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Neuropathy and Sjogren's

Katerina1
Katerina1
26 Replies

Hello, I'm new here. I struggle with very painful widespread small fibre neuropathy related to Sjogren's. Nights are the worst with burning, clawing pain and electric shock sensations. I take pregabalin and codeine for the pain. I feel very alone. Is anyone out there dealing with similar issues? Katerina1

26 Replies
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lupie-Cathy

Hi Katerina welcome I too have small fibre neuropathy but mostly just on my legs and feet. Mine was really bad like yours but has settled somewhat or maybe I’ve just got used to it! I don’t get the shocks anymore more like heavy tingling. I’m on gabapentin for mine but it doesn’t seem to do much have started to decrease my dose and it’s not got worse I actually wonder if the gabapentin was making it worse! I’ve not tried pregabalin but perhaps it’s similar to gabapentin I was on a very high dose and have managed to cut it by 2/3rds but I’m struggling with coming off the rest not because of the neuropathy but because I tried it over the winter and the joint pain got worse! Going to try over the summer when I can move easier so have stuck at present dose for now. Hope you get some relief. You definitely aren’t alone! Hugs

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Katerina1

Hello Lupie-Cathy, I'll re-send this as I think I clicked on the wrong place to reply.

Thanks for getting in touch. I was on a high dose of gabapentin for ages but stopped as it wasn't helping at all. The pain clinic switched me to pregabalin combined with a small amount of codeine so now I mostly get a reasonable sleep at night plus less joint pain. Cool gel pads help too. Glad to hear yours has settled somewhat. I find it does fluctuate. Good luck with yours.

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djt1

You're not alone. I have idiopathic peripheral neuropathy - in other words, we don't know what caused it. Not sure if it is small fibre or large fibre as there is no way of treating either so didn't seem a lot of point in finding out. I think I am quite lucky as mine is just a continual background tingling and feeling of numbness together with hypersensitivity which varies in intensity. Sitting down or lying down makes it worse, unfortunately! I don't take any drugs for it at the moment, only supplements, but I don't know if they help or not. It is bearable, but the worst thing is that it never goes away and the knowledge that it never will. Oh well, mustn't grumble!

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Katerina1
Katerina1
in reply to djt1

Hello dgt1, Thanks for your reply. Good to hear that yours is not too painful. You are right that, strangely, sitting or lying down tends to make it worse. There is no cure and the medications can just damp things down a bit. After years of trial and error with medications I mostly cope although the pain has often been massively intense. There are worse things though. All the best.

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BigBill

Katerina

you are not alone. I recently was diagnosed with Sjogrens but it is not the only cause of my neuropathy. I am taking cymbalta and a drug often prescribed for seizures. The seizure medication has the side effect of making you drowsy and it allows me to sleep through the night even when the nerve pain is active. Speak to your pain management specialist. I had to go this route as I can't take Nsaids due to a heart condition. Just lean into the wind and keep moving forward.

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Katerina1
Katerina1
in reply to BigBill

Hello Big Bill, Thanks for replying to me. Cymbalta (duloxetine in the UK) is supposed to be very helpful for neuropathy. My Pain Clinic prescribed it but unfortunately I couldn't cope with the side effects. The pregabalin that I take is also used for seizures and combined with the codeine allows me to mostly sleep at night. I don't know how long it took you to be diagnosed with Sjogren's. It often takes ages and took over nine years for me. The dry eyes and mouth doesn't bother me unduly and I have very good eye drops.

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Foxy07
Foxy07
in reply to Katerina1

Hi, I have recently been diagnosed with small fibre neuropathy and it’s been suggested that I try the anti seizure meds. Unforgivable am very wary trying any new drugs as my stomach is so fragile, I can’t take gabapentin or pregabalin or any others from that family. Can you advise on the side effects of the seizure meds. Did you have B12 injections?

Thanks x

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Katerina1

Hello Lupie-Cathy, Thanks for getting in touch. I was on a high dose of gabapentin for ages but stopped as it wasn't helping at all. The pain clinic switched me to pregabalin combined with a small amount of codeine so now I mostly get a reasonable sleep at night plus less joint pain. Cool gel pads help too. Glad to hear yours has settled somewhat. I find it does fluctuate. Good luck with yours.

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Foxy07

Hi, I am also new and desperate for some advice.

I was recently diagnosed with vitamin b12 & d deficiency along with osteoporosis & a T9 fracture. After a recent visit to the celiac clinic I was diagnosed with small fibre neuropathy, I had my 6 b12 loading jabs and felt so much better. It actually cured my tinnitus, balance issues, stomach & face neuropathy, diarrhoea, sore burning dry eyes & brain fog.Sadly my feet and hands are still very painful and as you are worse at night or when resting.

My stomach & face neuropathy came back after 2 weeks and 3 weeks my brain fog came back. I am gutted I really thought I was getting somewhere. I spoke to my Doctor today and she said I have to wait another 2 months for my next B12 injection.

Have you had any relief from any supplements or treatments?

Huge thanks in advance.

Xxx

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Katerina1
Katerina1
in reply to Foxy07

Hello Foxy07, I have never been offered vitamin B12 jabs, just a mumbled 'maybe you are low on vitamin B' from doctors. Heard it can help small fibre neuropathy so recently started buying a multivitamin supplement. No difference so far. Like yourself I'm really afraid of effects of medications on my stomach as lots of bad experiences. Web searches re small fibre neuropathy suggest accompanying stomach issues although doctors don't seem to be aware or interested in these. (I have chronic diarrhea and nausea as well as severe extensive small fibre neuropathy). You ask about side effects of anti seizure medications. I think gabapentin may have worsened my diarrhea, but was on a huge dose. It didn't work for me at all. No stomach issues with pregabalin which helps a bit. I accustomed myself to both by starting with tiny doses, split the capsules (probably doctors would not approve) and increased dosage very slowly. Initial side effects were foggy head, feeling drunk and tired but they did reduce after a few weeks. Pregabalin at larger doses worked well for me but I couldn't keep awake, so I've compromised with a lower dose. A little codeine is the only thing that calms it for me at night.

You mention burning eyes and brain fog and I wonder whether you have been tested for Sjogren's, which I have - if you look it up you will see a main symptom is burning eyes caused by dryness. I am prescribed preservative free eye drops. Hope you can find some things that help your issues. Best wishes Katerina1

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Foxy07
Foxy07
in reply to Katerina1

Hi Katherina, I also tried the gabapentin etc and they helped with my pain a little but caused chronic sore dry eyes.

I had my B12 loading doses and felt great during the first four and have been left feeling exhausted. My Doc gave me an early injection after 6 weeks as my symptoms came back so early. More blood tests today and now they are looking at Lyme disease. Can I ask how your small fibre neuropathy was diagnosed, did you have tissue testing?

Many thanks

Xx

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Katerina1
Katerina1
in reply to Foxy07

Hello Foxy, In reply to your question, It took over nine years of extreme pain before my small fibre neuropathy was diagnosed. For long time I was told it was depression. Nerve conduction tests were negative. Various other tests negative eg lyme, phaetochromatosis, porphyria etc. In desperation I paid to see a rheumatologist privately. It was £250 for a 17 minute consultation in which he seemed quite irritated, shrugged and suggested paracetomol - I won't be going down that route again. After much begging on my part my GP referred me to the Pain Clinic at the hospital. I gave them a print out of my symptoms and they immediately said it was a classic case of severe widespread small fibre neuropathy caused by my autoimmune Sjogren's attacking my small nerve fibres. Told me they don't do the tissue testing because it is unreliable. (I live in a rural area, but I think King's College Hospital in London does more for these kinds of conditions). They then experimented with various combinations of medication for me, but as you probably know there is no cure. I try to keep telling myself there are worse things. The diarrhea is horrible, such a worry going out, plus I am always tired out. I've always been very active so try to push through it.

Hope you get somewhere with your tests.

Bests wishes Katerina

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Pudsta1

Hi i basically woke up in dec 2016 with tingling in both feet within hours it spread to my knees then into both hands within 12 hours ,its been there none stop not a second without since ,i dont know what my hands and legs feel like without pins and needles it is mental torture ,my finger tips connect every touch i make into my right foot it intensifies the tingling ,im currently on 900mg of gabapentin its not doing anything to help this its horrendous

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Katerina1
Katerina1
in reply to Pudsta1

Hello Pudsta, It sounds as though your constant tingling/pins and needles has been going on for over two years now. You don't mention whether you have had any tests to try to find out the cause. Doctors sometimes prescribe much larger doses of gabapentin although over 2,000 didn't help me. I wonder whether you have ever been referred to a pain clinic for other ideas to help. It must be very difficult if it is all the time. I also wonder whether you have found any times when it is a bit worse or a bit better. For example, any sunlight at all on my legs causes the pain to fire up like mad. I even have to put a towel over my legs in the car and going on the beach in the sunshine or any sunbathing is completely out. Best wishes Katerina1

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Foxy07
Foxy07
in reply to Pudsta1

I feel your pain, mine was bad for years but only when I was in bed & now it’s constant. It’s is just so exhausting, I now have a numb big toe on my right foot and my bottom lip & chin are also numb.

Doc is great and is now looking at Lyme disease, blood tests done so 🤞 crossed. Have they given you any idea as to what your problem is, I’m just fed up just because it can’t be seen people think it’s not real.

Good luck.

X

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Pudsta1

Hi katerina ,yes its been a long time 28 months of it none stop not a srcond without it in all limbs ,ive had every test 2 brain mri scans a year apart ,2 spine scans a year apart ,4 nerve studies 2 emgs tons of bloods all normal ,it cannot be explained ,neuro told me hed never seen anyone like me in his 30 year career other neuro i saw said hed agree the same nobody like me ,yes similar but nobody with it lasting this long permanent , occasionally it will be milder and i can cope thats maybe every 4 months a week might be better then it goes nuts into a flare thats horrendous ,i just dont know how this happened i had no problems before at all never ,ive read loads about milder forms of guillien barre syndrome but neuros say no ,without treatment this is here for gd and i have no quality of life im still strong cud walk miles no pain its just driven me mentally insane its worse when sitting my legs feel like theyll nlow up or laying down they go crazy ,nobody is interested as theve never seen anyone like me yet youd think that wud mean to try to find out or find someone who cud help its crazy

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Katerina1
Katerina1
in reply to Pudsta1

Hello Pudsta, Sounds so hard. You are right they should try to find out or find someone or a way to help. Afraid that's what they seem to do if they don't know what is going. It took various specialists nine years to diagnose my cause as an autoimmune condition. Very little research going on in this area too - probably not much money to be made, although I do keep an eye out for any new research or possible cures. New discoveries in medical science all the time, so I keep hoping. Best wishes.

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Foxy07
Foxy07
in reply to Pudsta1

Oh Pudsta, can I ask how your thought patterns are. Do you struggle with your words at all? Have you been tested for neuropathy or similar? What about Lyme disease?

Xx

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Pudsta1
Pudsta1
in reply to Foxy07

Hi foxy ,my husband had spirochetal disease in his bowels seen on colonoscopy in 2003 hes never been right since this comes from the family of lyme bk then he was given a month of antibiotics ,hes got chronic fatigue aches all over his body and had to leave work for good in 2016 after 25 years there , i havent any of that i just woke up like this in dec 16 i have mentioned lymes numerous times i was sent to an infectious disease clinic to see if lyme can be sexuality trabsmitted the consultant had left his pc on and had googled can lyme be sexual transmitted and had clicked on the first link ,he told me no but if hed clicked other links hed of seen it can be theres loads of cases little is known of lyme here it is dismissed my lyme test was neg ,but so are many here i was told armin labs in germany is the only reliable one ,i saw my dr agsin today as this is driving me insane ,shes now sending a referel to kings college hospital in london to look at me ,nobody has had such an acute onset of this thats stayed permanent its crazy what happened to me but my husband always insists its lyme related

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Foxy07

Hi, just wondering anyone has tried CBD oil to help with your pain? I know this would be masking my real problem what ever this may be but I am desperate for help.

Xxx

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Pudsta1
Pudsta1
in reply to Foxy07

Should of sed i have no other problems no brain fog im strong on my legs no fatigue just constant pins and needles none stop in all limbs

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Sammi19

Katerina your post has appeared like an answer to my prayers I’ve had increasing neuropathy since last year and nerve conduction tests and needles in muscles have proved positive to the neuropathy but no one appears to be really helping. I have Lupus and sjorgens as my symptoms increase it’s just ‘the neuropathy’

I am at my wits end to be honest.

I have had steroid injections into knees. Can’t feel feet, on crutches. Fall if not careful. Losing ability to use arms well which bodes badly for my crutches. My muscles in my thighs will barely let me stand at times and i can literally howl with the pain standing. Climbing stairs can be total joke and the decision of which leg to try can take 10 mins!

At present Hands are becoming clawed and holding drinks is not easy. Can’t open bottles or do fine finger movements.

In bed terrible muscle pain and bone pain (?) esp in legs and back.

I’m on zomorph with oramorph to top up and auto immune meds for lupus but I’d prefer to just be out of this very disabled mess.

I do cope as well as I can. I have good days and bad days depending on how tired sore etc. I feel so frustrated as I’d be doing so much more without it and mentally I can do it. Sorry for long message but actually can’t believe I’m not on my own. X

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Katerina1
Katerina1
in reply to Sammi19

Hello Sammi19, It sounds as though you are having a really tough time. Your neuropathy sounds severe and wondering what type of specialist/s you have been seeing - rheumatologist or neurologist, pain specialist? Also have they checked whether anything else is going on? Did you have MRI/CT scans etc? Have you had any help with physiotherapy? It does feel like no one understands the pain and exhaustion and I think many specialists don't know much about these issues. That's why I wrote a very careful description of and printed it out for my first visit to the pain clinic.

I also had carpal tunnel issues, now very weak after ops on both wrists - this is common with Sjogren's. Even trying really hard it is very isolating. I find others don't know what I'm talking about and expect me to be better in a few days. I try to make the most of the better days and not mention anything. My partner is supportive although he has his own health issues. It is strange, my loss of feeling and pain fluctuate quite although certain things set them off like the vibration of a car or bus journey and sunlight or of course nothing I can pinpoint. Often unbearable pain at night. I call it 'call an ambulance pain', except I know it would be a waste of time because they can't really do anything.

Sounds like you are on really heavy meds which must affect your functioning too.

I know I'm lucky I can still drive and still swim, but my passion for dance has been hit as it just hurts so much. Like you, I didn't expect any of this and still can't believe it is happening.

Hope you are having a reasonable week and find this site useful for tips.

Sorry this is a bit garbled. Katerina1

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Nanajhpa

Yes! I refuse the gabapentin and similar drugs because they turn me into a nonthinking zombie who has a problem with alcohol (and I don’t even drink!).

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Katerina1
Katerina1
in reply to Nanajhpa

Hello Nanajhpa, Yes I know the feeling. I'm a lifelong non drinker but been so desperate with the neuropathy pain was reaching for the brandy during the night. Helped to knock me out so I could get some sleep and numbed things a bit. I'm sure others must turn to alcohol too. I have managed, with difficulty, to stop doing this as worried what damage & getting hooked, plus caused stomach upsets. Tried antihistamine to help sleep. Yes - feel like a zombie on pregabalin and codeine top up, but coping without feels impossible. Always adjusting things. Best wishes Katerina1

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Nanajhpa

Good luck with that! I can’t stand alcohol in any form. I have a propensity for throwing up easily!

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