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So what do people do for the neoropothy they have? I have ot been diagnosed with SS but I have dry eyes and pins and needles pain in my hands and feet sometimes. Not bad, very tolerable. Will it get worse over time? I also have aches sometimes in my arms.
0 likes, 13 replies
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pam_87693 AndreaB1967
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lily65668 AndreaB1967
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I had this quite badly in the early days of Sjogren's. I didn't do anything about the on-and-off tingling and my doctors weren't interested anyway. I eventually lost all sensation in one big toe, so after that I had to be a bit careful when cutting the nail, and checking that the toe wasn't getting injured - just like a diabetic would. By that time I'd stopped seeing the rheumatologist as I wasn't prepared to take the medications he wanted to prescribe, and was just seeing my GP. She said the numb toe was down to old age - although I was only about 50 at the time.
In my case, the tingling went away after a few years and has only rarely returned. Amazingly, I suddenly regained complete sensation in the affected big toe from one day to the next, and after 10 years. I know this shouldn't be possible but it happened! I've never had any problem with that toe since.
I had a bit of a problem with tingling and loss of power in my left hand last year, together with nerve pain in my left arm, but finally tracked it down to wearing my fairly heavy shoulder-bag across my body, taking the weight on the left side of my neck. Ever since I invested in a small back pack, this has cleared up.
Sjogrens causes all sorts of aches and pains in joints, muscles and tendons I'm afraid. I've had pain in the tendons and muscles of both arms for the last couple of years, but it's finally clearing up now.
In my case my symptoms have varied a lot in the 22 years I've had SS (though only 12 years diagnosed, like a lot of sufferers). At first it was dry mouth and peripheral neuropathy. Then the mouth improved and I started having problems with dry eyes. That was followed by Reynaud's syndrome, then carpal tunnel syndrome. All of this has improved a lot in recent years - in fact I had six years of almost total remission until a year or so ago - but myalgia and tendinitis have now taken over. The only constant over the years has been intermittent attacks of RA, but none of them as bad as my first attack that came out of the blue at 37, before I was diagnosed with Sjogrens. Fortunately, the painful tendinitis has got a lot better in the last month and I feel it will soon go the way of the other symptoms - doubtless to be replaced by something else!
There are all sorts of medications you can take for SS. Some people on here swear by them. I'd suggest looking up Plaquenil (hydroxychloroquine) and methotrexate to check out how they work and the side-effects, which might help you to decide whether you want to go the medication route or not. I've never taken any meds other than homeopathy and an occasional ibuprofen and my symptoms have never got worse. They've changed over the years so it's difficult to compare now with then, but I'd say I'm actually better now than when it all started. But we're all different, and we all have different approaches to our condition.
AndreaB1967 lily65668
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lily65668 AndreaB1967
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I'm not in any way dismissing the sufferings of some people on this forum, but it's always worth bearing in mind when contributing to any forum on a specific condition that you're more likely to encounter those who are worst affected. I don't know what the statistics are as I've never met anyone with SS outside of this forum, but I suspect that for every one person who suffers badly there are a whole lot more whose symptoms are so mild they wouldn't think of coming on here to discuss them. Also, a lot of people never get diagnosed. I think the 10 years it took me to get a diagnosis is about par for the course.
Try and work around your symptoms rather than kicking against them or feeling hard done by. If you have a congenital heart disease, I'm sure you're very good at doing that anyway. On days when you feel really tired and achey get some extra rest, but try to take enough exercise to keep everything flexible. And don't worry if your symptoms sometimes get worse or a new one pops up. It doesn't necessarily mean you'll go on getting worse. Speaking for myself, I've had this thing for so long now that I try to take as little notice of it as I can!
AndreaB1967 lily65668
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pam_87693 AndreaB1967
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AndreaB1967 pam_87693
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lily65668 AndreaB1967
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Dentists aren't all that reliable either. My first-ever symptom of SS was my lips getting stuck to my gums because of the dryness. I didn't develop any sores or ulcers in my mouth (at that time - the ulcers came later when the dry mouth had cleared up!) but I developed huge cracks at each corner of my mouth that opened up and bled every time I opened my mouth more than half an inch or so. I had no recollection of ever hearing about SS in those days, in spite of having originally trained as a nurse so had no idea what was wrong with me. My GP said it was an allergy (which was clearly nonsense) so I saw my dentist. He just said he'd never seen anything like the cracks and didn't even remark on the dryness. I never again had those painful cracks at the corners of my mouth after the first six months, btw, though I sometimes get them at the outer corner of my right eye at times when it's very dry.
In any case, not all SS sufferers have a dry mouth all the time, and some of them never get it. Don't forget it's a syndrome - i.e. a collection of signs and symptoms - and not everyone gets the same subset.
I hope you're going to be all right during those long flights. Still, it sounds as if you have all the equipment you're going to need.
christine_73623 AndreaB1967
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For me it has gotten worse over time, I still have pins and neddles in my hands My SS has gotten worse over time especially my balance, where i stumble and could fall over i will have this several times a day, on a bad day on a good day maybe once or twice, The aches in my arms have gotten worse, i remember one time they were so bad i couldn"t even drive the car, literally hold my arms up to do it, but i have had SS diagnosed now for 22 years now when I was 31 But reckon i have I have had it 10 years before this I am 53 now , My nerves move all over my body, this started in my legs and just recently went to the rest of my body, people have even commented on this when they see my twiching of the nerves but it is not a wee twich it will twich down my whole entire arm, and i really can feel it, I also have cramps now all over my body, from the top of my head to my feet and this will happen constantly during the day, and that started probably the last 5 years constantly and especially in my stomach, I put a gel on my body, that helps with aches and pains and have done this for years, but do not take medication ,that is up to the person to decide what is right for them the first 2 years with SS was really bad for me, And then i had a long remission,
AndreaB1967 christine_73623
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lily65668 christine_73623
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I have to say though that in general, and give or take the odd blip, I still feel better at 72 than I did when my SS started at 50. I realise I'm one of the lucky ones, but I still suspect we're in the majority - only not on this particular forum. Every time I go into remission I feel better and more fired-up than the last remission. Yesterday afternoon, I even managed to turn my mattress top to bottom for the first time in a year - and I didn't suffer for it afterwards! In the bad days at the end of last year I couldn't even turn it side to side, and some days I couldn't tuck any of the bed clothes in.
sally83545 AndreaB1967
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It all gets worse as the disease progresses.I know what your referring to I had the same thing it is awful, the soles of my feet at night would burn. Plus the pins and needles around my stomach left me feeling
worn out. I was put on 400 mgs of Hydroxychloroquine and as the medicine kicked in, it all went away and is no longer a problem. Good luck and feel better,
Sally
aitarg35939 AndreaB1967
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I'm 61, was diagnosed by the dentist about 21 yrs ago, and may have had this all my life. I've been on gabapentin for other issues, chronic pain after an accident and RLS, and have been on Evoxac for about 12 yrs. The latter is for the dry eyes & mouth, I've found no way to function without it. I also use Tylenol and ibuprofen rotating around the clock, but that's in large part for arthritis in my neck due to a terrible injury as a toddler.
PINs & needles have recently departed - glory hallelujah! I will call it remission. I know that mine was small nerve neuropathy because I had the nerve conduction & EMG done. We only did that because of a spinal injury. I can't recommend it unless warranted as it's an agony to have all limbs done in one go. Well worth it for me, I got to continue on in avoiding the back surgery I've been avoiding since 1990.
My SS hasn't gotten drastically worse. Of course, I have chewed a mountain's worth of gum since 1978! So hang in there and take the best care you can of yourself. I, too, have had nerve damage heal. I've now got proof that some of my damaged spinal discs have healed. I can't explain either of these occurrences and would never suggest one hope for such, I mention them merely to say that we cannot predict accurately about our bodies. If at all possible, try not to live in fear and try not to worry.
I hope your trip goes well.