Small fiber neuropathy
 

Hi, I have joined this group looking for people with same diagnosis that I have just been diagnosed with, small fiber neuropathy.
At this time the neurologists best guess is that it is due to having had gastric bypass surgery seven years ago and now having multiple vitamin deficiencies.
The pain is terrible, burning, aching, stabbing, electrical shocks, in my feet, toes, legs, thighs, knees, ankles and now hands and fingers too.
It's so frustrating to have this pain and still try to work (I do physical therapy in an acute care hospital), I can't take meds because I need a clear head for work. I have been prescribed a ketamine infusion cream from a compounding pharmacy that helps some, but ketamine soaking into blood stream still is giving me side effects of sleepiness and "foggy brain".
This is such a new diagnosis that I'm completely lost and don't know how to deal with this pain and the doctors haven't had much to offer. He had me see a hematologist for IV iron transfusions which I'm still waiting for an appt to do tranfusion. In the mean time do I just keep hurting and hobbling around work?
Fay help or advice would be greatly appreciated, especially any easy home remedies that anyone knows.
Thanks

Hello Sweetstacey.

Welcome to the NeuroTalk Support Groups. :)

We have a busy Peripheral Neuropathy Forum

At the top of the forum there are some "Sticky" information threads with vitamin information and other resources.

There is also the subforum of PN
PN Tips, Resources, Supplements & Other Treatments Forum

There are lots of helpful tips there Stacey.
take care

Welcome Sweetstacy. :Tip-Hat:

If you have been told your neuropathy is from nutrient
Deficiencies Then I would seek out a doctor to give you IV
vitamin and mineral treatments. Bypassing the stomach affects
Many nutrients which require acid for absorption in the intestine.
Some of these IV treatments are called Meyer's cocktails.

Along with iron -- B12, folate, zinc, calcium, magnesium
And maybe copper may be low as well.
Your B12 should be 400pg/ml which is the new lowest
Level.

My b12 is good as i do monthly IM injections to maintain, Vitamin D is another big problem for me as well as the anemia.

Low copper causes anemia, too. You should get that tested.

Monthly B12 doesn't always work for everyone. You should get tested again. Do not test within a week of your shot.

Some people have a genetic error (10-30%) and cannot convert cyanocobalamin to its active form. Are you getting cyano form?
There is a DNA test to show if you have methylation failure.
An MMA will also help show this problem. A low MMA result indicates that the B12 you do have is working. A high result is problematic and suggests you use hydroxocobalamin or methylcobalamin instead. (methyl form is usually obtained from compounding pharmacies).

This is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

You cannot assume that doctors are handling B12 therapy properly...some do not. The old lab ranges still do not flag levels as abnormal below 400pg/ml.

Good Morning Sweetstacey :)
 

update
 

I now have a date (this thursday) for an IV iron infusion, which he feels should help a great deal. I did a follow up at a bariatric center yesterday (different then where my surgery was done as i no longer live near there) and they pretty much blew me off, reffered me back to primary care said ill see you in a year.
The neurologists office upset me some as the secretary told me on a call i made for pain medication that my diagnosis was confirmed by punch biopsies results taht came back, GEE THANKS FOR CALLING ME TO LET ME KNOW.

So i will see how i feel after thursday and am truly hoping for relief as i am i at the point where i cannot work anymore. My co-worker thinks my expectations may be too high, you know all my eggs on one basket, i see her point in that anemia is not the only issue, so may not be fixed.

Small Fiber Neuropathy
 

Hi Stacy. You have my sympathy. I was dx'ed with SFN about a year and a half ago. All you symptoms sound very familiar as other will tell you. There is no cure for SFN; just pain management. You have been given excellent advice here already as to having certain vitamins, etc. checked as Vitamin D deficiency will certainly attribute to your symptoms along with the others. I just wanted to say that I started on neurontin (gabapentin) and while it seemed to work, I, too, have been unable to get accustomed to the grogginess, though I am not certain I gave it enough time. I have just switched to Lyrica at a low dose (50 mg) to see if it will work. It has not been as effective as the gaba yet, but I have only been on it for just over a week. Dr. said that I can up my dosage but first have to get used to the 50. All that being said, if you want to try either gaba or Lyrica, try it for at least a month to see if your body can get used to it. Many on these boards have both success and failure with these meds and you won't know until you try. If you are able, give it a try. A warning: Lyrica is tricky for some insurance companies to approve without trying the gaba first. My insurance finally approved it but my co-pay is $25. Not bad, but most of my other meds are free. I wish you the best. Don't give up!

Infusion complete....
 

Infusion done, i feel less fatigued but no change in pain symptoms. it feels like i have hot pokers on the ends of my toes and the ball of my foot feels like an elephant stepped on it every time i walk.
Hopefully with some more time the infusion will make a difference though im not convinced.
I bought 10,000 IU vitamin D3 over the counter yesterday wahooooo and gentle iron capsules.
I may not win this battle but damnit im going down swinging!

celiac
 

I had horrible small fiber neuropathy and the doctors couldn't figure out what it was. I suffered for years, the last 6 months being horrific. Finally, a dietician said she thought it was a food sensitivity, possibly celiac. It took many months to figure out how to eliminate every last spec of gluten from my life. The better I did with avoiding gluten, the better I got. It took months but it was worth it. At my doctor's suggestion, I have also recently eliminated all grains and that has helped reduce the pain further. Now I am only mildly bothered by it.

Hello Stacy,

I have found that taking gabapentin does deplete certain vitamins and minerals. It is important to have your vitamin and mineral levels checked with blood work.

I have found that I needed to supplement with Vit D3, Folic Acid and B12 as my levels were low. I also take a multivitamin everyday.

A word on the gabapentin ... You have to start out on a low dose, I started with 100mg. worked up from there because you need to be tetered up and if you have to get off of it, you must get tetered down, for if you have a fast withdrawal will cause problems and possible seizures.

Teter up your gabapentin with your dr's knowledge and teter down the same way. Stay safe with it as it can do more harm than good.

I was tetered up on 2400mg before the Gabapentin gave me the relief I needed, as I have RRMS, Spinal Stenosis in my whole spine and nerve pain in my legs due to they think RLS.

Good luck and God Bless you Stacy:hug:

scared
 

So i am a practicing physical therapy assistant in an acute care hospital. I walk alot for my job. I go to patient rooms to see pts all over the hospital, get them up and moving and prepare them to return home or determine need for rehab.
That being said, my boss knows i am visibly in pain when im moving and especially when im in the department between treatments as i tend to let my pain show a little more at that time instead of holding it all in.
Long story short she is questioning my ability to provide safe patient care.
What do i do if i cant do my job? i need to work to support my family! i would love to stay at home and rest my feet because that is when they feel the best but i am scared that she may make that decision for me. WHAT DO I DO?

cant get used to it
 

The problem is that i have to work and drive 1.5 hrs to work, therefore im having a hard time regularly taking the gaba or Lyrica because of the symptoms and making it unsafe for me. I dont know how to get used to it if i cant take it every few hours or even every day for awhile to get used to it, Very frustrating. :(

Sorry you have SFN to contend with. I have it too as part of Rheumatoid Arthrits so mine is immune mediated. It is very isolating owing to its invisible nature. Ive had severe eczema and Alopecia all my life unti my menopause and never thought I'd long for pain to show up in a visible manifestation but I do with this SFN because at least then i would believe in it more and stop thinking it must be all in my head! I don't take anything for mine either apart from co-codimol at night - but this is just because I'm so drug intolerant.

I find mindfulness helps me - and learning more about vitamin deficiencies here. Feeling more in control is important as part of pain management.

Ive just had flu followed by pneumonia and friends keep saying how great it is that I'm getting slowly better. But I'm only getting better from the chest infection - not the SFN which is flaring with my RA now and the pain is tremendous - can't tell them this though because they mean well!

You sound brave and generally the nurses I know are brave and also are more prone to these types of conditions - maybe because of long hours and physical and emotional demands your job puts on you.

Everyone tells me that there is no cure and that I have to accept my symptoms - and unlike yours mine haven't shown up in punch biopsies or any tests apart from probably as part of a confirmed systemic autoimmune disease such as lupus or vasculitis. Both of these would be with seronegative autoantibodies although I do have a diagnosis of Rheumatoid Arthritis - which seems to be in remission in my joints however. All pain and pins and needles etc are in my blood vessels and nerves symptomatically.

Mine has gone on for 5 years now although it worsened significantly when I finally stopped taking methotrexate by injection because of GI side effects. I've also tried three other disease modifying anti rheumatic drugs and had severe allergic reactions to them as well as to Amitriptyline, Gaberpentin and Cymbalta. I'm not prepared to try any more of the symptomatic treatments but an currently on long term Prednisolone/ steroids at a low dose. Each time I try to taper off I have stroke like seizure and the small finer neuropathy flares badly again.

So I know the feeling of despair - but I'm also a natural optimist and feel that if the cause can be pinned down it can perhaps be addressed. I do have brief periods where the pain reduces a lot - although the weird wet tingle usually continues in the background in my legs and feet and burning hands and feet. These brief periods of respite show me that there must be some hope of getting this thing controlled. So I monitor myself to try and work out what may help or not.

My GI issues/ GORD seem to be at the heart of things and although I haven't had a gastric band fitted I have recently had my gallbladder removed and this appears to have briefly influenced the neuropathic symptoms temporarily so I sense these things are closely related.

I was about to post about this actually but I've read very good things about Turmeric as a natural anti-inflammatory which seems to be positively life changing for some. You can either take it in high potency pill form or by making a paste using cracked black pepper and coconut oil and consuming with food. Would you be able to try this perhaps or is your diet too restrictive with the gastric band?

Good luck and hang in there with the courageous attitude. Mat

Hi everyone, I am new too...
 

SweetStacey I relate to all of your symptoms. I was diagnosed with sfn just last month and the symptoms have gone from being an annoying numbness in my feet to full-blown, sometimes very severe pain in both feet, traveling up both legs with bad burning and cramping, now also in both hands and sometimes my face, scalp and even outer ears! :confused: The neuro says mine is idiopathic as perhaps 50% of cases are (no known cause) so there is nothing to treat for hopes of improvement. I take gabapentin 2400mg, chewable Tegretol 200mg three times a day, tramadol for bad pain, and was just given Norco to try in the evenings when it all worsens but it didn't seem to help at ALL. I'm sorry you are suffering, you are not alone!

Hi mountaingirl I was just diagnosed this month also my symptoms have been feet, legs, groin, hands and back. I've started at 75mg Lyrica and still increasing it now to 300mg. My pain is worse when sitting, I get up and my groin is terrible. Seeing my neurologist in 2 weeks hopefully she may help.

PHIL

Nice to meeting you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Good perspectives for small fiber neuropathy treatment
 

I am a psychiatrist in Brazil with celiac disease discovered at the same time that the neuropathy of fine fibers appeared in my feet and then hands.
Embrora does not ingest gluten for all this time the neuropathy never completely disappears and floats between mild discomfort to strong burning and pain in the feet and sometimes in the hands besides small and fast shooting type pain elsewhere in the body. I tried immunoglublin infusion with a partial result. But it is expensive, requires a fight with the health insurer and requires hospitalization for several days. I gave up on this.

But I mean, I've been researching a lot about it. And I want to say that there are at least two substances in research that will bring effective treatment to repair fine fibers. These are ARA290 from Araim Pharma and XIB4035. The first substance looks like it will appear on the market soon. It has the power to activate the self-regeneration of the body. Alternatively, the other may be a locally applied cream to make the nerve network grow again.

I think it is important that patients ask for speed in these researches so that these treatments do not take as many and are already present in the course of our lives.

I'm new as well. KATO is my name
 

I'm was just diagnosed today with SFN and Autonomic Neuropathy. I'm was told that my neuro has ordered over 30 blood test. I'm was hit with this 3 years ago come April. It was like being hit with a rock up side of my head. It began severely intense and has increased in intensity. I'm have severe pins and needles and burning in my legs but not my feet. I know that is different. I also have an electrical sensation that starts at my spine and radiates to all of my body. It makes my toes curl and my hands draw up. This can last anywhere from a few seconds to 3 hours. I'm at my wits end. I take 4mg of Clonipin to help with the symptoms but it doesn't work well any more. I guess this is the beginning of a long journey. I have Lupus and many other malities that don't need to be mentioned. Thanks for your time and attention. I look forward to contributing when I can.
God bless you all.