). Even with the pregabalin, the pain will wake me and can be really awful. Also, there's the knock on effect of lack of sleep. A small dose of codeine will usually give me a reasonable night of sleep, but have to be careful not to become dependent on it. Sometimes it's fine with no pain in the night.

Your cortisone medication sounds quite unpleasant and you seem to indicate it doesn't really help.

I don't know whether you experience the same - even a slight brush on my shins such as pulling on or removing my jeans causes a pain flare up. Have to do it really gently.

I keep hoping better treatment or cure will be found.

[Poppy1000 in reply to Katerina1]

Hello Katerina, yes the cortisone treatment has been a nightmare from the beginning, although I thought sometimes that lowering the dose made my symptoms worse. It´s hard to say. I really hope I can leave that behind me in a couple of months, until then it is difficult to adjust the other medications, I hope I can decrease the doses of the painkillers, which now partly alleviate the anxiety that the cortisone creates (and that is not good).

Are you free from pain as long as you don´t have flare up´s? I am almost in constant pain and numbness, especially in the afternoons and early evenings and I sometimes wonder if the pregabalin contributes to the cold, numb feeling.. but maybe that is just my imagination. Similar to what you explain, I also have to be careful not to "disturb" my skin but in addition I experience a cold, burning pain from the pressure of my shoes or tight jeans. Have not experienced so much sun light on my legs since diagnosed.

Also the burning mouth is tough, although cold drinks help to a certain extent.

I also hope for a better treatment, some days are really tough. I haven´t really got used to this pain as a companion in my life and I would be happy to get some tips or shared experiences regarding that. How to manage a social life etc.... I have a partner and many friends and nice colleagues but still feel very lonely in this situation.

I have been referred to a pain clinic and I hope they have some counseling and perhaps group therapies there.

Best wishes /Poppy

[Katerina1 in reply to Poppy1000]

Hello, Cortisone treatment sounds awful.

I'm sometimes free of pain, then it hits caused by anything or nothing at all - tight jeans, tights, socks, boots, temperature change, vibration of my car when driving and so on. Frequently hits as soon as I lie down in bed. For me, I think Pregabalin transforms some of the pain into icy numbness which is also very uncomfortable.

I found my Pain Clinic knowledgeable and willing to try various medications. However they said counselling or their pain management groups would not help me, so a bit disappointed. I paid for private hypnotherapy and Cognitive Behavioural Therapy. It helped to talk to the therapist but didn't help the pain at all.

It does feel lonely. My partner is good, but can't help the pain to go away. I don't know whether you find it hits your social life. I work hard to keep mine going. I tried a local Fibromyalgia group for a while which gave me a chance for a chat. I'm always on the look out for ideas.

Good luck with your pain clinic.

[Katerina1 in reply to Poppy1000]

Hello Poppy, I also meant to mention a website:sjogren'sworld.org/forums.

Although not registered I have picked up some tips here.

[Poppy1000 in reply to Katerina1]

Hello again,

Sorry, I didn´t see your second message when I replied.

Thank you very much, I will look into this website, have not seen it before.

/Poppy

[orange33]

Hi

Not sure if my neuropathy is the same,but my feet and lower legs are,not compleatly numb as i can just about walk on them. They can be ice cold with burning pain. My fingers are numb and left hand shakes when trying to eat.

My Nuero doc also mentioned Sjogrens but that has to be confirmed.

As I also have RA.

As I my be older than you(70) this came as a huge shock and yes life changing.it hit three years ago.

I have had Retuxamab infusions for this .

I do hope you find some relief for this awful condition.

[Katerina1 in reply to orange33]

Hello, What you describe sounds similar and as you probably know can be caused by Sjogren's. I don't get any shaking. Mine fluctuates and can be fine at times. Always worse at night.

In my part of the UK very little treatment is offered for Sjogren's.

I wondered whether your Rituximab infusions are for your RA and whether they help your neuropathy at all. Do you have anything else to help your neuropathy?

I agree, it's a huge shock and really hard to deal with on an ongoing basis.

I had several bad nights with burning legs and feet last week. Ffinally gave in and took some codeine (with my Pregabalin) which has settled it quite a bit.

Hope you get something to help you with yours.

[Poppy1000 in reply to orange33]

Hello orange33,

Not sure if you perhaps replied also to me. I certainly recognize the symptoms apart from the shaking hands.

I just want to wish you all the best and that new treatments will be found for all of us.

/Poppy

[orange33 in reply to Poppy1000]

Hi poppy

Yes this is a rather puzzling condition. I very much hope it will be taken abit more serious by GPs.

My emails can be abit of a hit and miss as I can only use one finger for typing, my fingers are stiff now and numb.

Best wishes.

[orange33]

Hello Katerina 1

My Nuero Doc requested the Rituxamab,not the RA doc.

The Nuerologist mentioned Sjogens as complained about my eyes getting stuck in the morning.

The Rituxamab to me hasn't really made any difference however,the infusions will continue.

This is all to do with anti-MAG antibodies.

I assumed in my ignorance this was just a blip in my life.

Before this reared its ugly head I was fairly active,dog walking,dancing etc in spite of my RA.

Please don't think I wallow in misery I don't.

Thanks for your reply.

I wish you a happy and pain free new year.