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RA, Hypothyroidism, progressive and advanced small fiber neuropathy

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Twitchy1963
Twitchy1963

Hi I've been looking for a forum where I can chat to people and get tips for treating my neuropathic symptoms. I have been Hypothyroid (Hashimoto's) for over a decade now and was diagnosed with RA three and a half years ago - sero negative but with classic synovial swelling in my hands and high inflammatory markers.

Since then I've failed to tolerate three DMARDs as well as Amitriptyline and Gaberpentin and am now taking a very low dose of Duloxetine which isn't doing much for the severe nerve pain, but I am at least tolerating after a fashion.

The SFN is severe in my feet, legs, hands and arms and I no longer sweat or produce tears and have a dry mouth and numb pelvic floor and a lot of upper abdominal stomach pain and some diziness. My autoantibodies were negative for Lupus and Sjogren's a year ago but my GP has advised me not to bother having a lip biopsy because I have RA.

Meanwhile my RA has gone into hiding and been replaced by this extreme burning nerve pain which is especially severe at night. I saw a neurologist at the end of October and he diagnosed the SFN but wants me to go back in under two weeks for an MRI of my brain plus extensive nerve conduction tests to see if this problem is immune mediated or not.

I'm not expecting to have much show up from these tests as, apart from a high ESR and CRP, I have very little that flags up in my blood - my autoantibodies are equivocal although I did have a low positive rheumatoid factor when the RA symptoms first arrived. I think, looking back, that I might have had Sjogren's for a long time - possibly even since I was a child. I wish I could tolerate immune suppressant drugs as they did help but it's been over six months since my last injection of Methotrexate and the RA has never come back in the form of severe joint pain and swelling.

Has anyone else ever had this pattern of symptoms? I find the uncertainty of how this might develop the hardest thing to handle although I'm trying to stick with my new year's resolution to live in the present and stop worrying so much!

0 likes, 12 replies

12 Replies

  • jenny55563
    jenny55563 Twitchy1963

    Posted

    Hi I have hashimotos positive for thyroid antibodies had no detectable thyroid hormone in my bloods when they found that out, I was very ill for at least two months before the meds kicked in. I felt a lot better, everything was on the up, then I started getting episodes of extreme fatigue and muscular aches, tingly fingers and toes, mental slowness, very cold hands and feet despite my thyroid bloods being good. Dry eyes, joint pain, occasional joint swelling diahrea very heavy periods.  The list goes on! I had tones of blood tests and after three kidney infections and developing a nasty allergy to cashew nuts I can honestly say I'm at my wits end. I've seen a gynaecologist, endocrinologist, gastrologist and rheumatologist.  I have had eye MRI, pituitary MRI, thyroid ultrasound, almost had a thyroid biopsy (he had the needle ready did the ultrasound to look at the cyst/nodule that had been reported am then said its thyroiditus and inflammation not a cyst nodule so he didn't need to do anything (never been so happy), had colonoscopy, pill cam endoscopy.  All I know is that my white blood cells are forever raised, I have high inflammation markers in my stools, I have raised cryoprotiens (no idea what they are) and still have high thyroid antibodies. I can't fault them for trying, the last time I saw the rheumatologist he shrugged and said I still think it's the start of Sjögren's or ra, u then said well I'd like to start my life again so what are you going to do about it, he put me on 5 week course of steroids unfortunately I got a kidney infection really high blood pressure and felt awful, so doctor reduced the steroid dose, they have helped the joints though so u will be pushing for dmards next.  It's very frustrating but I am starting to understand when it comes to being seri negative they have to really treat the most prominent symptoms, Sjögren's effects not just eyes but joints, liver pancreas etc for me it's the joints, muscle pain, infections and fatiguen and random under rib gut pain.  It's very frustrating as your are limited to what you can do when your really suffering, I went from being a science technician who loves martial arts and drawing to just about managing to read a book or crochet.  I am trying to stay positive and I hope I will be able to return to the things I love and no matter hiw tired I am I always do a half hour walk and yoga when I can.  Sorry for the ramble but that's where I am with treatment, prednisone is fab for joints doesn't really touch fatigue.  I plan on begging for hydro chloroquine next as that's the one that keeps coming up for Sjögren's did you try that one? 
    • Twitchy1963
      Twitchy1963 jenny55563

      Posted

      Yes I've tried Hydroxichloraquine as well as Methotrexate (pills and injections) and Sulfasalazine. Hydroxy was really good and I took it with Methotrexate for a year and then on it's own for four months this time last year. Only problem was that my face developed a nasty painful rash while I was on it and this then turned into facial swelling and finally my lips started to swell so I stopped and this went away. It is the least problematic DMARD for many people and isn't cytoxic so you don't have to have blood monitored regularly on it as you do with Methotrexate or Sulfasalazine. I'm told if my RA symptoms return as they were when I was diagnosed then I will meet the criteria for Biologic drugs but for now my hands are fine if a bit weak and achy - and I think that's a mix of wear and tear and small fiber neuropathy on them. Prednisolone makes me biopolar so not a good option for me. I'm really hoping that the neuro tests show that this SFN is part of my RA/ autoimmunity and this then helps me get onto more effective drugs again. But these are expensive and I think they are also nervous of the way I react to drugs too so I may have to fight my corner to be offered more disease modifying treatments.

      I don't understand why they are so concerned about RA coming back and potential joint erosion of RA but not overly concerned about the destruction of my peripheral and autonomic nervous system. Joints are at least replaceable but nerves aren't and I've been told now by GP and the neurologist that the damage sustained so far is probably ireversable. This is because they dragged their heels for so very long about getting my symptoms diagnosed and treated! I know treatment options are limited for neuropathy but if they had worked out that this is part of my connective tissue presentation then they could treat the inflammation at source rather than waiting for RA to come back in the form of synovial swelling in my joints.

       

  • charlotte1824
    charlotte1824 Twitchy1963

    Posted

    I cant help with the pattern of your circumstances but I just wanted to tell you im so sorry you are having to go through this with no relief in pain.

    I just wanted to list some other medication that is used to treat pain which perhaps you could ask to try:

    *Pregablin (worked ok for me but i had a heart palp issues on it so came off before reaching optimal dosage)

    *Savella (milnacipran hydrochloride) (Never tried it but was thinking about asking for it for pain, its an anti depressant but its been used quite sucessfully for pain relief so ive read)

    *Cymbalta (Duloxetine) Another anti-d and ive not tried either but it was on my list of things to ask dr about for pain relief)

    * Wellbutrin(Bupropion) Known as a smoking cessation aid in Uk but been used with some sucess in US for pain relief. Another not teied but on my list o ask about

    * Diazepam (Valium) Now i have tried this and i dont know how or why but it has helped, its helped me the day after ive taken it. Its has nervous system calming properties. The issue with it is this.....the day after it helped me pain comes back with vengeance, dont know if thats due to being in less pain day before and it just seems worse or what. Dr's dont like to prescribe it so i only take it when im in so much pain im hoping a truck will mow me down as i doubt i can get a life long prescription but your circumstances and dr are different so who knows. Also its addictive and weaning off is meant to be hard.

    Id also if you havent already have a full work up for electrolytes and vitamins. B vits imparticular can cause nerve pain if to low.

    Im presuming youve also tried Hydroxycloriquine (Plaquenil), have you tried brand name as well as generic as Plaquenil i tolerated, Hydroxy made me feel very sick and feel worse. 

    Again im sorry your suffereing so badly, I hope one of the above might help you

    Good luck

     

    • Tumtum1963
      Tumtum1963 charlotte1824

      Posted

      Hi Charlotte. I Have tried Amitriptyline, Gaberpentin and now Duloxetine (Cymbalta) - very prone to seriots side effects abd Gaberpebtin was awful for me so GP not keen to prescribe Pregabalin now as similar chemistry. I'm okay on lowest dose of Cymbalta but it seems to be giving me a tickly cough, drying my mouth out further and making me jaw clench for the first time. GP wants me to weather these effects as he says we are running out of options. 

      To be honest with you I'm not really wanting to snuff out the awful pain just now as if I get too laid back about it before my neuro tests I may not be sufficiently focussed to push for a proper drug that will address the cause of the SFN rather than just dull the symptoms. But some nights I would take anything I was offered including morphine to lessen the pain in hands and feet and shins so my GP is keen for me to stay on Cymbalta and raise dosage when I feel I can't cope any longer.

      During the daytimes the problem is mainly fatigue and icy wet, numb sensation in legs with burn chill in feet and toes plus hands and wrists which constantly tingle and feel weak. At night it's like I'm dowsing hands and feet in a nettle bed or even worse  - an  acid bath! You'll know what I mean I'm sure.

      The neurologist said I defintely have lost sensation in feet and hands and confirmed small fiber neuropathy but not yet the cause - probably idiopathic. No one apart from the dentist has mentioned Sjogrens to me - GP says its a given as I have RA. Thanks for other drug suggestions though I have made a note of them. 

    • charlotte1824
      charlotte1824 Tumtum1963

      Posted

      Hi Matilda,

      I get what you mean about not wanting to snuff out the pain before tests. I hope the cymbalta symptoms calm down for you which ive read happens for alot of people when the body gets used to it and can then increase dosage with hopefully better pain relief. Bear in mind though that an increase in dosage will cause an increase in side effects until again your body gets used to it. I dont have skin pain like nettles but i can understand the cold burning sensation like your leg is wet or there is menthal on it plus the cold burny feet. I have alot of burning elsewhere but its within the muscles or bones or something.

      Ive been wondering for myself if i have some circulatory issues, my heart often flutters/skips/speeds up too so if you have anything like that perhaps there is circulatory issues. I havent yet but was thinking about looking into one of those things that you rest ur feet on and its supposed to help circulation. Also there is thing which i only just heard of and bought called painmaster microcurrent-therapy patch. You put the 2 pads either side of the pain. I havent used it yet cos its 24.99 and once it runs out u have to buy a new one plus my pain isnt just 1 area. It had great reviews and its like a tens but its not and u supposely cant feel the current plus u leave it on for 3 days.

      Finally ive read before about Alpha Lipoic Acid for nerve regeneration and pain relief. I cant tell you much about it but if you google it there will be lots of info, heres 1 link re a study 

      http://www.ncbi.nlm.nih.gov/pubmed/20421656

      I really wish you some pain relief and get some positive results from your upcoming tests.

    • Tumtum1963
      Tumtum1963 charlotte1824

      Posted

      Thanks Charlotte. Even though we wouldn't wish others to suffer it is a relief to share symptoms too because they do sound fairly bonkers when described to others who don't suffer in this very particular way.

      I think I'm starting to get used to thisstuff to a degree as have had it for over 18 months now and before that my RA was bad so I may not have noticed as much. The burning is worst of all in my hands at night just now and I spend hours trying to cool feet and hands down. 

      I did move up to 40mg of Duloxetine at my GP's instructions after a week but the insomnia worsened as did the other drying out aspects so I moved back down to 20mg and resolved to wait until after my tests on 16th before moving back up again slowly. I have a really busy week next week and need to sleep more than anything as will be in transit so will take sleeping pills for a few nights. My sleep has only just settled down after many months of being awake so a drug that causes insomnia - even temporary - is far from ideal! 

    • Tumtum1963
      Tumtum1963

      Posted

      Ps I did have heart fluttering and dizziness for ages but I stopped Amitriptyline and the palpitations stopped completely so fairky conclusive! 
    • charlotte1824
      charlotte1824 Tumtum1963

      Posted

      The funny thing i find is when you explain bonkers symptoms to the Dr assuming hes heard them a million times and he looks at you like your mental!

      For the dryness ive read some stuff about evening primrose oil and there is a supplement on amazon called lacrima dry eye softgel which has good reviews but cant say i have tried it.

      I wish i could say something or reccomend something helpful to ease your symptoms xx

    • Twitchy1963
      Twitchy1963 charlotte1824

      Posted

      Thanks Charlotte. I've just been to see one of my GPs - I have two - and she was brilliant as usual. I had a list as long as my arm of symptoms I needed to put on record and meds I needed more of. If she thinks I'm bonkers she doesn't make me feel it and she printed off the letters for me from two consultants so I know what I'm going to be tested for next week - in theory anyway although I haven't actually got a clue what they will be looking for or what these tests may or may not reveal!

      I feel really sorry for people who don't feel taken seriously or who can't describe their symptoms as easily as I can with my GPs. For eye dryness I use Lacrilube at night and Hylo Forte preservative free drops during the day - sometimes hourly sometimes only once or twice a day. For my mouth she gave me a repeat prescription for Salivex pastels which I find better than Biotene because they taste lemony and not as sickly and I can suck them slowly at night without worrying about my teeth as they are sugar free.

    • charlotte1824
      charlotte1824 Twitchy1963

      Posted

      Glad you have a good GP, i can literally say that apart from the rheumy not 1 dr has been helpful. I seem to get pinballed around the different areas with the next dr being as useless and unhelpful as the next. Theres always months inbetween appointments so it takes a year just to see 2 drs and then they havent a clue and send me to someone else again! I thought id be smart and go private on a couple of occassion but turns out they are just as unhelpful!

      The Lacrima soft gel is a supplement you take daily with certain oils and igreedients to help dry eye but apart from the amazon reviews i cant say anything about it.

      Ill keep my fingers crossed for you and your tests next week xx

    • Tumtum1963
      Tumtum1963 charlotte1824

      Posted

      Thanks Charlotte. I learned yesterday that I'm to have a lumbar puncture as well as mri of brain and cervical spine and lots of other blood and nerve conduction tests so the neurologist is being very thorough at least - although I confess I'm rather terrified! 
    • charlotte1824
      charlotte1824 Tumtum1963

      Posted

      Well good luck, im glad they are being thorough. My mum had nerve conduction test and i think that was fine, ive had mris and they are easy peasy unless ur clostrophobic. I would myself be nervous for the lumbar puncture but as its a booked appointment im sure they will ensure your all numbed up and comfortable during the procedure with minimal pain. I think the times a lumbar puncture is painful is during emergency circumstances like suspected meningitis where they need to act quickly and dont numb the patient prior. Perhaps you could ask for a sedative to take prior to the LP? I just had a quick look online and alot of people say its not too uncomfortable. 

      Let me know how it all goes

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