Hello all! I was just wondering if anyone gets facial numbness and electric like shock pains?
Lately my eyelid and cheek have been going numb (a couple times blurry vision) and I get electric like shocks again on my face, legs, arms ,trunk and now my toes.
I had nasal surgery a few weeks ago due to Sjogren's but this has been going on since before that.
Just curious to find out if others have it too though I hope not!
Hi.... yes I do, my doctor told me he thought that it was due to the fact I was on hormone replacement therapy because I had a Hysterectomy due to endometriosis. One day it felt like the left side of my face dropped, I ran to a mirror thinking the worse but no change... I also have bouts of numbness in my hands & feet. If I'm holding anything when it happens, it drops.. if my foot goes numb, I fall...
Man alive, Brent, I can't believe your doctor said that about HRT following hysterectomy due to endo! I'm a double-dipper, too, SS & endo, total hysterectomy @ 27. At about 49 I began experiencing an intermittent are of slight numbness at the edge of my mouth. If my neurologist had been so foolish as to point the arrow as your docs did, I would've thought about popping him in HIS mouth!
Mine, TJ,.is clearly just occasional small-nerve peripheral neuropathy and after several years of frequent visits, it's hardly come around in the last 9 or so years.
Hi tj I had that. You may remember I have Behcet's rather than Sjogren's but yes. Had that for years and like you it woukd occur in different places...truly awful.
Hi tj,
I do get this on the left side of my neck often. I also have peripheral neuropathy in both of my lower legs and feet. I also get the shooting pains in my hands, which run down my fingers, as well as my toes. It is more of a shocking pain, to the point that it feels like I can't move them when it happens. It comes and goes, but the neck thing lasts for days, even weeks. Drives me crazy, not a pleasant thing to have!! My vision does get blurry, but I think mine is due to being dry at times, and have to use my moisture drops. Have you mentioned this to your Rheumitologist? You might even mention it to your Neurologist, as it is their department as well. This darn SS sure does keep us on our toes!!! If it's not one thing, it's another, and always something new showing up! I wish you luck!!
Hello TJ,
I've had a numb area on the top of one foot for months now and will mention it at my next visit to my rheumatologist. It's a little worrying, but I'm grateful it's not on the sole of my foot as that might compromise driving and possibly walking. I hope your symptom goes quickly. Take care
In the early days of my SS I had the electric shocks and buzzing frequently.
A funny thing happened one day regarding this. I was in my local supermarket and was ambling down the aisles when suddenly this electric shock and vibration started going through my whole foot. My immediate thought was that there was a short in the electric wiring under the concrete floor. So I moved my foot but the electric shock continued. Like in slow motion, it slowly dawned on me that this was not the floor but this was one of my self generated electric shocks.
Similarly during those early years (2007-2010) I had numb patches over my face, trunk, thighs, buttocks and arms. The facial numbness was often around my lips, eyes and cheeks. The first neurologist I saw was so disdainful of my numerous symptoms that after my tests back then came back negative she wrote in her report that perhaps these symptoms were indicative of a psychosomatic condition.
It may be comforting to know that although these symptoms continued for about three years neither of these two things happen at all often now.
Hi TJ,
Good to hear from you. How are you doing?
I go through periods of having this in my hands and feet (and occasionally a whole leg below the knee) but haven't so far had it in my face. I've always understood it to be peripheral neuropathy due to SS. It was one of my earliest symptoms of the condition, starting in one big toe, so I've had it for about 20 years now. I don't have it all the time, it comes and goes. I'm currently going through a period where I have it in my left hand for quite long stretches of time.
How are the nosebleeds now? I see you've had surgery. I thought of you the other week, when I had another one (though nothing like yours). I'd been pretty much out of action for two months with severe vertigo. It was the benign positional kind, where the crystals in your inner ear get in the wrong place and send wrong information about the world around you - especially the position of the ground under your feet. This meant I couldn't get into the office during all that time for our twice-monthly group meetings and monthly training sessions because the conference room we use is in the basement, reached by a steep spiral staircase. (Anyone who's ever had it will know vertigo and spiral staircases don't go together!) We mainly work from home via telephone and internet, but I was getting some pretty stiff questions about all my meeting no-shows after two months.
Anywho, I finally got myself fixed - a 20-minute session with a specialised physiotherapist who kind of played pinball with my runaway crystals and managed to get them back where they were supposed to be by moving my head around. The following week, I jumped out of bed bright and early, ready to go to the meeting, when yes, you've guessed it! The minute I stood up, the floodgates opened. I started believing I was cursed and would never get to a meeting or training session again. Fortunately, I'd got up with plenty of time to spare, so did my ad hoc nasal packing thing and left it in for an hour, by which time it had stopped.
What was your surgery? Did they finally track down that blood vessel that they said they couldn't find when you had your emergency admission? I really hope they did. You've gone through some terrifying experiences.
Hi brenwag68, I also had a total hysterectomy in my very early 20's (49 now uhg lol) due to cysts but I have to agree with aitarg that I don't see how it is related at all. I am not on HRT. I am so sorry to hear about your numbness. Same junk happens to me where I drop things, stumble, run into a wall, etc. I think the worst was when my hand went numb for a whole day and freaked me out but it hasn't been anywhere near that bad in months. Does this happen to you on a daily basis? If so, I would be really concerned because I do not see how that is normal in anyway, shape or form. My thoughts and best wishes are with you! Please keep me updated.
Hi margaret !!!! How have you been? It's been a while. How is your Bechet's? I am sad to know you het this too and yes it is truly awful and annoying. I know when the weather begins to warm up my electric like shocks happen a lot more frequently and also when I work in the kitchen. It seems this happens to many people and I have had it for years but it keeps intensifying but I don't think I have to worry too much because it sounds common. I am moving soon and will be changing Dr's so it ought to be interesting to see what I learn from them. AT this point I am just ticked off at my body if you know what I mean. Can't wait to hear back from you Best wishes-J
Hi deidra, I agree 100%. That's why I haven't been on too much lately. I talked to aitarg a bit and was saying how I just felt I was whiny lately because it seems everything has been affecting me. Seriuosly, if it isn't one thing like you said....its 500 other things lol.
I am so sorry to hear how your neck pain lasts for weeks. That has got to be horrible! My shocking pains are more like I am being zapped by open wires or such and last a second or two and then gone. But they happen over and over. It hurts and is annoying as hell but it is more the numbness that freaks me out. I "fired" my rheumy lol and love my nuero but he is so far away and will be switching all my drs soon. Who knows what's next. Wishing you the best!
Hi there mariaw, yup, I gets bouts on the top of my foot to one toe on ccassion and it lasts for months at a time then disappears. My dr said nerve damage. Nothing to do about it. I tried gabapaeptine and it made me sick as did Lyrica i think??? I won't take lyrica because I heard too many awful things so it's a waiting game on what to do next. Have you tried any of those?
Hello megheart, I have small fiber neuropathy and especially in the warmer weather my shocks come on full fledged. The numbess has been only in the last couple years but has been spreading along with horrid joint and muscle pain. I am curious to what you mean about self generated electric shocks though. Could you please elaborate?
Hey lily! So nice to talk to you again if even under the usual crap*Y circumstances. Aw geeze, that vertigo sounds pretty horrendous!!!!! I get it rarely when watching tv with fat movement or water but nothing, and I mean nothing like you get and I can't imagine how awful that must be. Seriously I don't know how you deal with it. I am so sorry this happens to you!!! I have never heard about the crystals before and I seem to learn so much whenever I come on here. How often are you getting your nosebleeds?? I find it interesting and sad, that a lot of people get the electrical junk also. I didn't know SS affected nerves before. More info on this would be greatly appreciated.
Anyway, mine was called a posterior nosebleed which required emergency surgery as you know. They ended up finding 4 holes, 2 on each side. Docs were pretty much shocked at first I guess because posteriors are rare, then they couldn't believe I never had a nosebleed before or weren't on blood thinners. I'm like, I was making homemade shake and bake lol, sat down to rest, and next thing I know gusher city lol .
They concluded it was due to extreme dryness and Sjogren's and they were able to fix 3 holes but the 4th will be something I am not looking forward to. If it happens again, they have to break my nose to reach it. I guess I have the smallest nose my ENT has seen and I terribly deviated septum. WHo knew???? The only thing we can guess is I was hit by a drunk driver my 1st day of kindergarten and thrown 50 ft onto cement (pretty much almost died) and that's when they think it happened because I have never had an injury to my nose or face. It's just one of the many crazy things I think we ALL go through. I have been not recovering too well. After surgery I had to back to the ER via my Dr because headaches so bad I couldn't walk or sit up. Horrid pain beyond believe. It was complications from surgery and I still am having pains where it feels like a knife is being shoved up my face into my eyes and head. I am doing better lately though still having issues.
Been better the last few days excet for shocks and freaky deaky numbness so I have been trying to work on my house and as usual my Hidradenitis Suppurativa (another autoimmune) has reared it's ugly head and now I have several abscesses. ALSO, I feel like a big baby for whinning about this when you and everyone here also has sooooooo much going on!
I just love you all here and my heart hurts for all you're going through and the challenges everyone faces everyday and I am thankful this site is here where we can all connect to share our experierences, dx's, and vent. Thank you all for being so kind!!!! Please keep in touch lily and everyone
Hi... I know I keep getting absolutely retarded doctors!!! I see a neurologist, rheumatologist, optometrist, gastroenterologist, obgyn, cardiologist as well as a primary. They now want me to see a urologist because I have trouble going to the bathroom (both ends) but when I urinate sometimes it will not come out, yet it feels like I really have to go & then sometimes it comes on so quickly that I have to get there asap or I will wet myself. When I go it pains sometimes really bad... I too am 49, just turned this month... I had my first hysterectomy in my early 30's (my doctor would not remove ovaries & cervix due to my age, stupid I know) so I suffered for years but then I found the right doctor (for once) & they removed the rest... I also pass out, no warning just out cold... the neurologist found nothing wrong with the brain, so he feels it's not brain related, I do have a whole in my heart so I started Meds for that to slow the heartbeat (my cardiologist I think may be my smartest doctor) he is the one that thinks all my problems are due to my autoimmune problems, but my rheumatologist basically said that my cardiologist needs to stick with his profession (which I though, TOTALLY RUDE) ... I go numb at least 4-5 days a week in one place or another, if I am not with my husband I use a cane, which absolutely kills me do to the fact of my age, but I am afraid to break something should I fall (I broke one of my T bones in my back) I told my rheumatologist that I am afraid that if I do not get the right treatment I will die (I REALLY feel this way) but he says "you're not going to die, I've never heard of any Sjogren's patient dying" like it was a joke... I am getting weaker & weaker. My organs do not function properly... after being on here & seeing everyone's issues & that we are all so similar, I know this is no joke, it's real & we all are very sick people who need help... my thoughts are with you all.... 😌
Hi... I too have neuropathy in my feet, legs, hands & arms... it causes so much problems. I use a cane most of the time when not with my husband... the doctor put me on Meds for it but they did not work so I stopped them... my eyes too go blurry most of the time because of the dryness I developed cataracts about 4 years ago... take care
i too was on gabapentin but one day I ran out & decided to try going with out it (because I was in horrible pain with it) when I stopped I did not notice any changes so I no longer take it... my left foot usually remains numb now (I just hope it does not go in my right for I may no longer be able to drive
What I meant was the electric current/shock in my foot on that day was coming from my own nerves rather than from a loose electric wire under the floor (external source).
Thanks for the kind wishes. Just to clarify, the BPPV (benign paroxysmal positional vertigo) is now totally fixed, so I don't have any more problems. It could come back of course. It's actually the second time I've had it in about 20 years, but in the other ear last time. According to some sites, it can be caused by SS. (But then what can't?!)
Now I know how to handle it, I'm not scared of it coming back. Last time round I went to an ENT doctor, who did a whole load of unpleasant (and, it turns out, completely unnecessary) tests, then attempted the same manoeuvre as the physiotherapist, but screwed up and left me much worse. I threw up in his consulting room! An ENT was my first port of call this time too - it would seem logical, wouldn't it? During a 5-minute consultation, this one took a brief history, failed to do the classic one-minute positional test that is all that's necessary to diagnose BPPV, looked in my ears and found the unaffected one partially blocked by a plug of wax. He sent me down the hall to his nurse, who did a successful irrigation, then on to the audiologist. After that he saw me again for a full two minutes, told me my hearing was OK for someone my age (which at least is good to know) then when I asked again about the vertigo - which is what I was consulting him for - said: "The consultation is over". And that was that. It was only when I went to my GP that he referred me to the vestibular physiotherapist, who fixed me in one consultation and at minimal cost. I obviously should have thought of that in the first place. I'm leaping around like a spring lamb now!
Sorry to hear you're still in so much pain. I've never had nasal surgery but I broke my nose in a fall about 30 years ago. It wasn't a complicated break and only needed splinting for a few weeks, but I couldn't believe how painful it was for months afterwards. I didn't get the "knives in my face" thing, but I remember it hurt at every single step I took for about three months, and still ached badly when I was tired more than six months later. I do hope your pain eventually subsides too.
I didn't know you had hidradenitis suppurativa too. That must be awful. I didn't realise that could be autoimmune as well, and had to look it up. It sounds as if you're having to put up with a lot more than me. Please try and look after yourself.xxx
Gotcha.. i was confused lol. So glad the shocks are calming down for you!