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Hi
Can anyone give me some advice on how to cope with this awful feeling i get in my toes. Its sort of like pins and needles but painful almost like a cramp. It can come on anytime whether i am walking sitting or lying down. I dont know, any help?
thanx
 

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Hello angie,

I'm not really sure what it could be but you certainly need to mention it at your next rheumy appointment (and neuro if you see one).

The tingling and pins and needles sounds like neuropathy but I'm not sure about the element of it coming on suddenly even when walking.

I sometimes get sudden nerve pain or sudden electric like feelings in my feet with neuropathy (it tends to affect me more at night than if walking) but I'm maybe not the best example as I seem to confuse everyone with my symptoms...

I hope someone else will have some ideas for you :)

Katharine
 

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Pamela b
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Hi Angie
I have sort of pins and needles in my toes and feet and they feel numb.
My Doc says it is my metabolism fighting an infection but dont know if she is right or not as not much faith in them but I do have white cells in my urien which 3 lots of anti bio have not shifted
She may be right but couldnt say but for me it is more annoying and frustrating than that painful.


Dont know if that helps
Pam
 

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Hi,

I would follow Katharine advice. Also ask for blood work for potassium. If you are low on that it can cause what you described. Try eating a banana a day and see if it helps. I get what you described but it happens at nite. And yes it is very painfull. Best of luck.

Elaine
 

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Just a thought... it couldn't be Raynauds in your toes could it? That can change sensation and I definitely get that...
Claire XX
 

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Pamela b
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Hi
Ia m told it is all due to Raynards phenomenae which I am told I have,
At the moment life is y hard as I feel so dizzy all the time as well
I can do virtually nothing at all without having a long rest.
I am not sleeping either although not worried about anything
I eat 3 bananas a day and loads of fruit as the strawberries are ready int eh garden but have no taste sensation either and a strange sense of smell. can nto stand the smell of milk and keep thinking I smell things that arent there. the Sjorens I am told. Nothing tastes and I have totally lost my appetite so despit being on steroids (40mg ) have lost almost a stone in a month.
The doc says it " Will get signifcantly better than this "
I hope so
I cant spell either despite a degree ! I used to spell and write so well !
Pam
 

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Hi Pam

Just a thought are you drinking plenty of fluids as I find I have dizzy spells.

What does your Rheumy think the cause of the weight loss is. I know I lost loads of weight even on pred and the food I was eating my body couldnt get the goodness from it.

take care

dixy
 

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Pamela b
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Hi
He hasnt said why the weight loss.
I drink all thet ime because my mouth is so dry with the Sjorns problem
I had 2 fainting spells early in the year before dx and I asked is SLE was the cause and he said yes and I was so stunned by the DX did not ask for further info, silly me.

At the moment I am not able to do anything much and find it annoying and frustrating and am at the end of my tether,
I am not oone for doing nothing as I ahev always led a very busy life
maybe the meds will kick in soon

Thanks for your support
Pam
 
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