Tomorrow's lip biopsy and thoughts about flare ups of SFN
 

One night last week I had the worst flare up of my SFN that I've had since it started five years ago. I slept not one wink, felt as if dipped in a deep acid bath. So the next day I staggered in to see my GP and ask for a treatment to knock my persistent yeast infection on the head. I think my rationale was that, if I could at least sort one thing out properly, I'd feel more in control again. I have tried cutting out sugar, eating more garlic and taking a good bacteria daily plus used over the counter treatments many times in the space of two months. . The GP obviously thought I was deranged because I was so exhausted that I was fairly incoherent. And what part of saying "I've been up all night with burning pain in my peripheries and face - please can you give me something for my yeast infection" makes sense?! But she obliged me with a prescription and the yeast infection has at last subsided, as has the storm of SFN - apart from in my mouth (lips and gums) where it has continued to rage on and off.

I'm very lucky on lots of levels that my SFN, although always present as a numb tingle throughout my peripheries, mouth and left side of face, remits and relapses like waves on the shore. The painful burning has, by and large, turned relatively polite most of the time these days. But instead of pain flares I'm often caught off my guard by looking round while crossing a road, or looking up at a bird or fruits in a tree, or a shift in floor surface - and then this wave of vertigo will hit me out of the blue. Sometimes I will use a cane to give me more confidence. Most of the time I just go forth and only remember that I'm going numb when it's too late and I'm swaying and lurching. I don't get the bolt of lightening pain in my knuckles or wrists anymore either. Things are changing. For the better? I don't think so.

Once every few days flu-like aches and feverish sweats hit me like monsoons with no prior warning - or I'll wake up and know it's back and I'm due for a 24 hour storm. Do others have SFN that comes in this way? I try and try to find the triggers each time - sometimes I think it's a few hours in the sun, other times I think it's because I've got chilled, then I'll think it's something diet related but no amount of eliminating food groups makes any odds. Is this a sign of autoimmune neuropathy I wonder - the relapsing/ remitting pattern?

I can't say I'm looking forward to having this lip biopsy tomorrow morning - but, like my awful 7 attempts at spinal tap - if it shows up a reason for all this nonsense it will be worth the bother. If not - well at least there's not a great deal of me left to be invaded now!

HI MAT...

I can say that yes this is a confounding disease...I too see no patterns as to why I get a blast of pain. I try and look to the past and think of what I did that caused the flare and I am at a loss each time. I even look for patterns when I am feeling good and still find no real answers.

I am going on a year of this brutal experience and mine seems to be a more constant as of late...it used to come and go abit...but now its constant pain and what varies is the degree.

I've tried elimination diets...vitamins and supps...excercise...massage...and nothing really helps or hurts...it just is.

Personally I think my PN is mediated through dysfunction of the AI system... but no way to prove it and if you can't prove what is happening then the docs will provide no real remedies or disease modifying treatments.
So we wait until science catches up to us.

I have a skin biopsy tomorrow while you have a lip biopsy...hopefully we and the docs get more insight as to what the heck has gone wrong.

Feel better...cheers.

Sven

Mat and Sven, I hope that the biopsies goes well for you both tomorrow and are helpful.

Good Luck to both of you, Mat and Sven tomorrow.

Thanks Sven. I'm sorry you are suffering this terrible affliction too and also don't know the cause. I suppose I am lucky that at least I had a few years of inflammatory arthritis to signal to my doctors that it probably does relate to a rheumatic/ inflammatory process.

My bloods still clearly show inflammation despite the absence of visibly swollen or painful joints so this indicates that my SFN is part of an inflammatory process. Also, after nearly five years of absent autoantibodies (my rheumatoid factor was a weak positive for the first year of RA diagnosis), my ANA has suddenly become a clear positive.

I had a lumbar puncture which showed paired oligloclonal bands early last year - also showing a systemic process is occurring. So I may very slowly be getting somewhere at last but even if today's lip biopsy reveals the same sort of thing (and my punch biopsies last year did not) it's often still a case of two steps forward and another one back - especially where getting more disease modifying treatment is concerned.

I'm now writing this with very swollen, stiff knuckles - fingers jutting out with electric jolts when I type. My daily battle to loosen my knuckles is beginning and actually I celebrate this somewhat because it suggests some form of inflammatory arthritis, which in turn suggests rheumatic disease such as Lupus or Sjogren's. I'd give anything to get back out of limboland and get doctors to acknowledge the SFN as a sign of active disease - as I'm sure you would too. But celebrating swollen, stiff knuckles - how sad is that?!

Best of luck with your punch biopsies today.

Thanks so much Kiwi - it's the anaesthetic I'm dreading a little - not good at oral procedures at all!

Thanks Echos - very kind of you.

The lip biopsy is not a horrific procedure. Just a little numbing of the area (no different than if you have dental work done) and then removing the glands. They typically put in a couple very small stitches and give you a few days of oral antibiotic...just in case. Infection is possible since it's involves the mouth and location of numerous germs/bacteria. I found the area healed within a short time and although I have a small bump on the inside of my lip (common), it is NOT bothersome at all.

All depending on your pathology dept, it can take anywhere from a few days to two weeks to get the results. I certainly hope they use a grading scale (based upon foci present within the 4mm sq area) and not give just a general assessment of the tissue.

Please update us after your procedure and let us know how it went and how you're feeling.

Hi there,

I have had the Lip Biopsy and i'm in the UK. I found this to be fine. I too had a horrific time with L Punch, i think they tried about 7 or 8 times. My SFN has flares too. I am thinking the latest flare was down to doing to much in our gym. I have never done gym work before and did 2 weeks, then i paid for it as SFN flared in places it hadn't before.

The lip biopsy is fine, it only took about 15 minutes. I have no numbness or anything now. I got my results and didn't show sjogrens.

Hi Loulou. Lip biopsy all done. I agree about exercise as potential trigger for SFN. Do you have any other connective tissue disease or RA diagnosis or any other possible cause for yours? Was anything significant found in your LP? I'm really apprehensive about no Sjogrens but this is the result I'm expecting.

Thanks Enbloc. It was pretty simple as you say. Only thing is that NHS shortages mean that I couldn't be given any water to drink after and a UK heatwave meant all of us were terribly overheated - complaining bitterly to each other as no air conditioning in the hot theatre! No antibiotics administered - just instructions to start rinsing with salty water after meals tomorrow. Hope mine doesn't get infected as the gallbladder keyhole wound did exactly a year ago!

They said I would get an appointment to see oral health consultant again in three weeks for the results. It's the same large university teaching hospital lab as Dolly the Sheep study came from so I think/ hope they know what they are looking for. She said it was the decisive test for Sjogrens so I'm very apprehensive about these results - if negative then what? If positive will it lead to further treatment? The letter from rheum registrar says that as no sign of inflammatory arthritis now, further immunosuppressants are not warranted. Nevertheless it will be good to have some clarity from this latest clipping at least. They got four salivary glands out - one "juicy big one"!

I hope you get some results. If it is positive or borderline, they will probably offer plaquenil. Have you ever tried it?

Thanks Healthgirl. I was on Plaquenil with methotrexate and latterly on its own for 18 months. It worked well for me but unfortunately it gave me a slow form of anaphylaxis so was forced off it eventually. I've tried four DMARDs altogether now - three would have been drugs used for primary Sjogrens. This is why I'm not that hopeful that a diagnosis of Primary Sjogrens would help my treatment options.