Burning and numb feet.

[wsjkcj1]

Need some advice on how to treat numb burning feet. Having a flare up with sjogrens and been having leg pain and now right foot is tingling and some burning, almost the same sensation as if I'd sat on my foot and put it to sleep but I haven't. I told my Rheumy about it this week but she said it was a flare up and didn't really tell me what caused it or how to relieve it. Any advice is welcome.

[Beverly]

Do you get the same sensation in your hands? if so you need a referral to a neurologist, the symptoms you are presenting with are the start of Sjogren's Peripheral Neuropathy, the burning feet ,tingling and leg pain, means Sjogren's has started your immune system attacking the nerves in your legs, you hands will be next, they gave me Prednisone to suppress immune system so the nerves can repair themselves.

[Xxxxxxx in reply to Beverly]

I only get this in my feet. Sometimes it's hard to sleep as my feet are on fire. My doc said I just needed to get up and walk around.

[wsjkcj1 in reply to Xxxxxxx]

does that help if you walk on it?

[Xxxxxxx in reply to wsjkcj1]

No, it doesn't. Nothing does.

[wsjkcj1 in reply to Beverly]

This all just happened recently. I'm assuming my SS flared up and that first causes my thyroid to be hyper so I had extreme fatigue to where I couldn't hardly get out of bed and then a day later I started getting a burning sensation in my arm, leg, feet and hands. I swear I even felt a burning feeling in my forehead for a bit. The burning feeling in my hands stopped after a another day or so and I got my Rheumy to call me in a steroid so after taking that for the week I'm feeling better overall but as my steroid ended and I'm now getting the burning and tingling in my feet again. I brought that up to my Rheumy but she just told me I was having a flare and the steroid should help. Are steroids what is prescribed for this problem if it is peripheral neuropathy? My mother has that condition without SS and she is on Gabapentin but she also has seizures. I have had a few nerve twitches here and there also.

[movinalong11 in reply to wsjkcj1]

Walking when mine are doing this only makes it worse. Do you feel like your feet are looking darker? I have been prescribed Gabapentin for years for the nerve pain, tingling, loss of feeling/turning white/cold especially if I am in cold temps.

[DentalLoser in reply to wsjkcj1]

I also have peripheral neuropathy pain,w a severe burning kind of sensation, mainly in lower legs that my neurologist said is definitely from my Sjogren's Syndrome. Fortunately it is intermittent rather than constant(&aggravated by SSRIs and sleep deprivation), and I've had excellent results with Gabapentin as needed. I have Osteopenia so my Rheumo is reluctant to prescribe steroids. I also know someone with Fibromyalgia PEP all over and she also has good rests with Gabapentin. Good luck, Basil in USA/alias Dental loser

[wsjkcj1 in reply to Beverly]

you didn't have to take anything for the nerves like gabapentin?

[Samaka in reply to Beverly]

i have both legs and hand affected , anything help? this peripheral neuropathy is curable? i'm not comfortable sitting , sleeping or walking what can i do any advice please?

[agypsy]

I have the same it is peripheral neuropathy or small fibre neuropathy.

[wsjkcj1 in reply to agypsy]

I'll check into this. thank you

[Samaka in reply to agypsy]

anything helped?

[wsjkcj1 in reply to Samaka]

the neuropathy has eased up and not having burning anymore. Rheumy thinks it was due to my thyroid being hyper more than my Sjogen's flare up but I'm not sure. I'm still having random nerve twitches and my thyroid is normal again (for now) It's such a mystery what causes what, its frustrating.

[Samaka in reply to wsjkcj1]

the drug taken was just for thyroid or something specefic for neuropathies?

[wsjkcj1 in reply to Samaka]

haven't had any drugs for either thyroid or neuropathy since thyroid is back to normal and the nerve twitches are minimal. Probably won't take anything until it gets worse.

[Samaka in reply to agypsy]

how to differentiate between small fibres neuropathies and peripheral neuropathy?

[Ruth59]

Have you had an MRI of the lower lumbar/sacrum/Coxxyx as it can also be a sign of Tarlov Cyst disease which often goes with Connective Tissue Disorders like Sjogrens. These are cysts in the nerve sheath and are usually found on the sacrum.

[wsjkcj1 in reply to Ruth59]

no I haven't. this just started a couple of weeks ago. My Rheumy didn't seem overly concerned.

[MrsdeK]

I have very similar symptoms, & get numbness in my toes, the burning feet really gets to me, but so far have not been able to get Dr's to investigate, at least I don't feel so alone with the symptoms after seeing some of the posts. So nice to hear that other's have these things happening as it is easy to feel alone. Glad for those who are actually getting a diagnosis !

[movinalong11 in reply to MrsdeK]

My family Dr has been after me to have nerve conduction tests done. As you said, MrsdeK, my rheumy doesn't seem too concerned, I have always tried to make sure that my hands and feet don't get too cold.

[weathervane]

Hi there, i have similar probelms with feet, particularly at night. I have a feeling with me it is raynauds because as well as the burning i find that some of my toes turn white then blue and numb. I havent discussed it with rheumy yet so at the moment i keep my feet warm and massage in moisturiser.

[puffyface]

Oh it's so uncomfortable isn't it? Do you get it in your hands too? It keeps me awake at night...that and thudding heart beat. Do you think it has something to do with the sjorgrens or is it something else? I have stone floors in my kitchen and I put my feet and hands on there...if it's at night I use a mint gel which helps to cool them down. I was wondering whether having a magnesium salts bath would do any good? I'm going to ask my doctor next week, so will post what I find out. X

[wsjkcj1 in reply to puffyface]

Yes I think it's all due to my immune system attacks. The burning feet and hands was result of neuropathy caused from immune attack and the thyroid was hyper because of immune attack. some of those symptoms have calmed down the past several days. Now I'm only having leg muscle cramps and some odd swelling and redness on the bottom of my feet. does that happen to your feet?

[puffyface]

Yes!! It's making me feel really sad. I have so many doctors looking at different things, and yet nobody seems to be able to work it out...or care! I feel quite teary this week and yet I know that I don't have major issues like lots of people on this site. I would just love somebody to be able to help. Trying to sleep at night at the moment is almost impossible. My heart is banging, my legs aching and my feet and hands burning! So boring. I almost called the emergency helpline last night because I was scared and my husband is away. Anyway...I'm very lucky because I don't go to work and so can sleep during the day if I need to. Actually, that means that you slightly isolate yourself, and end up feeling a bit lonely.

Who knows what to do!!? What you say makes lots of sense. Perhaps the banging heart beat is because of immune attacks and changing from hypo to hyper?? I don't know enough about it. All I know is that this site has really helped me not to panic and given me lots of amazing advice. I hope you are ok? Always here if you need a chat....and in the meantime, please look after yourself. Stay stress free and sleep whenever you can.

Big hug, Lx

[wsjkcj1 in reply to puffyface]

I think all of these problems are driven by the same immune system attacks but since they happen to different parts of the body, you have to see different specialist instead of one person to treat the root of the problem as a whole. do you suffer from panic attacks? I find when I'm having a new symptom and especially when it involves my heart pounding or racing I get scared and tend to panic. That makes it worse. I try to take deep breaths and calm myself and that helps. I do work which is good and bad because I missed several days and work performance suffers which I feel bad about but on the other hand, I am around co-workers/friends and can talk about my problems. This community and people like you have helped me a great deal also. I consider you, Weathervane and twitchy toes my friends and can always count on you to respond to my post so thank you! Hope you feel better.

[puffyface]

Thank you. I know I'll feel better soon..it comes and goes a bit. My husband is coming home from abroad this evening, so that makes me more cheerful anyway! I am going to see all of my doctors over the next couple of weeks and will ask everyone what there is to be done about this burning sensation. I'll let you know if they have any advice. Have a lovely weekend and take good care of yourself. Lx

[wsjkcj1 in reply to puffyface]

please keep us updated.

[bones-bones]

I have peripheral neuropathy. I now take Amitriptyline which has made a huge difference. And gives you a good night's sleep. To begin with it makes you feel a bit dozy but that should pass so it's good to persevere and not give up. Good Luck !

[movinalong11]

I am having the same problem with my feet. Told my rheumy, he said the same thing yours told you. I've also noticed that the tops of mine are turning darker, and am having problems with my legs getting large ugly, bloody bruising on them, if I only lightly rub against something. It mostly happens in my sleep! To help my feet feel better, I rub cooling lotion like aloe on them, and just lightly massage them w the aloe until they feel some better.

[Ferginja]

Hi, I am new. I began my journey in 2010 when I fell ill with MCS - Multiple Chemicle sensitivity. So lucky as I found one of a couple of doctors who were skilled in gene therapy. I was found to have MTHFR - nicknamed mother/father. Apt as I had the faulty gene C677T from both plus A1298 from one. I had other minor things then had severe neuropathy for the whole of my body and especially my face. When found also to be gluten and lactose sensitive I eliminated it from my diet and as a result the neuropathy is quiet now. B1 is known to help. I have B12 shots once a week and have a regime of vitamins and antioxidants that keep me well. The only prescription medication other than chemists is an anti epileptic in the lowest dose. I suffered severe migraines which is an indicator but now eliminated by taking magnesium. I lost my specialist when he had a stroke and my wonderful doctor retired. He suffered from fibromyalgia so was keeping up with all the new research. I would like to find another doctor who really understands SS as I do not suffer from dry mouth or eyes etc but have difficulty with my lungs. At present I find that at night and in the morning on waking I hurt everywhere - not neuropathy/arthritis but as soon as I get up and move around it all goes away. Very strange.