Does anyone get really bad tingling lips and legs give way at times with fibro x

[Bird88]

I keep getting really tingling lips at times and on ther occasions my legs go like jelly and give way its really bugging me

[Marz]

I see on your Profile you list under-active thyroid. Do you have Hashimotos - auto-immune thyroid ? Low thyroid can often mean low vitamins and minerals. Tingling can be linked to low B12. Is your thyroid well treated ? - weakness can be linked to poor levels - especially low T3 .

thyroiduk.org

[Bird88 in reply to Marz]

Im due to have thyroid levels tested again so that will be good to check thanks for replying

[Marz in reply to Bird88]

Do they test more than the TSH ? How much T4 are you taking ? Do you have Hashimotos ?

[Echoblue]

Hi Bird88, yes, mine do that too!

I have been known to have to ensure I have spun both legs out of the car before I dare put any weight on for fear of a leg giving way. (it is a really odd but definite sensation that is tricky to explain to anyone who doesn’t have it and I sometimes feel it stronger than at other times) and yes, I also have tingling lips.

I don’t know if these are fibro symptoms or something else as they are currently investigating what else is going on. If you come up with any answers please post and I will certainly do the same.

Good luck and take care x

[Bird88 in reply to Echoblue]

Aww thanks sounds like me for sure im still having more tests for other bits and bobs too . Was just worries due to never having the tingling in my lips before x

[Fibromummy2]

Hi yes my legs give way all the time i have lost count of the number of times I have fallen because of it and it is so scary. I also lose the power in my arms and can't seem to hold things for long which isn't great when you have a 1 1/2 year old who wants lifted. Hope you get it sorted but from my experience nothing gets done I just have to keep notifying my doctor when I fall which is useless.

[Bird88 in reply to Fibromummy2]

I no that feeling i have four children to which one is autistic dd is 11 and when she has meltdowns can be quite violent and its a struggle as i just dont have the strength no more take care x

[Shazzzy in reply to Bird88]

That sounds exhausting Bird, all the best

[Jamie1965]

Hi I don’t get tingles in my lips unless I’m getting cold sores but my legs do collapse under me all the time I’m like a rag doll hitting the floor blood tests come back clear and doctors said it is linked to my fibromyalgia but hospital told him it has to be investigated but only when I dropped when trying to leave the specialist office 😂 whoops so still now the wiser and it has been going on for some 4 years

[Bird88 in reply to Jamie1965]

Oh no sounds like my doctor i have been put in a year investigation with no tests etc until year later to see what difference there is really dosent help in between hope u get somewhere soon take care x

[bantam12]

Tingling lips is a symptom of low Calcium.

[Wolf3 in reply to bantam12]

I take calcium daily, low dose and do try top up with arms when the sun shines.

[bantam12 in reply to Wolf3]

Are your calcium levels low ? Calcium shouldn't be taken unless tested and found to be deficient.

[Wolf3 in reply to bantam12]

Yes, I was low so gp gave me a 6 week course but told me to take calcium daily, always asks me if still taking when I see her.

[bantam12 in reply to Wolf3]

I hope you are getting regular tests and for parathyroid as well because the two have to be kept within a tight range and must work together, elevated calcium is to avoided.

[Wolf3 in reply to bantam12]

I haven't had a test for a while, I will mention this to Gp next time, thanks for advice.

[Bird88 in reply to bantam12]

My calcium levels are great 🙄 didnt no that interesting to no tho thank u x

[Wolf3]

Yes, I pretty much have constant tingles in legs, feet arms and hands and also feel it in my lips and my balance feels off and wobbly. X

[Bird88 in reply to Wolf3]

Horrible isnt it and its not just like a normal pins and needles its very painful take care x

[spb1]

For me, my GP is clueless, hence I never go. So I find it very reassuring to read that others have the same symptoms as me. Wishing everyone well.

[Patdoyle]

Yes I get tingling in my lips and I also get weak belly legs.can be quite scary.

[13thAngel2019]

Yes Bird, I have had the tingling feeling in my lips for years. It doesn't happen as often as it used to do though? I remember trying to explain to one of the GP's in my old doctors before I moved house in a different area, I felt so stupid after the look they gave me? My lips used to gradually start with the tingling that went stronger until I found my lips slowly closing into an "0" and froze like this for between 5+15 mins each time it happened? (still tingling!) Although my lips closed to a very tight "0" (& I looked pretty weird,) it wasn't painful but felt scary as I didn't know why or what was happening? As I only got diagnosed with Fibromyalgia approx 4 years ago I never thought it could be this? Now I'm told by my present GP's that "could have been" part of my fibromyalgia!! Also in answer to legs turning to jelly, yes I have that too and it sometimes feels like a 'heavy' feeling comes from my lower back through my hips down to just above my knees, where from here to my ankles quickly turns to jelly? Very strange feeling that can be quite scary if there's no where to sit down quickly?!! ( & yes, this has also been put down to a part of Fibro?) I hope you find some answers from your doctors, if they say it's something else than what I've been told, please let me know? Regards Angie x

[Hidden]

Hi

I've had the jelly legs, I had to get my friend to come for me the other week as felt like I was going to collapse. Horrible. Take care. Love and hugs Lynne xxxx

[Bird88 in reply to Hidden]

Aww thank you i no what u mea its horrible like u lose control of yourself take care xxxxxx

[Hidden in reply to Bird88]

Thank you, you too. Love and hugs Lynne xxxx

[Mxlucy]

Don't have tingling in lips but do have it almost constantly in arms/hands and legs.

[klr31]

Check your B12 levels and thyroid blood tests and check the results yourself.

Karen

[Bird88 in reply to klr31]

How can i do this like a self home kit sprt of thing x

[klr31 in reply to Bird88]

Ask your doctor to check them. Otherwise there are private home testing companies that could do it.

Karen

[Elizahl]

Omg I just asked about lips to and yes my legs go like that to you are not alone it's driving me made