[Ali3]

Hi all, does anyone have these really unusual sensations on their face and inside the mouth....which includes the tongue. Everything in that area starts to tingle and it un-nerves me as im not sure why its happening ! plus its a little scary as i dont feel particularly well when it happens.
Have had lupus diagnosis since January 07.
Also i constantly have a facial rash, which includes red flaky skin and individual spots !! Very attractive !
Get really fed up with this at times and would like to know how others manage ?
Thanks
Ali x

 

[lazylegs]

Hi Ali,

I also get tingling and numbness on my face and inside my mouth. It is a strange sensation. Usually I am in a flare at the time. Once the flare subsides the tingling does also.

Tingling and numbness is definitely something to mention to your doctor.

Take care,
Lazylegs

 

[Ali3]

Hi Lazylegs,
Do you have the tingling continually or on and off when you are having a flare ? What other symptoms do you have when in a flare ?
Ive been gradually coming off Prednisolone which ive taken continually for the past two years....wanting to see what the lupus does without medication, although im still on Plaquenil. The doctor didnt want me coming off both at the same time.
Not sure what is going on at the mo with these symptoms !!
Im very underweight as well which has been a real struggle to manage with the lupus so im wondering if this all adds to everything.
Always seem to have tender groin area, lumpy lymph nodes !!! My skin is always enflamed and for the first time this winter ive had coldsores and raynaulds really bad !! I sound a right mess !! On saying all this, i still get on with life and have a smile !! its not all bad !!
Ali x

 

[x_claire_x]

hello

HI Ali,
I have a strange sensation top of my tongue alot of the time and am also trying to reduce my prednisolone, but truth be told, I have had that sensation for most of the time... something I have yet to confess to. It does come and go, but since my flare last Nov has hung around.
Also Raynauds has been very bad this year, but so has the cold, so I have put it down to that, but also been prescribed nifedipine.. a vasodilator to take on days it is very bad, I am a bit reluctant to add to the tablet collection though!! I have bought rechargeable insoles etc to try and tackle it. Next investment will be battery operated gloves that work this time I hope!

Lots of hugs,Claire

 

[lazylegs]

Hi Ali,

The numbness in my face and upper body comes and goes with flares. Below the breasts the numbness is constant due to neurological issues.

Symptoms can vary with each flare. I can pretty much count on a vivid mylar rash, mouth and nasal sores, fever, increased fatigue, night sweats, muscle weakness and migraines.

Raynaud's has been a constant companion this winter with this cold weather. I have been taking extra care to keep my hands and feet warm. Still need something for my poor nose.

I don't know how fast your doctor is lowering your prednisone. Maybe it is being done too quickly. You might want to contact your doctor since you are having this new symptom.

Take care,
Lazylegs

 

[chal23]

Hi Ali,

I get this sensation (along with loads of pain!!!) when Im in a flare. Ive had espisodes of this up to 6 weeks long. hope you get some relief soon!

Chal