Neuropathy & treatments: Does anyone... - The Australian Sj...

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Neuropathy & treatments

moisture
moisture
12 Replies

Does anyone else know whether there's any connection with Peripheral Neuropathy.?If so I'd like to know about drug free treatments?

moisture

12 Replies
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Lucyand

I too have Periphial Neuropathy from Sjrogens Syndrome I am seeing a Neurologist on Feb 1st to see if he can halt the damage already done to the nerves in my lower limbs and feet. I am not on any medication at present but suffer the normal things associated with Sjrogens, dry mouth, eyes and everything else in the body too. Skin has to be smeared in moisturiser twice a day.

Good luck with everything.

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Megansheart

Hello Moisture,

Peripheral Neuropathy was my first symptom of Sjögren’s Syndrome. Following that, I had all sorts of neurological symptoms like loss of balance, fasciculations, gastroparesis, oesophageal dysmotility etc. Dry mouth and dry eyes came significantly later.

Have you had your B12 levels checked? Perhaps regardless of what your levels are you could take some B12 supplements for awhile to see if your PN settles down however I doubt that it will help if this PN is SjS related. I know there is a lot of controversy about the normal parameters for B12 being set too low which makes people try taking supplementation. I took sublingual B12 for a couple of years in the hope it would help and certainly my levels rose very well, however it made no difference to my PN.

Other than that I have no idea. For good or ill I have gone down the Pregabalin route which among other meds keeps things bearable. I have been taking Pregabalin (Lyrica) for about seven years now.

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moisture

Thanks Megansheart

A neurologist put me on (Neurontin)100 mgs but I felt terrible.

I now take just 25 mgs of Pregabalin, which somewhat dulls symptom but I'll probably double it if I need to. I'm rather sensitive to medications

& I already take medications for irritable bladder & a tremor which are all neurological conditions.

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Twitchytoes

I’m in much the same boat as Megansheart. Only Pregabalin made me feel too dizzy so I’m now on the only one I haven’t tried called Carbamazapine.

It’s licenced for Trigeminal Neuralgia which I also have in atypical form - so I’m mainly taking it for this. It seems to be working well although I’m still only on half dose and I’m a bit concerned that it apparently interferes with the effectiveness of my thyroxine so regular blood tests will be required for this. I’m usually averse to trying drugs these days but the pain in my face was just too intense to bear anymore.

Neuropathy is quite common in Sjögren’s although it tends to be small fibre rather than large - so doesn’t show up in nerve conduction studies.

I haven’t found natural remedies that help although gluten free is thought to be best for us and I agree you should keep a watch on your B12 levels.

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Yllek
Yllek
in reply to Twitchytoes

Hi can I ask about your atypical trigeminal neuralgia please?

I have terrible tongue numbness which is intermittent and is much improved with warfarin but gets worse again when my INR lowers.

Nobody has yet been able to figure this Out! I’m seeing Dr Price next week so I’m hoping she may have some answers.

I’d be interested I hearing your symptoms.

Thanks

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Twitchytoes
Twitchytoes
in reply to Yllek

I still don’t have a diagnosis of TN and recently had a facial EMG for very rare trigeminal neuralgia/ ganglionopathy which I don’t have.

I believe it’s small fibre neuropathy of the face in my case - perhaps many with burning mouth syndrome (BMS) which is mostly idiopathic - have seronegative Sjögren’s. My sister has no diagnosed autoimmune disease but she does have classic BMS.

Best of luck with Dr Price - she’s very good.

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Yllek
Yllek
in reply to Twitchytoes

Thanks for replying. I hope you get specific answers one day.

My anterior tongue is numb a lot and improves with warfarin but has never disappeared. I’m hoping Dr Price can shed some light on this odd symptom x

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Megansheart

A comment about Pregabalin (Lyrica).

When I first started taking Lyrica, for peripheral neuropathy, I took a divided dose, am and pm. I started feeling so ataxic (unsteady) I could barely stand or walk a straight line. It was not so much dizziness but what I felt being drunk would be like 🤭. However a side benefit of Lyrica was that it helped me sleep through the night ........so....a few weeks later I got the bright idea to ask the doc if I could take my whole dose at night before bed. I reasoned that if it caused me to be unsteady it wouldn't matter at night and I'd be safer.

Taking it only at night worked really well for me for some years. More recently we added 75mgs to the daily dose but in the morning and I felt slightly ataxic for a few days then it settled. Currently I am on 375mgs of Lyrica per day, I cope very well with it now.

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moisture

Thanks Megansheart, I'll keep that in mind, I take my low dose at night

I start with an exercise physiologist today. My chiro is a trained neurological chiropractor who will also help now she has all my results.

I also work on my mind with positive meditation ....keeps me busy.

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Praha
Praha
in reply to moisture

I have some peripheral neuropathy in my toes only. Had been informed by podiatrist that she’d heard anecdotally that firm shoes/ stockings or socks had helped. I have found this helpful but not great in the hot weather!

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moisture

Thankyou Praha

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Debbweb01

Hi I have SS and I'm in a flare up now! Going crazy with burning tongue, swallowing, tongue cuts from dryness dentist said, and now lip burning and cold sores! My hands go numb! I drop everything! I had no idea that peripheral neuropathy had to do with SS! I see many of you are on medication for this! I'm very sensitive to drugs! Can't takeceven lowest dosage of Gabapentin without feeling drunk! My skin very dry! Had no idea this too was related to SS? I actually have cuts on fingers from dryness! Nothing helps for that! Vaseline give temporary relief! Wow this is a very informative site! I have an appointment with Rheumatologist on April 1st, who happens to specialize in SS! Just a question Do any of u find that when u tell doctors that u have SS they look at u like u have 4 heads! They seem to know nothing about this! Why is that! It's almost like they think ur crazy? Even though April I'm glad to be going to Rheumatologist just wish sooner cuz flare up getting to me!! The only docs that have helped me with SS have been my oral surgeon and my dentist! They gave me temporary relief with lidocaine and Magic Swizzle for my tongue! Thank You for all the information! GODSPEED

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