I just wondered if anyone else has this symptom, I've had lupus for 14 years but I'm having quite a bad flare just now and this is a symptom I've never had before, it's mostly my feet and hands but travels up my arms and legs & I get it occasionally in my face too. It's a strange tingly sensation that feels like the skin is burning but almost vibrating if that makes sense. I'm taking duloxetine which eases it but nights are the worst and it seems to creep back. Thank you.
Tingling/burning skin: I just wondered if anyone... - LUPUS UK
I have uctd and het these burning patches.. Usually on my thighs. It feels like aomeone is holding a candle very close to my skin! I get timgling in my hands but i put that down to very tight shoulder muscles..
I get tingling , burning sensation too. Mostly my legs and it's to do with inflammation of the nerves!. As your in a flare are you taking steroids?. I find they've been the best treatment . Hope you improve soonX
Hi Ruby, I had a similar pain In my foot a few years before I was diagnosed with lupus. It took a while for someone to believe me but in the end the physio diagnosed it as complex regional pain syndrome (CRPS) . I was prescribed lidocaine patches which over a period time did help. It was affected by the cold and I couldn't even tolerate a sheet touching it , had to sleep with my foot out of the bed! Hope this helps and you get some relief soon. xx
Thanks so much everyone for the replies, if it doesn't ease I'll go back and mention it. misty no I'm not on steroids at the minute, I did have a steroid injection at my last appt and I'm due back for a review shortly though. It did seem to ease a bit but has come back over the last few days again so I was just wondering if it was maybe something different altogether and possibly not the lupus. x
I don't have Lupus but I have had this burning itching sensation in my hands and legs below the knee and I have been bruising more but I have also noticed I have sores in my nose not sure if this is a connection.
I get the tingling weird sensation in my feet, and I got it once this summer on my shoulders when I wasn't covered up at the beach. Stinging, almost hurting. Weird. Last time I went to the beach. I was only there late afternoon and thought I would be fine. Not sure if I should go back unless I am covered up good.
Have had burning in my legs and feet in the night, the rheumatologist told me it was to do with too much oxygen in my blood down to Lupus.....tingling I get mostly in my left hand but I dont think its linked with the burning. I've been waiting for an app with the nerve dep for months to find out whats causing the tingling and numbness...
TOO much oxygen in the blood - that's a new one, never heard of it before. Where is that additional amount of oxygen coming from, has he told you? Is he saying that your lungs are over-efficient here? One never knows with these doctors - do they fob us off with obscure causes just so we don't ask any more questions or are they telling us something real.
In relation to tingling, have you tried upping your Vit D? I had similar symptoms and my neuro increased vit D to 4000 units per day and symptoms disappeared. Who knows, maybe it can work for you too. I buy them off Amazon.
My heart was racing - pulse going like the clappers, I assume it was linked to that. He didnt go into detail just reassured me it was nothing to worry about. Could be asthma linked I was diagnosed with that about 3 years ago after being convinced I was having panic attacks every night...A bad attack took me to my gps and he knew straight away what it was...
I have problems with a fast pulse sometimes. Called paramedics out one night and it read at 220+ don't ask me why as I don't know...woke with my heart beating through my chest..scary and uncomfortable but it settled down before the paras left.
Re vit D I had blood tests done last year that came back with a low reading on that vitamin. I had to go to hospital once a month over 4 months for capsules after which I was prescribed Adcal. I'll be on it for the rest of my life as my system doesn't produce the vitamin any more. Its helped enormously with the muscular aches and shortness of breath I was having but not done a lot for the tingling fingers...think thats a nerve things..carpel tunnels been suggested by a friend but I wont know for sure until I get an app....
Adcal doesn't have enough d3 to make a difference, you could do with a higher dose, I think - but your docs know you better. Scary, the high pulse!
Hi Chris, I read your post an it so much like I suffer every night.
Legs on fire, use to get cramps bad but that stopped, my legs feel so hot an my breathing is rapid I was told was having Nocturnal Anxiety attacks. I found if I take a pain pills it ceases some. But who wants to take a pill at 4am when your going to need it later in the day. MY PC prescribed Trazadone as a anxiety pill, tried Hydroxyzine too that didn't work I had a side effect from it. No one will give me an Anxiety pill due to the pain medication I'm on.
The tingling in your fingers could be neuropathy an not carple tunnel, just a thought, I have peripheral neuropathy in both my hands, feet an legs.
My RA Dr. was on the fence about Diagnosing me with Lupus, although i have so many of the symptoms. Wish he would so I could be treated an possibly help with those issues.
I do take Vitamin D daily along with Calcium. I have osteoporosis seems none of the regular treatments are helping me much. I've been on the weekly shots an had to stop them due to side effect, before that was on prolia shots every 6 months for couple years. I'm still ate up with Osteoporosis though.
Hi SassyZee....I've been a lot better since the asthma sprays. I still wake very occasionally with a tight chest but I'm much more in control of things now and have learned to relax, I keep a spray by my bed...have a tv in my bedroom and a tablet, the sort to play games on not the pills, they help to distract from the panic and help me fall asleep again. If all else fails I take amitriptyline, but not often, I dont want to rely on drugs if I can help it
Had the surgery for carpel tunnel on one wrist beginning of august and although there is still a bit of numbness in thumb and 3 fingers, the worst of it that was so painful in the night, has gone. My right wrist needs doing when I pluck up courage to get another referral....she wanted to book me in straight after surgery in august but I said I'd wait a while. I have nerve damage from osteoarthritis in both feet and other areas....sciatica took its toll as well...The podiatrist told me its unlikely its anything to do with Lupus...was diagnosed with that must be 11 years ago now but its only been mild
Anxiety in the night is the worst, I do sympathise and hope you find some relief xxx
I have also been suffering with an odd itchy burning sensation in my back for the very first time over the last few weeks. I am on steroids, Fultium-D capsules due to very low vitamin D (Adcal wasn't doing enough), hydroxychloroquine and methotrexate. I don't know why but it is another annoying symptom.
I have a diagnosis of RA rather than Lupus but lots of overlaps. I've been suffering with this burning and tingling for over a year now in my peripheries much as you describe - pins and needles with attitude! I also get heart palpatations and a rapid pulse often - wore a monitor for a week and was told I have ectopic beats - a type of arhythmia.
In the daytime the sensation in my legs is more wet and slightly numb - at night it is painful like I'm wearing pain socks and gloves - move my hands at feet continually as they burn.
I'm also waiting impatiently for a neuro appointment. My rheumy said he thought it was probably small fiber neuropathy but wouldn't commit to what might be the cause. I asked him if it could be inflammation and he just replied "yes possibly".
My GP believes I have Sjogren's and Raynauds secondary to my RA - and these might be causing the tingling and burning sensation. I saw a connective tissue professor who backed this up. But somehow I'm not sure because my fingers don't change colour much and my toes just go white when I get in the bath but this doesn't square with Raynaud's I feel?
Anyhow I find Amitriptyline 30mg helps me sleep usually but it dries my eyes and skin out so I'm trying to drop doses - hence awake in night with burning peripheries again! it is very unpleasant and I often feel it must be in my head. I take supplements AdCal and extra capsules and Vit D levels have risen from bottom of insufficient to low normal now. I also take B12 tablets sublingually and Magnesium B but the gps only prescribe and know about the AdCal. I'm not in any immune suppressant drugs presently because of side effects - GP is hoping the neuro might suggest what next but I won't get an apt for 4-6 months - a long wait!
Hi Ruby, I have that same sensations in both my legs for over a yr now an none of my Dr.'s can figure out what is causing it. I was on a Cholesterol medication that was causing muscle cramps in my legs. I stopped it an they went away My PC didn't like it but my neurologist advised me to stop the medication an I did.
Does the hot legs wake you up? an does your head get hot too an hair wet from sweating? Mine does the only way my legs don't wake me up anymore is I'm sleeping in my recliner every night. When I sleep in my bed an the legs touch is when I wake up from the heat. I found that if my legs don't touch each other they don't get so hot an wake me up, an with sleeping in the recliner they don't touch. It sucks that this is the only way I can sleep without the attacks coming on.
Does your legs swell up? Mine does an recently found some support stockings that come up to my knees. My legs are huge do to the water retention. I do take them off some cause they as well make my legs hot.
Hi there - I too get the burning/tingling feeling which is really painful, mine is mostly in my legs and I cannot seem to keep them still when it happens. Luckily it does not happen all the time but intermittently. I do not really drink but I have 1 glass of red wine on Sundays with Sunday lunch but I have stopped this now thinking that could be causing it. I have UCTD & RA and at my last appointment with my consultant she told me it was inflamation of the nerve endings that was causing this and told me that taking a walk might help - and she was right it helped a lot. She also said to take Co-Codamol pain killers which again help. I mentioned the drink of wine I used to have and she said that 1 glass of wine a week would not hurt me - at last some good news! I am on steroids at the moment and I do think that they help as well. I wish you the best in trying to get to the bottom of this and get some relief.
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