Small Fibre Sensory Neuropathy aka My Feet Hurt Like Hell.

You know how if you don’t say something out loud then it isn’t really real?  I’ve avoided talking about this outside of my immediate social circle because it really is a miserably boring topic:  I have sore feet.  All the time.

My feet started hurting in January this year.  It was after a particularly brutal heatwave.  The skin over the balls of my right foot started hurting. I thought it was because I had done a lot of walking in my standard uniform shoe – the Haviannas.  Because it was hot, I thought that maybe my foot had gotten sweaty and rubbed against the shoe.  The area on my foot felt raw – hot and burning pain, and yet it wasn’t sore to the touch. I couldn’t see anything on the outside.  So I ignored it, waiting for it to go away.

The pain didn’t go away. It spread to the rest of my foot.  And then it spread to my other foot.  Both feet burned all the time – a hot, burning pain, but from the inside.  I could hardly walk. 

It felt like the layer between my skin and my muscles or tendons was inflamed.  My feet ached and burned all the time, from the inside. The outside felt completely fine. I Googled and Googled, but nothing seemed to fit.  Eventually I went to the doctor who said it sounded neuropathy, the leading cause of which is diabetes.  That scared me.  I was sent for all sorts of blood tests including a fasting diabetes test. I have to say the waiting period for the results was quite scary.  The tests eventually came back:  all was fine.  Phew, but also ???.  So if it wasn’t any of that stuff, what was it?  I convinced the doctor to give me some anti-inflammatories in case they helped.  They didn’t.

The doctor suggested I visit an orthotist to see whether it wasn’t something structural that was causing the pain, but it wasn’t.  What the orthotist did say was that the Haviannas are a no-no.  Those 30 pairs of Haviannas in my cupboard?  Can’t wear them. 

She said she thought it could be some kind of neuropathy and recommended I go see an orthopedic surgeon.  Which I did.  Very nice chap actually.  He did all sorts of tests.  Nothing wrong.  He said it sounded like what he calls "Burny Foot Syndrome" aka as neuropathy and suggested I see a neurologist.

By this time, I am feeling completely miserable about the situation.  Each time I saw a different specialist I was hoping they would find something ‘wrong’ so that we knew what we had to fix.  But no one was finding anything; and in the meantime my feet were aching all the time.  Burning hot pain.  The pain was causing my anxiety to spike like crazy.  I wasn’t having a lovely time.

Eventually I see the neurologist who does all sorts of weird tests including putting electrodes on me and shocking me, and sticking pins into my legs and feet. That wasn’t fun. I much preferred the lovely orthopedic surgeon chap.  But what the pin-poking neurologist did do for me is eventually give me a diagnosis after sending me for more blood tests:  Small fiber sensory poly neuropathy (SFSN).  Cause: unknown.

 It’s a bit of a mindf#ck actually.  It’s very hard to deal with the fact that I have a chronic condition, cause unknown. No cure.  It’s hard because it’s a big deal and it’s a small deal, all that the same time. It’s a small deal because there are so many other people who are dealing with FAR bigger problems that hot, burning feet.  My sister being one of them.  She has chronic oral dystonia.  Another friend has debilitating fibromyalgia.  I feel ashamed to complain about my burny feet.  And on the other side is the struggle to accept that I have a chronic condition.  How can this be so?  SURELY there must be a way to fix it?  You can’t just have something wrong and not be able to fix it???  That part is hard to deal with.

And so I tried to ignore it. I thought if I ignored it, if I didn’t pay it attention, it wouldn’t really be there. SORRY CAN’T HEAR YOU FEET, LALLALAAA.  Except that the body is a powerful thing.  And my body was getting constant messages of pain.  My body was sending an alert to my brain all the time BE CAREFUL, THERE IS PAIN! PAIN MEANS DANGER! DO SOMETHING! FIGHT OR FLIGHT!  HERE, LET ME THROW SOME MEGA STRESS HORMONES IN YOUR BLOOD SO YOU CAN FIGHT THE DANGER!  Here I am singing to myself with my hands over my ears lalalaaaa but my body wasn’t caring.  It was doing it’s thing.  So now I had sore feet AND I was extra anxious.  Lovely.

I went to see my psychiatrist who I love dearly (I have the best shrink in the world) to ask her whether we shouldn’t up my regular ADs which clearly weren’t working because hello anxiety overload!  And then she explained that even though I can ‘logic’ my way through a lot of stuff, my body wasn’t caring about my ‘I just wont buy into that pain thing’ and that the pain was causing a stress response in my body which was increasing my anxiety.  She asked me how often my feet hurt.  I told her all the time.  She asked me whether they were hurting right now. I told her that they hurt right now.  Right Now and All The Time. She said no wonder I am feeling anxious.

My psychiatrist suggested that I start on a low dose of Amitriptyline (something the neurologist had suggested as well, but I wasn’t keen to try until I had cleared it with my shrink).  Amitriptyline is actually an anti-depressant but is also used to treat chronic neuropathic pain (pain due to nerve damage) and fibromyalgia.  It is often the first line treatment for people with chronic pain.  As far as I understand, the medication interferes with the messages of (chronic) pain to the brain.  It doesn’t always work, but touch wood – it seems to be working for me.  I can now go for several hours without thinking about the pain.  It really has helped a lot. My anxiety is back under control and my feet definitely feel less painful / burny.  I am so relieved that we have found something that seems to help. It would be great to have no pain at all, but compared to how bad things were – I am very grateful. Added bonus – the Amitriptyline has made me sleep better too. Yay!

So there you have it – the sad, boring story of my sore feet.  I am sharing it because I am so relieved to have found something that has helped me that I wanted to share it with you, in case it could help you too.

And in a crazy turn of events, an old infertility friend of mine has just been diagnosed with it too!  We met online about 12 or 13 years ago. We had both lost children, both struggled to have more.  And here we are, so many years later with yet another chronic condition to deal with.  We beat infertility back then Julia, we will beat this too. 

And now I am taking my painful, burny feet to bed because we are all tired.  (My feet hurt a lot at the end of the day. But less than they did before!)

Comments

[Alexicographer]

Oh no -- I am sorry, that sounds quite dreadful. My DH has some kind of neuropathy in his legs (I don't think it's the same kind, or as constant), and -- not good.

At the risk of offering assvice ... some time ago I broke an arm (er, one of my own!) really badly and after the resultingly necessary surgery found a TENS unit really helpful in managing the pain. You can google it, basically it uses very mild electrical stimulation to trick/distract your nerves. No idea if that would be useful for what you're experiencing but in case it may be somewhat helpful (will not, in my experience, help you sleep better, but conversely, can be used with Amitriptyline and anything else, as far as I know, since, you know, a different tool and thus not going to interfere).

[Boulder]

Hi, Love!

I have had neuropathy since my many months hospitalization in 2003/4 from my second trimester loss.

I didn't even understand that I had it or that it was developing, because in the 12 times I was hospitalization for infection and "retained products of conception" (aka my baby and placenta), which calcified, I was dosed on crazy high morphing to keep the pain of my uterus under control.

Turns out that one kid the meds was responsible. It started in my toes, went up my legs and at a certain point started I. My finger tips and went up my arms.

Lovely. I just thought I had parts of my body "tingling" (actually more like burning on fire) from being bed bound. And it felt like tingling because I was on morphine. And benedryl and Xanax and Ativan and three antibiotics, and fluids. And I kept having veins blow until the PICC line.

Turned out that when I released for home nurse care, and with only Percocet, the tingling was that NEVER ending burning.

We tried neurologists - who told me it was impossible. Guess where I found my answers! In HIV/AIDS boards where people had similar symptoms from long antibiotic/anti fungal meds.

I was told, NOPE, there is only one case in the journals (actual books) of one man in Japan.

It was the most invalidating time in my life, when you take out infertility, miscarriages, and the why does my UTERUS HURT DO MUCH???

I am so sorry to hear you now share this with me too in a way. Gabapentin (Neurontin) was one of the only meds that ever helped. I finally gave up, and have my brain set to override. But my PTSD and anxiety are insane.

I wish your med had worked for me. But if it helps, gorgeous, I understand. I am so sorry.

xoxo

[Jen@FrugalSteppingStones]

I have fibromyalgia and I also have neuropathy thanks to my immune system loving to munch of my peripheral and central nervous system. The Lyrica I used to take for my fibro helped significantly. It is related to gabapentin (Neurontin) both of which could help with neuropathic pain. Cymbalta (an antidepressant) or amitriptyline supposedly can help too. Thankfully since baby #3, my immune system is a little better suppressed and I have been able to live without Lyrica. Nerve pain is the worst though- it is a true torment. Just as bad as my fibro!

[Sandra]

Hi there

My 5 cents worth, Co enzyme 10 helps tremendously in getting the meds to work. Also helps the liver to process the medication. My "burny feet" have gotten immensely better since starting with it.
Also, don't put your feet in cold water, use tepid to warm water for relief. The shock of the cold turns those receptors on.

Feel better

S xx

[Rachel]

Long-time lurker here, but now there's something I actually know about!

I also have small fiber neuropathy (plus other fun stuff) as a result of a very bad Lyme Disease infection. My neuropathy shows as either pain/burning or complete numbness. For me, the combo of amitryptaline and gabapentin have really, really helped. For some reason my balance is off as a result, but it's a trade-off I'm willing to live with. I wasn't planning to be a tightrope walker anyhow.

I hope your feet feel better soon.

[kamund]

if you don’t say something out loud then it isn’t really real...loved that one

[Evilisa]

How awful! I have chronic feet pain but it's self induced (hockey, clumsy, many surgeries) and I don't wish this on anyone.

Keep doctoring up. There must be something one of these educated professionals can do to solve this.

I'm really sorry.

[Maja]

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