pins and needles during flare

[chelybel]

hi
Im new to this site - had rheumatoid for 2 yrs now but convinced its lupus as got most of the symptoms associated with lupus such as nasal sores red dotty palms of hands etc etc. Anyway im curious to if any of you have pins and needles during a flare ??? This is a new thing to me - get my flares usually with about 2 hour warning the pain starts in shoulders wrists hands knees or hips then thats it im totally unable to move them for about 2-3 days. But had 3 flares over last 2 weeks and been a very stressful couple of weeks with family matters - but this flare in wrist and hand im getting severe pins and needles in the hand which never had before. Anyone else had this??
thank you.

[Samsmom]

Hi!

Yes, I usually get that sensation during a flare. It is usually my left toe, but sometimes it is my hands too. It can be scary, but I think it's relatively harmless. I believe it is a neurological symptom. Lucky us! Good luck with it!

[lupie98]

Hi! Welcome! Yes I have felt this. Heat and physical therapy helps me.

[Lily]

Hi chelybel :)

Not fun, I get peripheral neuropathy and it affects my legs and arms.

Have you got a lot of swelling in your wrists? I'd let the doc know about it next time you see him. Unless it gets really bad then I'd get checked out sooner.

Hope it clears up for you soon :foryou:

love
Lily

[perwel36]

Hi,
I have been complaining of "pins and needles" type of pain on my feet. It has feels really hot. My dr. has no explaination for me and I find it frustrating.:mad:

[red24]

Hi,

Welcome to this wonderful web site. It is very nice to meet you.

I have RA and SLE Lupus and I have neuroapthy in both legs down to my feet and in the arms. When I have a flare with the RA my feet drive me crazy with pins and needles and they feel like they are on fire. I also get that in the hands too and that is the worst. I have been in a flare now for the last 2 weeks due to the weather I'm sure. There is not only pain, tingleing, numbness, you name it but it is really exhausting. I have slept a lot in shifts due to the pain. I can not lay in one position for to long. I live 20 miles out of Seattle Washington and all it has done here for 3 weeks straight is rain.

What makes you think you may have Lupus? I'm sure you know that RA is also a auto immune disease just like Lupus is. It can get very confusing which is which. Please go to your doc and have test run to see if infact you do have Lupus.

Will be thinking of you and hope to read another post from you soon.

Your new friend,
Deanna

[bellaeyes_1]

Hello
I get that "pins and needles and fire... What i do and i am not sure if that helps for real or not but i put my feet up real high like in a recliner with extra pillow get a towel hot or cold depending on how my skin feel and then wrap them in it while my feet are up for a a while and when they are cooled down or the heat has helped put baby powder on them just dump it on... it is an old family thing,,,, IDK but it helps me

[Douglas]

Howdy,
"Pins and needles", aka "fuzzies", or for those from the US mid-west feeling as though your extremities have been immersed in a vat of Vernor's Ginger Ale, are considered part of the package with SLE according to my MD. When i asked pathetically what to do about it he basically said "It is unlikely to kill you so live with it." Unfortunately it can get so bad that I fall down. The worst I have experienced was the whole left leg and the right foot. That loud thimping sound you just heard was my hitting the floor. <grin> I find a walking stick necessary at times like that.
Welcome aboard.
Douglas+

[gymcoach10]

I have a few items that I do right at the beginning of a flare- one of the things is just like you describe, the pins and needles are in my back, arms hands. It is like the hairs on my arms hurt (I know that is ridiculous sounding, but is the only way I know to describe it) the comparison of Douglas also fits well. (Good one) I have a lot of symptoms that seem to come from my Central and peripheral nervous systems. My symptoms have become less frequent with proper medicines.

[Lily]

Hi,

Anyone with this symptom should also be tested for a Vitamin B12 deficiency, its a common cause of this and can carry serious long term consequences.

Likewise with Lupus if it is at the serious end like losing feeling and having complete numbness, falling down etc....... if that happens frequently enough then it can cause great disability by the irreversible damage it is doing to the nerves. So your doc saying it wont kill you Douglas is probably partly right, but left untreated it can doom you to living in a wheelchair for the rest of your life.

Usually a step up in treatment will help correct it or at least make the episodes less severe and frequent. One it gets to the numb stage and affects your ability to stand it means your peripheral nerves are actually being caused permanent damage. If that goes on long enough and frequent enough then the inevitable happens.

love
Lily

[SJZ]

I was going to say the same thing. Get your B-12 checked. Mine was checked recently and it was low (284). A low B-12 can cause the pins and needles sensations. I've read that symptoms can occur with anything below 400.

An alternative to testing is to just get a good sublingual B-12 and try it. Too much B-12 won't hurt you.

[Lily]

Hi,

I agree that most sources say you cant overdose on Vitamin B12, however if the B12 comes in a multi B formula then you need to watch your intake of B6 in the multi B. Overdose of B6 can cause peripheral neuropathy if the recommended dosage is exceeded. Most docs say that 100mg is ok daily of B6, although the recommended upper limit is 200mg.

love
Lily

[Maia]

How do you get a dx of peripheral neuropathy? Do you need the EMG or do your doctors just take your word for it that you have pins & needles sensations? Should a person be on steriods or something if this happens frequently to prevent permanent nerve damage?

I've complained of this starting this last summer, never experienced it before and it comes and goes, but nothing is being done for it at all. Tests haven;t even been ordered to check into it further.

[Lily]

Hi Maia,

How do you get a dx of peripheral neuropathy?

I think it depends vastly on the doctor. Usually a Neurology consult/examination is needed unless your other doc is very familiar with it. Even then it can be hard to diagnose, especially if the only symptom is pins and needles. Peripheral neuropathy is more than pins and needles alone and that could also have another cause.

No-one has actually muttered the words to me except my GP, but then its he who reads between the lines when he gets the letters from my lupie doc and neuro. Both said I had weakness in both legs evident upon examination, and because of my other symptoms and lack of bloods showing a direct muscular cause/no vitamin deficiencies, no diabetes, GP thinks its PN related to either my SLE or Sjogrens. The other two docs noted the pins/needles/burning sensations/loss of feeling at times and pain symptoms but didnt give it a 'label').

At the moment the GP is treating the pain with a Neurontin type drug and I will wait and see what the lupie doc does (if anything) when I go back to him in January. He will have the report from the Neurologist by then.

I dont think they will increase my lupus meds (immunsuppresion) unless this remains constant, right now it is still coming and going so probably not causing permanent damage. I did have to have a pred shot when the pain was at a peak and I was obviously flaring with other lupie symptoms present. But that crisis has passed and it's a on off sort of thing now. So its a wait and see and thats my particular story, others may have a different version.

It's definitely a Neuro field though and requires their input and them picking up subtle variations in your arms/legs in order to diagnose it......just my 2 cents worth. I think my lupie doc was pretty sure but he wasnt willing to confirm anything until he gets the neurology report and they ruled out anything to do with my vasculitis causing weird sensations or another possible TIA. The vasculitis is ok right now so PN will probably be their conclusion the GP said.

Peripheral Neuropathy:
http://www.nlm.nih.gov/medlineplus/ency/article/000593.htm

Paresthesia (pins and needles, loss of sensation)
http://www.nlm.nih.gov/medlineplus/ency/article/003206.htm

love
Lily