Does anybody get pins and needles and twitching legs. Ive been getting pin and needles which quite bad of a night, My sjogrens consultant and told me to up my plaquenil to 400mg a day instead of 200gm all my bloods are within the normal range apart from slightly raised ESR but normal for me im worried sick it may be MS
I get these and everywhere. I was checked for MS 4 years ago and they found paired bands which shows only that a systemic process was occurring rather than MS. Now this makes sense as Sjögren’s related. I have to say that I actually think it would be much easier if it was MS because others would understand more and there would be support and therapies I could benefit from. Now I’m seeing my Gp about Trigeminal Neuralgia and ocipital Neuralgia and 101 other things that they say are part of a very complex autoimmune disease. They admit they don’t really understand how I’m so badly affected because it’s only in my small nerve fibres not CNS.
My ESR and CRP are always high but they say this is just Sjögren’s making me very viscose nothing to worry about. But I’m afraid I still do!
My legs have been swollen for way over a year so my doctor put me on water pills and potassium and Gabaentin. It sounds like you have restless leg syndrome. I would talk to your dr about him putting u on that to help your legs from hurting at night.
Hi Christine,
Obviously I can't say your tingling and twitching isn't down to MS. However, I would echo aitarg's warnings about not automatically assuming the worst after perusing the internet for a couple of hours.
Both symptoms are commonly suffered by people with Sjogren's. Pins and needles along with frequent attacks of numbness in the extremities were what I'd identify as my second SS symptom, starting more than 20 years ago. (The first was dry mouth.) The problem comes and goes, along with my other SS symptoms, though I'd say it's tending to get worse over time, especially in the past year or so.
As a former neuro nurse, I don't have the slightest concerns that my own symptoms are down to MS. Given that I've now had them for over 20 years, I'd be totally disabled by now (at the very least) if they were!
In recent years I've started to get occasional attacks of myoclonus. By this I mean little involuntary muscle jerks, mainly in my arms but sometimes in my legs. I'm not referring to the hypnic jerks we all get just as we're falling asleep, btw. These are completely normal. I'm talking about sudden muscle jerks during the day. I don't know whether these are down to Sjogren's or not, but I can't say they're getting any worse so I just ignore them. I've noticed that they seem to happen more often when I'm tired or stressed.
Some people refer to the phenomenon of fasciculation as "muscle jerks" but this is slightly different. It's a more prolonged episode of contraction of tiny muscle fibres, usually just under the skin. It can go on for up to a minute or two at a time, and can often be seen with the naked eye. I think I've always had fasciculation - I can remember being intrigued by it as a child - and I sometimes go through periods when it happens more often. Recently, during a period of extreme dryness of one eye, I suffered a lot of blepharospasm, though it seems to be easing off now. This is a form of fasciculation that affects the upper eyelids, and is extremely noticeable. The affected eye will sometimes close completely for a minute or so - which can be a bit embarrassing if you're in public!
It's true of course that all the above are among the early symptoms of MS. However, you can't turn it on its head and assume that because you have the symptoms you must have MS. Things just don't work that way. MS is only one of the conditions that can produce these symptoms, and is among the least common causes. Given that you clearly have SS, and all these are among the symptoms of SS, don't you think this might be the most likely reason?
All my blood work normal too. I have twitching all morning When I am tired I have it all day. I am so glad you posted this I now have pins and needles on left side of face and numbness all the time which is new since I saw Dr on Monday. She insisted I do not have Sjogren's because bloodwork normal. Except on the ESR 2 pts higher but nothing to worry about She says. TY Christine63572 I don't take any meds except Lyrica and prednisone. I can stand these symptoms and no one listening to me Now a bone marrow I need because they go by bloodwork
Thanks everyone I also have lupus and im February was diagnosed with PBC as well so when the pins and needles started I just thought please not another autoimmune problem the tingling isn't anything to do with my liver as that isn't too badly affected (yet) I will assume it is sjogrens for now and stop worrying.
I honestly would not worry because you already have diagnosed conditions already that are known caused of parasthesia/ small fibre neuropathy.
Thanks Tumtum you are right, im having an anxious time of it at the moment I had a liver biopsy just before Christmas and that started the anxiety off again so expect these symptoms are caused through the stress ive been under I do know that stress is one of the worst things for setting off flares.
Me too re very anxious time - in fact I’m in orbit all the time now with tremors, spasms and twitching, numbness, Trigeminal Neuralgia, adult asthma, kidney problems, probable Menieres etc - to the extent that I actually forgot to go to a really important medical appointment yesterday to discuss this!
But I do tell myself now that if it turns out I have Parkinson’s or MS then at least these are known quantities and I will deal with them. What is so hard is the not knowing what is wrong. Maybe we both need to blame the conditions we know we do have keep calm and carry on. X
Today the left side of my face lip and inside my mouth is numb. My eye seems involved too. I am so upset Dr's don't give me a diagnosis. I feel bad for all of you on this website. I am very glad you post your symptoms this way it is teaching me TY all
Hi Christine,
I am sorry you have these issues! Yes, I have the pins and needles feelings in both of my lower legs and feet. My Neuro doc tested me, and he called mine peripheral neuropathy, and is due to my SS. As a lot of us on here, I don't just have the dry eye and mouth either, I have so many other issues with internal organs, lupus, RA and the list just seems to keep going on. I unfortunately can not take the plaquenil, as it caused damage to my eyes in the first 3 months, which is too bad, as it just started to help some. Anyway, they put me on methotrexate, didn't do much, upped the dose, so had to go to injections, made me very sick, took it foe a good year, had to stop. They put me on Imuran a year ago, along with my prednisone, and injections of kenalog shots when needed, and feel better. But those pins and needles still make me crazy, still have to walk with my cane, can't always feel where my feet are. This SS is not for the faint of heart that's for sure!! I wish you luck dear!! Please keep us posted, we are all here for you!! There are lots of well informed people as well as nurses and medical staff on here!!
Hi deidra ive had lupus and SS for over 12 years and been relatively stable but not symptom free. I was on steroids low maintenance dose until August last year and regret ever coming off of them. Last year l was diagnosed with diverticulitis (not autoimmune) and in February diagnosed with pbc and fortunately responding to treatment. So ive had a lot of stress up until diagnosis in February. I cant take anything else on board. I dont have numbness just pins and needles in legs and feet and muscle twitching l do get the odd tingle in my face but thats not a concern. I just wish my bloods had shown inflammation then l would have known its a flare. My consultant read out my blood results yesterday and there was loads full bloods lfts B.12 thyroid diabetes folic and more all were well within range. I will see how l go with the extra dose of plaq and see if l can ride it through before l decide what to do. As l have autoimmune probs anyway l dont expect l need a name. My cholesyerol is 4.2 and my bp is good also im 5.2 and weigh 8stone l dont drink or smoke l dont eat red meat or junk food but l have disease life stinks sometimes x
That should read liver disease. Im 68 this year
Re your bloods being normal now - non painful neuropathy can be a sign that your tiny nerve fibres sustained damage during times when inflammation was high so it’s a residual effect perhaps? Also, I’ve been taken off Mycophenolate (highest dose) after 14 months. I notice that the severe pins and needles affecting both my arms has died right down since I stopped.
Its all beyond me im only taking 200mg plaq and since yesterday 400mg im due to go to spain for a month in April and just said to my partner im going to live with it unless my legs give way or l collapse im not going to miss another holiday im going to assume its my lupus or sjogrens playing up and hope it settles down when l was first diagnosed l used to have a lot of twitching and was prescribed valium or similar it did wotk
Hi Christine I am on 400 of plaq a day since June last year and I still get tingling (feels like buzzing) in both my feet, lower legs and they feel heavy, hot and feel numb, it is not painful (maybe uncomfortable) and doesn't last for more a minute or 2. This only happens when I am on a reclining chair or in bed (so no weight is present on my feet). I haven't mentioned this to the rheumatologist coz its not painful and only lasts a short period of time.
I have noticed recently I also get an involuntary tremor in my right hand which stops when I focus on it. this happens when I am tense so I have put it down to age and inability to cope with tense situations any more. (its like people shaking their leg when in tense situation without being aware of it? and have not mentioned this either to rheumatologist) and I don't want to up the plaq or get prescribed nerve meds( my last rheum was giving me drugs like smarties .At 1 visit he gave me Lyrica coz I told described debilitating neck and shoulder pain which he thought was nothing to do with SS but was trapped nerve. At the next visit he prescribed Cymbalta coz he said it was fibro (after prodding my sides and elbows with his fingers and it was painful) I only took Lyrica for 10 days...didn't help my pain and Cymbalts I did not even start coz I couldn't get the 30mg starter dose before I could progress to the 60mg. However I have to take Celebrex 2x a day to get some relief and am so far avoiding also taking solpadeine (codeine based 
)
Hi Shaq why did he put you on 400 plaq was that an initial dose or was it increased? My pins and needles don't seem as bad now but muscles are still twitching which doesn't hurt but its just another thing to worry about. My legs don't feel numb. I just cant understand why now after sjogrens and lupus for 12ish years why it should happen now as I mentioned above just hoping its not another autoimmune thing to worry about. Even if it is ms there isn't anything else they can give me to help
Hi , I was put on 400 and prednisolone when I as 1st diagnosed with SS (summer 2015) my symptoms were: a very dry mouth and very swollen painful joints. The meds worked within 2 weeks . after 3 months I had follow up endoscopy ( GERD and Barretts oeshphagous) and I was taken off all meds (Barrets had improved) so I also stopped plaq and weaned myself off predis. (within 2 weeks). My SS behaved in Dec 2017 which I ignored June ...by then I was in debilitated and hubby had to help cutting food , doing/ undoing buttons, pulling clothes up, washing hair etc . So back on 400 plaq and painkillers which took 2 to 3 months to work for swelling to go and life to resume.
can you get tested for other autoimmune which may cause your current tingling ? What does your rheum say?
sorry, I meant to say My SS misbehaved in Dec 2016 which I ignored until June 2017 and then went back on pla 400.
I could go through lots more tests but im going to leave well alone for now to be honest there is no cure for these autoimmune and if any flare they give you steroids. I will see how the extra 200 plaq goes and just take one day at a time.