Face neuropathy?
 

I've been dealing with lower back pain and foot numbness/pain for 9 months. My back pain has improved but, my feet are getting worse. I've been diagnosed with peripheral neuropathy and my neurologist is running a bunch of lab work to determine what the cause is. Recently the PN spread from up legs and into the tip of my fingers. Today my lower face and jaw is tingly. Anyone else have neuropathy spread to their face? This is scary.

I'm sorry that you are dealing with this. Facial neuropathy is indeed scary. But you are in good company here. Many of us have facial neuropathy - numbness, tingling, burning etc. I even get extreme burning on the back of my head and neck.

What type of tests did your neurologist order?

You're definitely not alone. Next to my feet and legs, my face and scalp get it the most.

Please don't be surprised if all your testing reveals no obvious cause. It's the same with a lot of us here.

Yes, I have neuropathy in my face. i am sorry you are experiencing it also.
My face neuropathy came from having Lyme Disease.
It is the worst in cold weather. Having cold air from something like a car air conditioner hit my face is awful too. It is the worst on my right so I always have to sleep on my left side.

I control my neuropathy with Lyrica and Hydrocodone. B vitamins.
I also use lidocaine/prilocaine cream.
I avoid sugar and spicy foods.
I have done sensitivity work and that will work for awhile.
I have done hypnosis for pain control.
I do chi-gong, tai chi, meditation in groups or guided imagery via YouTube or dvd's.
From time to time I get cervical spine ESI's(Epidural Steroid Injection).

I truly hope your neuropathy does not progress any further.
take care, D.

Me too...
 

Yes I have neuropathy in my face. I haven't read about too many people with this. I have small fiber neuropathy that started in my feet, lower legs, and spread to my hands. One night I accidentally ran out of gabapentin and felt the neuropathy pain and tingling in my scalp and face. I have an agonizing "itch" there as well. I'll never, ever run out of gabapentin again! :eek:

Thanks for your comment. She ran about 20 blood tests. I don't understand about half of them. However, I do know I have a low positive ANA. No lupus or cancer markers and no diabetes. I had a higher copper and ferretin result. Normal B12. She wants to do a spinal tap next. That totally freaks me out.

I have it everywhere too. Yesterday my daughter did something funny and I was laughing. The laughing hurt my face and took all the funniness away.

I'd get that checked out. High ferritin can be a sign of iron overload disease (hemochromatosis).

http://www.mayoclinic.org/diseases-c...s/dxc-20167322
some doctors are unfamiliar with this.

I'd also get that B12 result... as labs still mark low values (below 400pg/ml) as "normal".

A few months (3 or so) after my SFN started in my feet and hands, and my back hurt a great deal at this time, the tingling started in my face. Thinking back though, I had some face tightness and eye lid and cheek twitching going back months before the SFN even 'started'. It can be scary, but you get used to it, I guess. Funny what you do get used too with a chronic illness.

I hope hope you have some improvement and feel better. Easier said than done, but if you make your peace with your condition and what's happening to you, it can (perhaps significantly) improve the symptoms. But it takes a while for that to happen, and getting new symptoms everywhere doesn't help.

Yes, my is intermittent. It is sometimes bee stings, sometimes sharp. It is painful to touch my face and to be touched.

So sorry for your suffering.

Thanks everyone for your comments and support. I don't know anyone with these issues so it's nice to know I'm not alone. I'm 45 years old with young children (ages 7 and 4). I pray that I'm able to go for walks and take them places again. I've been pretty much house bound for 9 months. Thank God for my supportive husband. Thanks again..

I have SFN in my face, lips and tongue.

I take Gabapentin for the discomfort. The SFN doesn't really DO anything but feel terrible.

Hugs, ElaineD

Braveheart I'm sorry your neuropathy is affecting your face. I've had small fibre neuropathy slowly progressing for five years now and my face is quite badly affected. My mouth is worst with the pins and needles and tightness in my gums and it goes up into my nose and into my left eye. I don't get huge pain with it or shocks but just this twitching and feeling like I have a Hoover nozzle stuck to my mouth and nose? So horrible. I can't tolerate Gaberpentin or Cymbalta or Amitipyline so I make do with paracetamol and the odd sleeping pill. Lately I've been trying antihistamine and it does seem to help me sleep a little but my small fibre neuropathy has changed from pain to numbness and icy cold.

I don't know what is causing mine but it's very widespread and I've had a lumbar puncture and all other tests so my neurologist has ruled out MS and Guillaine Barre and my rheumatologist has ruled out my RA or Lupus because I have no autoantibodies or immunoglobulins showing up. He therefore thinks the problem lies elsewhere but can't say where I should turn next. I'm thinking of endocrinology and have been referred back to neurology. I see an oral surgeon tomorrow. The last one told me he only ever sees this in patients with MS.

Good luck getting to the bottom of your problems more successfully than I have.

Hi Mat,

You list that you have Hashimoto's....has your doctor ever considered Thyroid disease as a possible cause of your SFN?

Cliffman :)

A good question! I don't suppose they have because I've asked many times. Initially they thought it was my RA drugs and also tested my serum B12. I assumed it was part of my connective tissue diseases because I have high inflammation in my blood (ESR and CRP). But less than two weeks ago my rheumatologist said that it can't be because my joints have no inflammation and all my autoabtibodies are now negative. Personally I think he's wrong but proving this would be impossible. My rheumatologist did suggest that the neuropathy and dizziness might have an endocrine cause but my GP dismissed this as implausible and has referred me back to neurology. Difficult to know what to do next. I'm stuck I admit!

It's interesting Mat that you mention a high "CRP" number in your blood because my Neuropathy started several days after having heart stents. The pain started in my left thumb, then spread to my right hand. I was referred to my GP, he took blood and the only thing he found was a high "CRP" blood result so he sent me to a Rheumatologist and nothing showed. I wasted several valuable weeks before going to a Neurologist. I wonder if there's some kind of link with Neuropathy and high CRP readings in one's blood?

Several month's later I was given a diagnosis of SFN and since then it has spread throughout most of my body.

Also, I was recently told I have Hashimoto's and the Neuro doc said it could be a possible cause but she does not seem sure. Are they treating yours with meds? They have not given me anything.

I hope you find out more and get some needed relief soon.

All the best,

Cliffman :)

Well I have had mine for five years Cliffman and been under rheumatology for all that time. I live in Scotland and the NHS is inflexible about people meeting criteria for referrals if not obviously falling under a specialism. So, on the basis that they believe my bloods are adequately normal for a hypothyroid person taking Levothyroxine - they won't refer me to a thyroid specialist.

RA is a rheumatic disease so I've been treated aggressively for this and monitored for inflammation. Once the joint inflammation went away they just shrugged off the face that inflammation or infection was still showing in my blood. But remember that small fibre neuropathy isn't a disease in itself but is often part of a disease process.

They don't seem to think that neuropathy would cause inflammation unless it's immune mediated - which I'm quite certain mine is. So if it's not caused by my RA or any other connective tissue disease such as lupus - then to my mind it must be linked with thyroid disease or something endocrine. Neurological conditions don't usually cause an inflammatory process unless they are part of a connective tissue disease. With your heart problems, high CRP, hypothyroidism have you or your doctors considered Lupus or Scleroderna or Vasculitis I wonder? Worth asking about if not abc getting your autoabtibodies taken. All these autoimmune diseases can cause heart problems.