Burning skin

[sixty]

Hi fellow sjogren addicts.  I am wondering if anyone else experiences a burning sensation on their skin in various places.  Right now it's on my hand, but it's been on my feet more than anything.  I sort of feels like a sunburn, not terribly painful but not something I want to feel. Just another delightful ailment to add to the list.

[Dawnmist]

Talk with your Rheumatologist & PCP about this asap.

What you're describing can be due to Small Fiber Neuropathy (nerve damage, being caused by Sjogren's itself). If that is so, you'll need stronger immune suppression to reduce/stabilize the nerve damage. Options I've often seen used are IVIG, Imuran, Cellcept, Rituxan. Without treatment, the nerve damage will progress and that burning will spread up the legs and up the arms, become stronger/nastier/more painful, and will be there all the time.

For Small Fiber Neuropathy, the normal EMG and Nerve Conduction tests will NOT find it - those only test the longer nerve fibers. If you're somewhere that has access to it (e.g. in the US), the gold-standard test for Small Fiber Neuropathy is the Skin Punch Biopsy. If you don't have access to that, there are various cold/vibration sensation tests that can be done to diagnose it.

[Carolina]

Yes, sixty, DawnMist is right.  This sounds like Small Fiber Neuropathy. 

I have this condition, and suspected that the medication standard for treating SFN, Gabapentin, was causing some difficult side effects. So I have been slowly tapering off Gabapentin.  And now I have the 'sunburn feeling' on my face, hands and arms.

The worst of the feelings of SFN for me are a pins and needles in my finger tips, and other unpleasant feelings.  So far those haven't come back, but I still have two more weeks of the taper.

If you can manage SFN progression by increasing your immunosuppressant, that would be good.  SFN is the result of damage done by your immune system to the small nerve fibers in your skin.

Hugs,  Elaine

[sixty]

Thank you for your replys and I'm sorry for taking so long to respond.  I'm a little lost with your explanations, so are you saying I should increase my methotrexate and reduce my gabapentin?  I do take both along with an opiate for pain.  Those are the total of all things I take for Sjogrens.  SFN is a new topic for me and I will talk to my rheumy when I see him in a week.

[Anastasia]

Hi Sixty,
I also have SFN.  In fact, that was one of my first symptoms, along with fatigue and achiness.  I'm not bothered by dryness so much but was diagnosed with Sjogren's Syndrome quickly because I had positive SSA and ANA.

I have been twice to Johns Hopkins because they seem to focus on neuropathy.  I had the EMG test and the punch biopsy done.  Both were negative! I was surprised, not by the EMG (nerve conduction) result, since that doesn't typically detect small fiber neuropathy, but by the punch biopsy.  However, the Hopkins doctor said that clinically, my symptoms were consistent with small fiber neuropathy.

Here's his message:
" Lyrica and related medications represent the first line therapy for such conditions. In progressive and refractory cases Intravenous gammaglobulin (IVIG) has sometimes been helpful.  So, if Lyrica does not help to improve your symptoms, I would recommend to pursue IVIG next."

My local rheumatologist has just started me on Rituxan, which I'm supportive of in spite of the risks because I believe it's important to suppress the immune system as well as treat symptoms.  The Hopkins doctor felt that Rituximab is typically helpful with other manifestations of Sjogren's such as salivary gland swelling, dryness and fatigue, but did not anticipate it would be helpful with neuropathy.

Lyrica DOES help my symptoms although I'm not thrilled to be on it.  It actually makes my mouth slightly dry!  Also, it can make me feel woozy and light headed.  I'm on a relatively low dose - 150 mg per day (Sometimes I only take 100 mg)  I'm willing to give everything they recommend a fair shot, so long as I don't have any serious reaction.

I hope my experience may be helpful to you!  Take care!
Anastasia.

[Dawnmist]

Hi Sixty,

Small fibre neuropathy is the most troubling symptom I have from Sjogren's. The burning extends from my toes up to (and occasionally IN) my groin, and from my fingertips to my elbows, with a few "splashes" on my left upper arm. It has changed from simply "feeling like I was standing in a bath tub of hot water" 18 months ago,  to becoming severe enough in my hands that without significant pain medication I had trouble holding a spoon 10 months ago. We got the pain mostly under control last Christmas...but since Easter it has been increasing in the heels and soles of my feet. Over the last 2 months I have been struggling to walk to the nearby train station after work so I could get home, and for the last 2 weeks I've been on crutches. If my heels touch the ground when I walk they very quickly start to ache with the same pain as a broken bone. This is all despite being on the maximum dose of Lyrica, near max of Tramadol, standard dose of Cymbalta (I cannot increase the Cymbalta without stopping the Tramadol, and we've already tested that and found I am in far more pain with higher Cymbalta doses than I am when taking them together), AND Lidocaine (anaesthetic) patches under the balls and heels of both feet (and both hands) daily! Add Celebrex and Plaquinel for the inflammation side of Sjogren's too. I see my Pain specialist tomorrow, and I'm hoping he has some alternatives we can try so we can get the foot pain back under control so I can get off the darn crutches!

That's why I am so concerned about getting the progression under control. My specialists have (in my opinion) piss-farted around simply trying to manage it via pain control and have done nothing yet to actually slow the immune attack against the nerves. As a result, I have already lost part of the use of my hands, and I'm currently losing the use of my feet. Not due to any problem with the muscles or their control, simply due to the pain of using them in certain ways becoming more than I can bear. I think they didn't expect it to progress that quickly, and were not used to thinking about Sjogren's as something that needs aggressive treatment.

My Rheumatologist has finally referred me on to a couple of Rheumatologists with one of the main hospitals here (the new Rheumies also work in the Lupus clinic at that hospital) to try to get me access to Rituximab to try to stabilise the nerve damage. Rituximab isn't approved for use in Sjogren's in Australia (nor is IVIG), so he cannot administer it - but he's hoping that going through the Lupus clinic I'll be able to get it. I still haven't heard from the new Rheumies yet, and as such I don't know how long it will be before I can make an appointment with them. He expected that I'd be able to see them within 2-3 months (from almost 4 weeks ago). In the mean time, I've been doing everything I could to try to reduce the severity of the pain - changing footwear, inserts, padding, walking distances, cushions in bed to lift the heels off the mattress, changed foot positions when sitting, etc, and I simply ran out of options to keep me off crutches. I also cannot use normal crutches because they put your weight through your hands - and my hands won't tolerate that. I ended up getting a set of "SmartCrutch" crutches because the arm section could be rotated up to horizontal so that you put your weight through your elbow instead. Plus, they come in a range of colours and don't look "institutional" - all the other Gutter-style (which is what they call crutches with the horizontal arm section) crutches I found were very ugly. 

Given the rate of change, if I just keep going on using my current medications I'll likely be in a wheelchair by the end of the year (and not a manual one - again, my hands wouldn't tolerate pushing the wheels).  I'm hoping we can prevent that - I turn 40 in December so I've still got a lot of living to go, and ending up in a wheelchair wasn't how I had planned to celebrate my 40th birthday!

[Carolina]

Dear Dawnmist and others:

I also have SFN.  The treatment of choice is Gabapentin, taken in increasing amounts until the pain is bearable or gone (preferably).

To see if my episodes of myoclonus are caused by Gabapentin (which I now doubt) I am slowly tapering off and my sunburn is back!  Lips tongue and face are the worst, so far.  I have profound Peripheral neuropathy in my legs and feet, different issue entirely for me.

Dawn please read "How to Be Sick" by Toni Bernhard.  Begin with Chapter 3 if her personal story at the start bores you.
Her words of wisdom and meditation are wonderful.

Regards,  Elaine

[irish]

I have intermittent burning issues over many years. They come and go for no known reason. The tops of my feet will burn and get slightly pink and the sides of my feet burn and actually hurt when touched by the sheets. I put all kinds of lotions on them just to see if it helps. Sometimes I think the hydrocortisone 1% that is over the counter seems to help some but doesn't take it away. It lasts as long as it wants to and leaves and then comes back when it wants to.

The ends of my toes will pain and burn also. My doctor did blood work for low Vit B12 and folic acid which came back normal. However, I have been having an itchy and burning scalp the past several months also with some other issues that could be from low Vit B12. Soooo, Doc put me on Vet B12 tabs 1000 mcg every day and will see what happens. She said that the burning in my toes could be from the deficiency also. I also have anemia and have been struggling with this for a couple of years off and on.

My colon and stomach issues are really weird and don't show much on scoping so she is wondering about this being from a deficiency also. Time will tell. The less invasive or severe health issues should be ruled out first before going to the heavier duty problems. The low Vit B12 can cause pernicious anemia.
Good luck and hope this can be resolved for you. Irish