Author Topic: Anyone have small fiber neuropathy?  (Read 3125 times)

jazzlover

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Anyone have small fiber neuropathy?
« on: June 21, 2012, 08:35:21 PM »
My issues with my feet is getting really bad. My podiatrist has tried several injections, including a steroid injection yesterday. Still no relief.

I wonder if I need to see a neurologist?

http://www.thecni.org/reviews/13-2-p07-treihaft.htm
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis

Gayle

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Re: Anyone have small fiber neuropathy?
« Reply #1 on: June 21, 2012, 08:56:16 PM »
Hi Jazzlover,

I don't have this but just wanted to say sorry your having such problems. Hope your Dr can find something that will help or maybe you should see if the Neuro can.

Gayle

Piebird

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Re: Anyone have small fiber neuropathy?
« Reply #2 on: June 21, 2012, 09:44:12 PM »
I have neuropathy trouble.

I would defiantly see a neurologist!

They can confirm a diagnosis and help you to stop the progressing of the problem.

It is much better to treat things earlier then later.

jazzlover

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Re: Anyone have small fiber neuropathy?
« Reply #3 on: June 21, 2012, 10:27:16 PM »
I hope I'm not too late. I'm getting ready to go on vacation (HA!) and can't get to a neuro till late July or even August. I think I'll call my Dr on Monday. I don't even know if we have a good neuro in this area.
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis

anita

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Re: Anyone have small fiber neuropathy?
« Reply #4 on: June 22, 2012, 05:26:33 AM »
You should see a neurologist, but keep in ind there are over 100 causes of neuropathy.  Several antibiotics, chemo drugs, and vaccines can cause toxic neuropathy, while diabetes (EVEN pre-diabetes) can cause neuropathy.  Of course Sjogren's can cause it as well.

If you have burning pain in your feet, you may need a skin biopsy for small fiber neuropathy.  However, treating the neuropathy from Sjogren's isn't easy.  There are several drugs used (Neurontin, Lyrica, Cymbalta, etc), but they are hit/miss as for whether they help.  Some have really good results, while others, not.

You should also have your B12 checked as low B12 is a very common cause of neuropathy...and an easier fix.  It never hurts to get on some B12 regardless of your level as it may help relieve symptoms from other types of neuropathy a little.

50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

jazzlover

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Re: Anyone have small fiber neuropathy?
« Reply #5 on: June 22, 2012, 09:19:38 AM »
Thanks. I've been on B12 shots for about 10 yrs. Wish it would help!
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis

lostone

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Re: Anyone have small fiber neuropathy?
« Reply #6 on: June 22, 2012, 03:29:33 PM »
If its progessing up the legs, or in the arms moving inward toward the core of the body,, I would think sensory, its a odd thing,, water hurts, you advoid things that make it hurt, you pretty much cant take life, even walking becomes harder then normal,, I struggled all last weekend trying to help my son move,, and I have paid for it all week, I suggest you call your pcp,, and DEMAND you see a Neuro, there far and inbetween, and appts take months, but they have slots set aside for this type of thing, the people they see are allready established patients, with there ailment known,, but they do have slots available for this type of thing, its not something they should wait months for, again, not many of them care anyway,

anita

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Re: Anyone have small fiber neuropathy?
« Reply #7 on: June 22, 2012, 04:24:12 PM »
Well, I'm not surprised the B12 didn't help.  It does for some, but only if it's related to a low level. 

When you get to the neuro they always start with the EMG/NCS.  Please keep in mind these do NOT show small fiber neuropathy...only large fiber.  The only way to really confirm small fiber is with skin biopsy.  Is the pain a burning sensation, sharp, or pins/needles?  My pain literally feels like someone is smacking the bottom of my bare feet with a board or something...best way I know how to describe it. 

Careful using heat.  Many think it makes it feel better, but actually heat can fire up the nerves and cause more pain in the end.  biofreeze can help with the burning type pain and a few (not a lot though) on the neuro forum report lidoderm patches as being helpful.  It really comes down to knowing the cause (which can be VERY difficult to isolate).

If it is related to the Sjogren's, IVIG may be helpful.   

Have you had a GTT (2-3 hours one) to determine if you are glucose intolerant at all...even pre-diabetes?

50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

jazzlover

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Re: Anyone have small fiber neuropathy?
« Reply #8 on: June 22, 2012, 05:16:23 PM »
Lostone... yes, it's progressing up the legs. That's why I'm getting scared. I thought it was due to tendon pain, as I have pain if I press on my legs.

anita... yes, burning, sometimes very sharp pains. I guess it's pins and needles. YES, to a board smacking my feet. Constantly. I can barely walk. The more I walk, the worse it gets.

I'm so afraid of the EMG. I hear it's really painful. I'm sure not many neuros would bypass a chance to torture their patients.

What's the difference between small fiber neuropathy and neuropathy??

Oh.. PS... I'm very small and don't even eat sugar, so diabetes would be rare, I think. My regular checks of blood sugar are fine.
« Last Edit: June 22, 2012, 05:18:37 PM by jazzlover »
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis

Piebird

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Re: Anyone have small fiber neuropathy?
« Reply #9 on: June 22, 2012, 05:23:45 PM »
Don't let being scared of the pain from the test stop you from having the test done.

I have had the EMG test lots lots of times. It only feels like a flick to me. Or the snapping of an elastic band.

eyeamdry

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Re: Anyone have small fiber neuropathy?
« Reply #10 on: June 22, 2012, 05:31:21 PM »
Jazz- I just want to say something about having diabetes.  Because you are small does not mean you won't get diabetes.  My daughter (when she was 27) and weighed 110 got Type I diabetes.  She is 5'2" so I think you can say she's small.  How much sugar you eat has nothing to do with getting diabetes as far as I know.  Maybe someone else will come in on that.  But, any size can get diabetes.  Type I is insulin dependent for the rest of your life.  Type 2 has more to do with diet, exercise and meds that can control it.  Lucy

anita

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Re: Anyone have small fiber neuropathy?
« Reply #11 on: June 22, 2012, 06:07:24 PM »
Small fiber neuropathy just means it's in the unmyelinated fibers where regular peripheral neuropathy can effect any large fibers, nerve roots, etc.

http://en.wikipedia.org/wiki/Small_fiber_peripheral_neuropathy

The EMG only checks the large fibers and major nerve problems.  Skin biopsy checks the small fibers. 

Type 1 diabetes would be rare starting as an adult and type II involves more diet, so you're probably right about the chance of it being diabetes is very small. 

The pain from the EMG isn't that bad...but can be a little uncomfortable.  The skin biopsy isn't bad either.  They numb the site where they take the samples...which are only about 1/8 inch in diameter.
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

jazzlover

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Re: Anyone have small fiber neuropathy?
« Reply #12 on: June 22, 2012, 09:49:37 PM »
Thanks for the info on the EMG.. I feel safer now!! ;) I appreciate everyone's input on this.

On the diabetes.. I'm 61 and I doubt I could get Type I at this age.

eyeamdry... I'm very close to your daughter's height and weight.
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis

Linda196

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Re: Anyone have small fiber neuropathy?
« Reply #13 on: June 23, 2012, 06:09:34 AM »
Just a note regarding Diabetes. There is a new form evolving called Latent Autoimmune Diabetes of Adults (LADA) or Type 1.5.

When you hear of an adult needing Insulin to manage newly diagnosed Diabetes, it's probably this form. Established Type 2 Diabetics who have been maintained with oral hypoglycemics, diet and/or exercise may sometimes progress to Insulin, but thats not quite the same thing.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at http://www.sjogrensworld.org/chats.htm

jazzlover

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Re: Anyone have small fiber neuropathy?
« Reply #14 on: June 23, 2012, 01:24:15 PM »
Interesting... but if my glucose levels are good, do I need to worry about that??
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis