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.