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Old 03-29-2010, 01:36 PM   #1
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LoriAllen HB User
recently dx small fiber neuropathy

For over three years now i've been looking for answers about the severe pain in my hands and feet. Three neurologists in my home state said my problems were psychosymatic, one rhuematologist said I had a 'chronic pain syndrome' ?? 20 minutes with a neurologist at the mayo clinic and she suspected small fiber neuropathy and had a thermoregulatory sweat test done wlhich confirmed it. Getting the dx was a big relief!! But after a lot of tests they were unable to find an underlying cause. The neuro at mayo said i didn't need to see a neurologist regularly because all that can be done is pain management. My trip to mayo was a few weeks ago and since then I've lost most of the feeling in two fingers of my left hand. I realize that SFN is progressive, but I feel that someone should be monitoring that progression. What if it progresses to "large" fiber neuropathy? What's the worse case scenerio I might have to face in the future?
My family dr doesn't seem to know a lot about the disorder and I'm feeling rather abandoned. I lost my job over a year ago because of the pain and fatrigue, I was called a nut-case by almost every neuro in our state, I was denied company provided disability because of the lack of a dx, I was the primary wage earner in our family so we are now in bankruptcy, so "feeling abandoned" isn't exactly my biggest problem. lol but I do have questions, so I"m hoping someone who has unfortunately already been in my "painful" shoes can help me out. Thanks!

 
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Old 03-29-2010, 04:00 PM   #2
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Re: recently dx small fiber neuropathy

Having a diagnose is the first great step towards a cure and/or management of the disease, so it's great that you have one.

From what I've read SFN is one of the most difficult things to diagnose, not because of the tests, in fact a skin biopsy and the test they gave you, can confirm it rather easily.

The thing is that it's not a very well known condition and/or doctors(even neurologists), don't bother to even think about it. And there are not many places like Mayo where the doctors have both the expertise and the means to diagnose and treat it.

For example, I have SFN symptoms, but I've never ever been tested for it, and no doctor has even mentioned it as a possibility. I did got an EMG/NCV that showed some chronic damage to motor neurons, so there is also the possibility(I think) to have both sensory and motor dysfunction. This I believe, I really don't know.

About the cause, unless you're diabetic, or have a clear cut event that could have gave you this thing, chances are that you never find the underlying cause, which is one of the most frustrating things about neuropathy.

Finally, I was not aware that SFN was progressive in all cases, from what I've read, I thought that the only progressive neuropathic conditions were the acute ones, like GBS, or the only chronic one I know: CDIP, but maybe I'm wrong about this.

Did your doctor at Mayo told you this?

I ask because I could almost bet that some SFN affected fellow board members, have either managed to be clear or almost clear of symptoms, and in the worst case scenario, their conditions remain still, but I don't remember reading about SFN progression, specially in the clinically diagnosed people that post here, which by the way, are very well informed about this condition.

I hope you find support, and treatment at Mayo, what did they gave you for this? I'm all the way with you, sharing the frustrating path of visiting neurologist after neurologist, where all of them think that you're crazy.

My best wishes.

Last edited by stargrave; 03-29-2010 at 04:06 PM.

 
Old 03-31-2010, 08:07 PM   #3
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Re: recently dx small fiber neuropathy

Hi LoriAllen
I am one who has been told by the neurologist that I saw (who is supposed to be a specialist in SFN ) that it is indeed progressive. She told me that this is a very debilitating problem. That was not what I wanted to to hear!!
It is her opinion that mine is related to my rheumatoid arthritis. I have had it for almost 20 years. At first they investigated that the chemotherapy drug that I have been on for a good 10 years to help with the inflammation in my joints was perhaps a cause but that has been ruled out.
There are SO many medications to try, I know as I have been on most of them at one time or another. Unfortunately I am now labelled "medication intolerant" as nothing helped at all. But maybe one will work better for you. We all seem to be on different medications, I guess trial and error is the only way to see what may help.
My good wishes to you, I really hope you find something to ease the pain!
Take care,
Daisy

 
Old 04-01-2010, 10:49 AM   #4
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Re: recently dx small fiber neuropathy

The neuro I saw at Mayo told me that they are currently thinking that ideopathic sfn could be caused by a virus. I mentioned to her that in 93 I had a strange flu that turned my palms and the bottoms of my feet bright red and the skin peeled. The dr back then sent a blood sample in and he called me back a couple of days later saying that it was very important that i take a different antibiotic. I remember it well because the antibiotic was over a hundred dollars and i didn't have insurance. The neuro at mayo said that it is very possible that's what caused the sfn. My absolute worst pain is in the morning, when I first try to move, or in the middle of the night when i change positions. My husband now sets his alarm for 15 early and brings me a pain pill and a glass of water. A few days ago I spilled two full glasses of water and my pill bottle because my hands are so clumsy. Does anyone else have soft lumps on any of their finger joints that "zing" when touched? It's so nice to have people to ask these questions to. Before I went to mayo and got a dx, i think my husband was even starting to believe that the pain was pschosymatic, so no matter how the pain gets, at least i don't question my sanity. Except I don't know how I can start every single day for the rest of my life in so much pain i cry. But at least as the day progresses my pain lessons, until early evening anyway, then I start regressing back to the "morning" pain and usually am back in bed by 700 or so. I'll be taking everyone's advise on different cocktails of pain meds to my dr. and hopefully i'll find something that works. I'm so sorry you have to deal with both RA and sfn. There should be a "cap" on what a person has tolerate. I've been watched for RA for quite a few years now because I have Osetoarthraitis in both hands both feet and both knees, and OA normally only affects one or two joints, but so far i've not had any inflammation. Thand for you advise and comments. you have no idea what a relief it is to have contact with others that understand...actually i'm sure you do know how important it is, or you and the others wouldn't be here.

 
Old 04-01-2010, 11:07 AM   #5
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Re: recently dx small fiber neuropathy

thanks for you comments and suggestions, it's a great help to hear from people in the know. The dr at mayo didn't say it was progressive but I have read that it can be and from my own personal experience it sure seems to be. The neuro at mayo did say that they are currently researching the possibility that a virus could cause sfn, and I had a flu virus 20 years ago that turned the bottoms of my feet and my palms bright red and thick layers of skin peeled off and she said that could have been it. She also said that there isn't any treatment, if an underlying cause is not found, which it wasn't. So pain management and hoping for the best is my only plan right now. One of the things that worries me though is that the rhuematologist that i had been seeing diagnosed me with fibromyalgia, and from other people that i've talked to it seems there is an epidemic of fibromyalgia, but I'm thinking it's just a diagnosis epedemic. Instead of saying "I don't know" they dx people with fibromyalgia, and i know from personal experience that that is not a satisfying dx especially when your pain is "acute" and "extreme" not "generalized all over body pain" like fibromyalgia is supposed to be. The drs REALLY need to listen to their patients more. My rhuemy told me to "learn to live with it" , but now that I absolutely know what "it" is, it'll be easier. I just hope anyone who reads this and has severe pain in the hands or feet doesn't let the drs take the easy out dx of "psychosymatic causes" or "fibromyalgia". I also found out that there is a check in desk at mayo for people who don't have appointments, so if anyone is having problems getting a dx and can't get a referal to mayo, they can check in and wait for an opening but need to be prepared to be there for a couple of days or even a couple of weeks.

 
Old 04-01-2010, 11:13 PM   #6
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Re: recently dx small fiber neuropathy

Hi LoriAllen
My mom has RA very badly, has had both hips done,her wrists and one elbow and now has lost the feeling and the use of two of her fingers to this disease. You say that you have been watched for RA, did you have the blood tests? Sometimes the tests can be negative but all of your symptoms can point to RA, so you can be diagnosed with sero-negative RA. Perhaps this is worth checking into again.
I have a very bad time in the late afternoon and evening but the the nights are truly horrendous for me. So far the MS Contin 15 mg 2x/ day isn't helping at all. I am so disappointed. I mean, I thought that morphine was a very potent drug but it really works no better than the Tylenol 3's I have been on for a year. I go back to the pain clinic in May, but they only prescribed the T3's. It was my gp that put me on morphine, not sure what the pain dr will say, but I am taking my husband with me this time. He sees what I go through day and day out and is not happy with how I have been treated for the past 5 years since this started. He is supportive, but I have not told any other family members as I am sure they would not understand.
My hands are so clumsy too and this is why I asked the dr to change my medication for liquid morphine to pill form, as I had such trouble getting the syringe into the small bottle without upsetting the whole thing.
I also have a diagnosis of fibromyalgia, but took Lyrica for 8 months and all of the fibro symptoms like pain all over have disappeared. I was unhappy though, by the 30 weight gain it caused. So many medications, so many side effects.
I don't want to be unreasonably expecting a drastic reduction in the pain, just to get it down to a manageable level would be a miracle!
My best wishes as always!
Daisy

Last edited by daisymaegrl; 04-01-2010 at 11:13 PM. Reason: incorrect wording

 
Old 04-01-2010, 11:59 PM   #7
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gregw HB User
Re: recently dx small fiber neuropathy

Daisy, have you looked into a spinal cord stimulator? I have not as my pain is not to that stage, but something I would if it came to that.
Hoping for all the best!

 
Old 04-03-2010, 09:58 AM   #8
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Re: recently dx small fiber neuropathy

Hi Daisy!
About 15 years ago I had a positive rh factor but no symptoms, now it's the opposite but the fact that I have no inflammation and the OA I have is widespread but mild, so at least for now I agree that I don't have RA, but I have a feeling that sometime in the future some type of autoimmune disorder will rear its ugly head. Back in 2004 I had a DVT and multiple emboli and they never found what caused it and that was basically the end of my good health so I think it's connectedf somehow, and autoimmune disoders can cause dvts. I also thought that I might have lupus which would account for the dvt, the widespread OA and the pain, but so far all tests are neg for that too. That's why it was such a relief to finally get a dx at mayo. The drs were getting tired of me telling them how to do their job, needless to say, if they would have done their job i would have be dx with sfn years ago.

I'm glad you're taking your husband with you to your next appointment at the pain clinic. It seems us women try to hard to just grin and bear it but men will insist on getting the pain meds they need. My husband was adamant that I bug the drs for stronger pain meds. He's had a couple of back surgerys and it was so funny cuz whenever a nurse would ask him to rate his pain, he'd literally roll his eyes and say 10!! lol But then there's me..... I was admitted for an outpatient sugery to have an ovarian cyst removed and they ended up checking me in overnight. I checked myself out and went home and cooked supper. But chronic pain is different. It's not just a matter of toughing it out till it gets better, it ruins your life. Is the morphine you're on a extended release? I know extended release is supposedly so much better but I've had the opposite experience. I was on extended release oxycontins for a while. I felt constantly stoned but didn't get much pain relief. My husband got laid off at work for a while and we had to go without insurance, the oxycontins were horribly expensive so my dr put me on immediate release morphine. I'm currently on 30mg up to 4x per day and it works better than the oxycontins. But without being extended release, there are times when I don't have any morphine in my system which I actually prefer, that way I don't become quite as dependent and have a basis for reference, so I can tell that they're working. The 15mg that you're on isn't very much. I understand that drs and especially pain clinics try to discourage reliance on pain meds but that's absolutely ridiculous for people in chronic disabilitating pain. We are the exact people that SHOULD get the good pain meds. I think it's ironic how drs have no problem over prescribing anti depressants but then wont come off the pain meds. Even though antidepressants have serious side effects too. "Here take these so you don't complain about the fact I'm not going to treat your pain". Absolutely do NOT wait for them to recommend higher doses, because they'll take so long, you'll be suicidal from the horrible pain you're in and the second you say something to that affect, they'll have their big AHH HAA moment and they'll dose you to the gills with happy pills instead of treating the actual cause of your depression. Don't get me wrong I strongly believe that antidepressants have their place in treatment of chronic pain, but so do pain meds and it's up to you to insist upon it. You are NOT a junkie looking for a fix, and if the people at the pain clinic want you to meditate your way through this nightmare, then they aren't doing their job. Don't give up on the morphine before you try higher doses. I've found that taking higher doses in the mornings leads to taking much less during the rest of the day. Just be careful taking morphine or oxycontin before bed. I know that's when the worst of the pain is, but these drugs can upset your stomach and actually cause you to choke on your own vomit. That happened to our neighbor a few years ago and he died at the age of 48 because of the pain meds he was taking after a back surgery went bad. That's another reason I like the immediate release. I never take one within an hour of going to bed because as miserable as I am, I'd rather wake up than not. Hopefully you'll find something that gives you a break from the pain at the very least. Take care!

 
Old 09-12-2010, 03:34 PM   #9
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Re: recently dx small fiber neuropathy

HI
I am new to this board and will say sorry for the spelling and gramer inadvance.
I have had SFN for almost three years now and it took 5 neuroligist to come to it even Barrows did not help. I got to a neromusclur neuroligst who told me this.
Now a few things i have learned is small it harder to ditect and harder to cure then reg.
and so far all they can do is give you medication for the tremers and pain medication.
and there is a nerve stimlator that is put into your body that can help.
As for cause there can be many reasons it mostly comes from being diabetic but sence i pass that test and did some research two things that can also cause this is alcohol and cigerete abuse i did both and if you google SFN they have articals on this.
I have not been able to work in two years my feet swell so bad i cannot put on shoes maybe a hour. And i have a buldging disc in my back and arthertic hips which they think was caused by NFN.
But i did find a natural neuropathy medication and i take vicaden for the pain.

 
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