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Old 02-15-2012, 03:38 PM   #1
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Small Fiber Neuropathy - Please help/respond

Hi everyone-

I was recently diagnosed with small fiber neuropathy after 2 years of searching for answers (3 GPs and 2 Neurologists who both agree on the diagnosis) I am on this board because I do believe I have it but I am terrified about its progression and I think there is an underlying cause but have been told its idiopathic. It started 2 years ago with burning feet at night. It was so intense that I could not sleep. The only thing that helped was decreasing the temperature in our room to 60 degrees or below. I have had 3 MRIs, 2 lumbar one with contrast one without and 1 cervical spine MRI and 5 different blood tests done (each doctor wanted to rerun their own but all tested the same, thyroid, diabetes, vitamin deficiency, etc) and no underlying cause could be determined. Since the inception of my initial symptom things have got really bad. I occasionally have a stab like feeling in my leg that feels like someone took a sewing needle (thin *****) and stabs me. If I stand longer than one minute my feet start swelling and turning red, then purple. When that happens, they burn, itch and throb. O have been told that it is erthomelgia caused by SFN. My nails have recently become very brittle , one toe nail almost completely fell off for no reason and a big chunk of a finger nail recently broke off. The progression is alarming, I honestly believe I may not be able to stand in a few years. What can I do? I dont exercise as this makes it so much worse. It was a hard thing to give up because I love being fit and having a body that reflects that but I can't take what it does to me. Its hard to accept an idiopathic diagnosis. I have no flare ups just a constant linear progression, never had relief since it started. I have tried gabapentin, cymbalta, lidocaine patches and the only thing that helps me to overcome the feelings in my legs is to take sleeping pills. The sleeping pills dont help the feeling but they make me fall asleep. I guess I just want to connect to someone who understands. Having a diagnosis finally is not all it is cracked up to be since I was told I just have to find things that help manage my symptoms since they can't find an underlying cause... which makes it feel even more hopeless.

 
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Old 02-19-2012, 07:01 PM   #2
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Re: Small Fiber Neuropathy - Please help/respond

Hi heather0314
I am so sorry that you too have this diagnosis! I have SFN, as well as rheumatoid arthritis and fibro. I have has this now for almost 7 years. I started posting, asking the same questions as you, five years ago.

I went thru so many treatments, including massage and acupuncture. No medications helped at all and I had so many side effects from everything I tried.

My doctor, 2 neuro's and my rheumy all saw that I was in no shape to work so I have taken extra early retirement.
That I am not working has made the biggest difference in the progress of this disease.
I am able to rest when I can, and believe me, rest is one of the keys I've found to managing this. Along with extra attention to nutrition and the love of my hubby and my little 4 lb chihuahua/yorkie love bug!!

Unfortunately, I am now on a timed release narcotic to handle the pain. That is a route I fought against, but made peace with is as I realized my life with so much pain was no life at all. I have tried every medication known for peripheral neuropathy, antidepressants, those prescribed for seizures and still nothing helped. I begged my doctor for some sleeping pills too, but got only 50 pills to last a year, so I am pretty careful with them. They have saved me from some of the longest nights one can ever imagine, crying in the bathtub for some relief, hardly able to walk, but lying down was worse!

I wish I had some answers for you -but it is a day to day grind to deal with. Some days I feel not as bad as others.

I really feel for you!! I wish you all the best and know you are not alone!
Best wishes!!
Daisy

 
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Old 02-20-2012, 06:31 AM   #3
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Re: Small Fiber Neuropathy - Please help/respond

Hi Daisy,

Thank you for the reply. I guess that's what I'm the most afraid of, having to use narcotics to manage SFN and not being able to work and having SFN dominate my daily life indefinitely like it already has. I am only 28 and the thought that this will continue it's trajectory and progression at the same rate terrifies me. Have you tried the IV treatments? Did you explore all possible underlying causes and didn't find any? I have a follow up appointment tomorrow but to say I was less than optimistic would be an understatement. I was already told at my last appointment that the lumbar MRI with and without contrast was their last test to find an underlying causes and that was only done because they were curious about my age and progression rate, otherwise they wouldn't have done it and just declared it idiopathic after reviewing the previous tests. I don't know what is worse, having it declared idiopathic with no hope of stopping the progression, or knowing how debilitating SFN is on it's own with or withoutvan underlying cause.

 
Old 02-20-2012, 06:33 PM   #4
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Re: Small Fiber Neuropathy - Please help/respond

Hi Heather
I hope your appointment goes well! I am sorry that I didn't explain that my SFN has been deemed related to my Rheumatoid arthritis. The second neuro I saw just said it was autoimmune related and that was that. I have't had any IV therapy. No one has offered any kind of treatment to me. The acupuncture, B12 injections,the massage therapy have all been my own ideas. The doctors I have seen have not offered me anything at all, other than perhaps that orthotics would help me. But I have spent so much $$$ on trying to find shoes I can wear comfortably.
I am really so sorry that you are so young with so much life to live and SFN is robbing you!
An idiopathic diagnosis really isn't much help, but knowing that mine is autoimmune really hasn't helped me find any relief either. It is just frustrating as all get-out!
The narcotics (that I have fought against for so long) are the major thing that helps, along with rest. Others are lucky to find other meds like Neurontin really help them. I am lucky in that I am able to cope with the side effects of the narcotics.
If you get any information that puts any light on SFN, please come to this forum and share! I have learned so much from this board from others like you who cope with the same problems. If it wasn't for the people I found on this board, I would have lost hope years ago!!
My very best wishes,
Daisy

 
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Old 03-01-2012, 08:02 PM   #5
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Re: Small Fiber Neuropathy - Please help/respond

I am diagnosed with idiopathic polyneuropathy with a query about small fibre neuropathy.
I just had the sural nerve biopsy 3days ago. Very painful & the numbness is over my ankle & the entire top of my foot. Today electrical shocks started.
I know exactly how you feel I have gone through the same ordeal with burning feet, up my legs & now my hands, I too want to know exactly what is going on.
I did see a Dr. in a Pain Clinic who changed my medication regimit & its seem to be working. I take lyrica, cymbalta, morphine, amitriptyline. I have oxycodone for breakthrough pain
I feel so bad for you. All I can say is to take 1 day at a time as I am. We also need to talk about shoes , what do you wear on your feet?

Last edited by June89; 03-01-2012 at 08:18 PM. Reason: omissions, sorry

 
Old 03-05-2012, 11:01 AM   #6
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Re: Small Fiber Neuropathy - Please help/respond

Thanks to all for being and sharing here!
I finally got idiot- SNF Neuropathy from years searching. See neurologist in Boston.
Having trouble finding my way with pain, Meds, alternative and supplements.
Today it felt good to hear others because then I won't pull my hair out.
So many have neuropathy but we all can feel alone.
I wish winter was not ending for first time since outside w/ flip-flops in the cold was my go to quick relief.
Still the shoe issue, pain Meds road, getting family to understand, trying to work and getting the rest mentioned
Each day don't know until wake up.
Seeing neuro in 2 weeks and asking for painmanagement referral in Boston.
Sorry if tangent, not my best day.
Just have to mange today.
Peace, Beth

 
Old 03-05-2012, 12:04 PM   #7
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Re: Small Fiber Neuropathy - Please help/respond

HI Capewind. I am waiting for a proper diagnosis as well, I think it will lead to small fibre neuropathy. It is hard for family to understand all you go through & it starts when you wake up, u never know. I had a referral to a chronic pain clinic and my Dr. there was very understanding of pain. She told me that out of 10 the best I can expect is a 5.
She changed all my medication & its been good over the last 2 months. If I get a day with more pain I have oxycodent for breakthrough pain. Shoes. I have tried rocker shoes 2 sizes larger & the widest possible. They help as the toe box is very large & nothing touches the top of your feet. But it gets hot in the shoe & hot hurts. The best I have found is a slipper made by isotoner. They have a open toe with a wide velcro band that u can tighten to your liking. I even made very soft insoles to add for comfort. Take care. To help family understand ask them to read about neuropathy & that really helps.
all the best, June

 
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Old 03-05-2012, 01:01 PM   #8
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Re: Small Fiber Neuropathy - Please help/respond

Thanks, Michael
Have summer water shoes, got through N E winter with uggs.
Did a mindfulness painmanagement many years ago so hope to revive skills.
Cannot tolerate pain Meds. Did Ultram bad for me because has Effexor in it. The withal is horrible plus increasing pain. Do Neurotin ( brain loves it ) for years now up to 800 4X day. Also have Lidoderm patches but they take time to work for a short time and not usually helping more than a 6. The breaking through, flare-ups and chronic nature is forces me to question working. :[
I was hoping I was pre-diabetes but not.
I like others was very healthy. But I have had strong & antibiotics.
Best wishes for everyone who visits here.
Peace, Beth

 
Old 03-05-2012, 01:03 PM   #9
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Re: Small Fiber Neuropathy - Please help/respond

Thanks, Michael
Have summer water shoes, got through N E winter with uggs.
Did a mindfulness painmanagement many years ago so hope to revive skills.
Cannot tolerate pain Meds. Did Ultram bad for me because has Effexor in it. The withal is horrible plus increasing pain. Do Neurotin ( brain loves it ) for years now up to 800 4X day. Also have Lidoderm patches but they take time to work for a short time and not usually helping more than a 6. The breaking through, flare-ups and chronic nature is forces me to question working. :[
I was hoping I was pre-diabetes but not.
I like others was very healthy. But I have had strong Meds & antibiotics.
Best wishes for everyone who visits here.
Peace, Beth

 
Old 03-10-2012, 08:18 PM   #10
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Re: Small Fiber Neuropathy - Please help/respond

Hi Heather,

I have Idiopathic Small Fiber Neuropathy also, I was diagnosed through a skin Biopsy recently, I demanded the IVIG I was told its too expensive and I demanded it again so my Neurologist is going to apply to my insurance for it, he says 90% chance it wont go through but I will appeal it and get a patient advocate and give them alot of appeals there are alot of studies that show IVIG works for small fiber neuropathy. The excuse they use is that its not immune related, the heck it isnt all the reactions we have is immune related, if they cant find a cause and its not auto-immune its probably a toxic reaction, a Toxic reaction that is basically inflammation gone out of control it should respond to Prednisone as most Idiopathic Small Fiber Neuropathies do respond to Prednisone, the bad part is that Prednisone has alot of side effects, I used it for 3 months at 30-40 Mg daily and it allowed me to go back to work and get some of my life back, I did taper down as I had gained about 40lbs on it and I didnt enjoy the side effects, anyways, I was getting myself ready for the IVIG and also the doctor was betting that my skin would come back negative and he was going to farm me out to some other specialty, the look on his face when he said it was positive was priceless he told me he didnt think I had Small Fiber Neuropathy, I guess he thought all the burning, squeezing, itching, pain was in my head. Anyways he offered Prednisone again to which I said no way, and then I told him about a novel therapy called IVIG thats when he got all defensive and said its $6,000 and the insurance wont pay, anyways after alot of back and forth I pushed him into doing the paperwork for it, the good news for me is that most of my pain and stinging is gone, I just have this infernal itch that has taken over, the itch has improved and the stinging also, I am on nutritionals all the way, Alpha Lipoic Acid,acytl- L-carnetine, Benfothiamine, and I give my self B-12 shots, I have gone gluten and dairy free and avoiding junk food, sodas and crappy food, got myself a juicer and juice organic vegetables daily, all of these things have helped my pain from 10 to 1, I had the redness and burning in my hands and thats gone, all this happened in a span of 6 months, I feel its from a Toxic reaction as they have done every blood test known to man and I am apparently the healthiest person on the planet according to my blood tests and I guess thats why it was a shock to the Doctor when he got my skin biopsy. Oh also do alot of Omega 3 oil and if theres alot of burning do evening prim-rose oil that helped me alot with the burning. Try and keep your spirits up, as no one around will understand the pain or the feelings you have, you have to go inside alot and muster up a strong will power to overcome this, I had a bad reaction to Anti-depressants and always throw back the samples they throw at me, anti-depressants do not help with inflammation they may alter brain chemistry(which really freaked me out) but small fiber neuropathy is big time inflammation. You might not like the next part and its exercise, you have to do it will help with inflammation you have to force yourself, the answer is not going to lie in a pill always, you have to change your life, oh and drink lots of water.

Hope that helps, Good luck, and you will be fine your body can heal especially at 28, I am 41 and I feel like I am 90% healed just this infernal itch which is improving, always have a positive attitude dont let the doctors negative doomsday attitude transfer to you, according to them I am going to have this all my life and its going to get worse, well its gotten better I have minimal pain and so much more energy, I guarantee you that in 2 years when they do another skin biopsy you will see that my skin fibers have improved and then the doctors will scratch their heads and say you never had small fiber neuropathy as there is no cure, hogwash.

All the best,

Greg

 
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Old 03-12-2012, 05:49 AM   #11
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Re: Small Fiber Neuropathy - Please help/respond

Hi, Greg, like all your info and to hear about your journey.
What is IVIG?
Seeing neuro in a week want to find out if ANYTHING left to test or try.
Have SNF per skin biopsy.
Do supplements but will add evening primrose.
Best to all here.
Beth

 
Old 03-12-2012, 12:24 PM   #12
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Re: Small Fiber Neuropathy - Please help/respond

Hi Beth,

IVIG is Intravenous Immunoglobulin therapy, they take the antibodies from the plasma of thousands of people and they clean the blood and test it for viruses, germs and so forth, then they give it to people who have immune mediated diseases, it is used for Small Fiber Neuropathy but its considered off label and so the insurance tries to find ways for not paying for it, but I think through appeals, help of doctors you can get it. Some Neurologists wont even mention it to their Idiopathic small fiber neuropathy patients and some do. So it really depends on your doctor and how much experience he has had with using IVIG, the ones that use it most seem to be Hospital/study center/University type setting doctors and sometimes individual doctors are well versed in it, but most of them will try the prednisone first and sometimes they say tough luck and just treat your symptoms by pain control with opiates and anti-depressants which I strongly feel only adds to the inflammation, Some doctors also use plasmapheresis which removes plasma from your own blood this is also expensive like the IVIG but plasmapheresis makes you weaker and more open to other diseases, Overall IVIG seems to be the best therapy but because of its costs and insurance haggling doctors use other modes of treatments with alot more side effects. Also forgot to mention they will use anti-cancer drugs to kill the immune system sometimes in combination with the prednisone. Some people are open to using chemo drugs in this manner but I think if your immune system is weak why suppress it destroy it, whats that going to solve, I would understand using those things in an auto-immune situations but when you have Idiopathic small fiber neuropathy most auto-immune tests have been done. So in Idiopathic small fiber it seems to be more inflammation response from the immune system but that maybe argued is also auto-immune but not in the sense of a disease causing it but a mono-phasic episode with a toxin, virus or alien, lol

Let us know how your visit goes, do you get alot of itch? pins and needles? Electric shocks?

Take Care,

Greg

 
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Old 03-12-2012, 06:03 PM   #13
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Re: Small Fiber Neuropathy - Please help/respond

Greg, thanks foe detailed info. I will ask my neurologist about the IVIG.
Do have pins needles razorblades knives burning itching.
I also do not want the Meds until there are no options and cannot bear pain.
I fought for the Lidoderm patches. They are better than nothing.
I will keep in touch.
Have been here for awhile but not alot recently.
Hug and thanks,
Beth

 
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