Crawling sensation all over : Anyone else have... - LUPUS UK

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Crawling sensation all over

Buckley123 profile image
29 Replies

Anyone else have crawling sensation / buzzing all over worse at night laying still legs and face mainly effected

Constant headaches neck pain weakness as per ! Not going away !

I know I’m always moaning

Dr now refusing meds until covid19 is over ! I’m off steroids to now just 200mg of hydro xx

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Buckley123 profile image
Buckley123
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29 Replies
DJK99 profile image
DJK99

Hey Buckley - yes - I have had a buzzing feeling all over for years... way before diagnosis. I have it now as writing in bed. I thought it was because neighbours had their washing machines on spin - wherever I lived! I know it sounds nutty, and it is... but I would have staked my paltry savings on that being the case... but it never has been. I don't understand it... so am having to ignore it. Haven't mentioned it to my rheumy... well, actually I did mention my shaking internally feeling which often came with raised temperature but as I only see him every 3, 4 or 5mths and we talk for approx 15mins, there are usually a ton ofother things to discuss and I forget. But the buzzing is different.... The crawling feeling in legs is separate... now that is excruciating.. it got worse when I was on tamoxifen lastyear.. and the severe cramps were unbelievable... both have now stopped due to coming off Tamoxifen as was making my neutrophils dive even lower AND... I went back on magnesium/calcium/zinc combo from Solgar. Eureka the cramps stopped! This will help I bet.... Lack of magnesium can bring on cramp and all sorts... v unpleasant. Also are you drinking enough water throughout the day - 1.5litres at the very least...and not cups of caffeine, they are don't count eh:). Most of us on here can't go near it anyway I think... dreadful stuff (although I used to love it!). In the absence of any meds I'd give the magnesium combo a try...1 in the morning and 2 an hour before bed... but, as I'm not a doctor you'd probably best check in with your clinicians... Hey, what do they say about your symptoms??? Be great to hear! Personally I couldn't live without the mag/calc/zinc combo. Are you a big fresh foodie?? Maybe up your fruit and dark green/orange/red veg too... and nuts and seeds, oats, wholemeal bread (if you can) and all that.. if you are into that kind of thing. Hope that's OK to suggest. Mind you, look at the state of me!! Without a highly nutritious diet and high quality I'd vitamins I completely go to pot... get very ill.. so, essential for me! Hope that helps...... and you feel a bit better soon. D ps.. Holland &Barrett sell it too... and often cheaper or have deals. Good luck!

Buckley123 profile image
Buckley123 in reply to DJK99

Thanks for your reply it’s awful isn’t it ! Yes I do feel better drinking water !

It’s hard to know what helps and what doesn’t!

I’ve tried magnesium spray helped a little

I do take a lot of vitamins however I’ve been lazy lately ! And it has a knock on effect eating rubbish can’t go to the gym stuck in the house ! Just fed up really !! Three kids that want to get out ! I’m sick of my neuros

Headaches ect I know see I’m moaning again !

How are you xxx

DJK99 profile image
DJK99 in reply to Buckley123

Ahaaa.. well, I would definitely get some mag/calc/zinc...that combination is the best... Holland & Barrett often have it on offer. I can't stress enough how er, destressing it is... and gets rid of the leg stuff...along with lots of water throughout the day. And, yes, eating food that isn't good for you will make you feel bad.. we are what we eat etc ;). Glad you feel better drinking more water... keep it up! You deserve it... (and it calms down irritation.. in adults and kids = they did a lot of research on kids at school and it made a big difference to their concentration levels and behaviour...). I know it's a pain/difficult to eat healthily(although I love it!) but I know how important it is for us peeps to feel as good as we can.. I still get the symptoms we are all discussing obviously... but it's much worse if I don't keep myself hydrated and nutritionally sound... and rested!! And now I know you have little un's running around I'm guessing that's not always easy. Goodness, you have a lot going on... tricky times. Have you and the kids seen that amazing guy do exercises in the morning? Eye candy and keeps you all fit and healthy (water during and after!!)... Hang on......... here we are: getthegloss.com/news/we-did... - aimed at kids but works for adults. Even if only the kids can do it, it gives them something to do and burns some of that energy! youtube.com/user/thebodycoa... Let me know if you or the kids do any - it's all the rage apparently! Hope you feel a little better soon -and don't mind me banging on! Keep safe/well Dx

Bebe76 profile image
Bebe76

I get a buzzing feeling internally and externally when flaring badly. I don't know the cause but thought it might be the lupus affecting my nerves and/or muscles. I did lose a lot of strength during that time. After coming out of the flare and being on the right meds it eventually stopped. Now I get the buzzing only in my back or neck muscles when they are very tight.

Buckley123 profile image
Buckley123 in reply to Bebe76

Yes I have lost muscle strength too shaking tremors ! My neck is very tight too ! And back !

I think it’s inflammation because it helps take anti inflammatory

Xxx

Bebe76 profile image
Bebe76 in reply to Buckley123

Yes, you're probably right. Maybe inflammatio of the muscles, causing damage/weakness? I used the same word, "buzzing" to describe this to my doctor and I don't think she had any idea what I meant! 🤣 Based on the responses you got here, this is not uncommon! I also used to get the shaking as well, in my neck and shoulders, from my muscles being so tight and/or weak. Since getting my flare under control, and starting physio and strengthening exercises, I very slowly improved and these symptoms mostly subsided.

Buckley123 profile image
Buckley123 in reply to Bebe76

That’s a relief 😅 my neck is so weak ! But I don’t have any meds except hydro 200mg I had steroids for 6weeks to calm optics neuritis but nothing now can I ask what meds you take you don’t have to answer just wondering xxx

Bebe76 profile image
Bebe76 in reply to Buckley123

I was initially given azathioprine, which was starting to work for me, but it caused my liver enzymes to increase so I had to stop. I was then put on mycophenolate mofetil, which worked well for me with no side effects. Everyone reacts differently to these meds, though. I am also on a very low does of steriods, and hydroxychloroquine. It was really the physio and exercises that helped the most, but it took a long time to get back to (nearly) "normal" in terms of my strength. I started off very slowly, just walking for 15 minutes, then walking faster, then for longer, and eventually adding in strengthening exercises. If you are able (after this pandemic passes) you may want to get advice and/or treatment from a physiotherapist.

Buckley123 profile image
Buckley123 in reply to Bebe76

Thanks so much for your advice!

I don’t seem to have a lot of luck with doctors ! No one can agree !

This azathrioprine I was to start but because of the virus my consultant wants to hold off !

I went from 60mg a week to tapper down 10mg a week to nothing had awful symptoms after ! Sickness room spinning but that’s gone now just feel ill all the time and so sick of moaning ! Xxx

Bebe76 profile image
Bebe76 in reply to Buckley123

I hope you can get some relief soon. Hang in there!

Buckley123 profile image
Buckley123 in reply to Bebe76

Thanks so much really appreciate your advice x

How are you? X

Bebe76 profile image
Bebe76 in reply to Buckley123

I'm doing OK at the moment, but slightly worried about about this pandemic. Hoping it will pass soon and we can all get back to our lives!

Buckley123 profile image
Buckley123 in reply to Bebe76

I know it is worrying isn’t it ! Did you read about the hydrodroxchloroquine xx

Bebe76 profile image
Bebe76 in reply to Buckley123

Yes, I have been reading the updates here from Paul Howard, and heard about it in the news. I never thought I'd see the world taking such an interest HCQ!

Buckley123 profile image
Buckley123 in reply to Bebe76

Seems promising though ! And a positive if you are already on it maybe ! Xx

MissusTee profile image
MissusTee

I get it after a shower, so I can only have baths now. My understanding is that it's a side effect of hydroxychloroquine.

Buckley123 profile image
Buckley123 in reply to MissusTee

Yes I can get this after baths too if it’s too hot 🥵 xxx

Buckley123 profile image
Buckley123

Thanks guys yes I do seem to be loosing strength in general is I put pressure on my. Muscles like pull myself up ect they tremor xxx

MEGS53 profile image
MEGS53 in reply to Buckley123

Hi Jade. Sorry to hear you're having problems - you DON'T moan!!

I also get a feeling that I'm shaking internally, which is different - I think - to the muscle tremors I can see in my hands, legs, fingers etc. The 'visible' shaking is sometimes really bad and involves my whole body, but more often it's 'just' a tremor. My proximal muscles (those ones nearest the body) are also weakened, but not particularly my neck.

Also, like you, I have restless leg syndrome, which seems to be much worse in the evening and often really bad when trying to go to sleep. Aaaarh, I hate it! Those who don't have it seem to think RLS is just annoying (!) it is, as we know, much worse than that.

Hope this makes sense!

I don't know what causes these things - answers on a postcard please...

Jade, take care in these scary times and isolate as much as possible (mmmm, tricky with 3 kids....) xxx

Buckley123 profile image
Buckley123 in reply to MEGS53

Thanks mate I feel Like all I do is moan these days!

I get the same and it’s my proximal muscle that seem to be worse !

Not always and isn’t affecting me lift it my children but my arms will shake when I do !

Yes rls is awful not got it tonight for some reason ? Not sure why !

My headaches are back with a vengeance I think it’s when my neck is bad they are worse !

Anyway how are you ??

Day 30 here in isolation with three children as I took them out of school Early slowly going mad 😂❤️❤️

MEGS53 profile image
MEGS53 in reply to Buckley123

Ah, you never moan!

I've just ordered a bottle of magnesium and aloe spray from Amazon, as recommended by our friend on LupusUK (?greengirl?, soz I've forgotten her name already!!). Hopefully, this will help with RLS symptoms - I'll let you know.

I'm doing ok, but not going out's a bit of a trial (I'm in the 'shielding' group). Mind you, I would have broken out of quarantine by now if my daughter was here as a youngster (she's lovely now, tho). Take care and stay safe. xxx

Jmiller623 profile image
Jmiller623 in reply to Buckley123

Wow. Yes I do get this. Especially the weak muscles and then they tremor. Most prominent in my arms when I’m pulling something. Sometimes my legs if I rise really fast. Same with the buzzing. I call it the tingles. I get this when I’m having a whole bunch of symptoms/flares. No clue what causes it. Nothing really helps. It just comes and goes.

Buckley123 profile image
Buckley123 in reply to Jmiller623

Yes exactly the same! I can’t get a lupus diagnosis with my blood work !

But my neurologist was certain it was lupus due to my brain scan !

But bloods say no so I’m struggling but my new neuro is saying uctd and I know that a diagnosis but lupus is the only place where people understand how I feel it’s crazy! How are you xxx

Jmiller623 profile image
Jmiller623 in reply to Buckley123

I’m okay. Have neuro optho appt in mid-April. Don’t know if I’ll go.

I understand the need for a diagnosis. UCTD is treated pretty much the same as lupus. Hydroxychloroquine to the rescue. This did help for me. Maybe it’ll relieve you to know that with CNS involvement, you wouldn’t be a candidate for a lot of newer lupus drugs which sucks.

My labs do show muscle inflammation. My CPK is always elevated. My rheumatologist wants me to get an EMG which tests muscle innervation. And the shakes and all symptoms are worse around that time of month for me. Only thing that has remotely helped was going back on atenolol (beta blocker) for heart rate. But this makes me tired. Always trading off one bad situation for another. It’s getting old.

The fact that your neuro person even is considering UCTD is a win IMO. CTD isn’t even on their differential over here. You say neuro lupus. They say there’s no such thing. 🙄

Buckley123 profile image
Buckley123 in reply to Jmiller623

Really! I’m not sure if he’s right my blood only shows elevated ace which is normally seen in sarcoidosis but he’s a leading sarcoidosis specialist

And tells me it’s not ! It’s uctd

My other neurologist says it’s sarcoidosis but he’s the one who told me it was lupus

I see dr Cruz who said it was uctd then changed his mind .

But my neurologist is sticking to his guns with uctd ! Who knows what’s really wrong !

I guess they are nearly all treated the same ish 🤷‍♀️

Xxx

Jmiller623 profile image
Jmiller623 in reply to Buckley123

Oh yeah. I remember this whole discussion some time ago. I also erred on the side of it being sarcoidosis because of your ACE level being so high.

Man Buckley. I’m sorry. This is the worse conundrum to be in. I don’t know what I’d do. I’d probably stick with the neurologist I had the best relationship with. I feel like docs that take personal interest are more likely to look at all aspects and angles of your case.

Buckley123 profile image
Buckley123

Yes it’s been going on some time now nearly two years !

I’m not sure any of them are any good tbh I get one answer paying privet and a different one on the nhs

My neuro the sarcoidosis specialist who thinks it’s uctd has probably been the fairest so far ! But he’s at log ahead with my old neuro who now says I have sarcoidosis after telling me last year lupus 😂😂😂😂 it’s enough to drive you mad is it not ! Xxx

Jmiller623 profile image
Jmiller623 in reply to Buckley123

Doctors are the worst. Aren’t they!? 😂

Buckley123 profile image
Buckley123 in reply to Jmiller623

They are my friend it’s only the forum that Keeps me sane xx

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