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Old 09-06-2009, 07:25 AM   #31
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Re: I have SFN-Do You?

Hello to Everybody,

How does stress effect your SFN? No change, increased symptoms, or less symptoms? I find that stress can add to a large increase in my symptoms. I have been under stress lately because of work and my SFN has increased in proportion.
However, and this is what makes SFN such a wonderful disease, I have had my hardest episodes of SFN on the weekends when I'm relaxed. Still busy running around on errands and chores that only get done on weekends. This is what confuses and complicates things.

Will

 
Old 09-08-2009, 08:07 PM   #32
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Re: I have SFN-Do You?

Everybody,

Hello, anybody out there?

Will

 
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Old 09-08-2009, 09:47 PM   #33
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Re: I have SFN-Do You?

Hi Will and all SFN'ers
Yes, I believe that stress really makes this worse. I get stressed thinking that there really has been no treatments or medications that have worked for me and that I will feel like this for the rest of my life. I am happy now that the cooler weather is here as mine seems so much worse in the heat. However I am still in search of footwear ( other than crocs) that won't cause me too much pain. The idea of having to wear boots brings me to tears.
I am seeing another new neurologist in October so I am hopeful she can suggest something more can be done. My blood sugars are under control and I am waiting for an MRI of my lumbar region. Other than that, it is just day to day, one step at a time.
I have better days and some not so good, as I am sure you all do.
Take care all! Daisy

 
Old 09-10-2009, 09:49 AM   #34
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Re: I have SFN-Do You?

Hello, I really honestly can't figure out what makes this condition worse or better, mine is so unpredictable. Daisy, I agree...it can get really overwhelming to think of this as a lifelong sentence, so I'm trying to live in the moment, and when the moments are really bad i know "this too shall pass" It does get exhausting and depressing though. I hate not knowing what exactly caused this, and it seems to be getting worse, in spite of mega vitamins, healthy diet, etc. Mine was labeled "Idiopathic" and it's bothersome to feel there is something lurking in my body causing all this. Sometimes I just have to tell my self "Stop" and not to worry about all the what if's...cause one of thoses what if's could be a total remission. Cheers to all. I enjoy hearing peoples triumphs and hurdles. Please share anything or treatments you all find helpful. On a side note...I have a beautiful new grandson Parker Ryan, who was born yesterday. There are things in my life to be thankful for! I need to remind myself of that often.

 
Old 09-10-2009, 07:56 PM   #35
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Re: I have SFN-Do You?

Hello Everybody,

Have you ever met another person face-to-face who has SFN and if so, what was it like? How does / would it feel to meet another sufferer of this disease? I have met another sufferer over the phone and it was alot like I was talking to myself. It was strange to hear another voice saying what I have said or thought. Though we had a lot of symptoms the same, there were differences that made their SFN their's and my SFN mine.
After the basic symptoms that alot of us seem to have, it seems to just go everywhere with each individual. What a great disease!
Everybody keep fighting against SFN!

Will

 
Old 09-11-2009, 05:23 AM   #36
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Re: I have SFN-Do You?

I have never met anyone with SFN, but who knows, it doesn't show visibly, so I may have. I know I carry on like everything is normal, but it is not. I have however talked on the phone with one person. It was strange and comforting at the same time. Maybe there should be a SFN convention...I know that's silly...I suppose it's a rather rare disease. Has any one ever heard of a Chiropractor Neurologist? I came across one and told her of my condition and she thought she may be able to help. I'll take anything, so I think I will give her a try.

 
Old 09-12-2009, 11:41 AM   #37
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Re: I have SFN-Do You?

Very interesting about the chiro-neurologist, I have wondered about the value of something like this myself. I didn't know if there was such a thing, please let us know how that goes for you.
I have only met a couple of others with SFN, like me they have overlapping conditions that complicate things. I think a convention would be great but how many of us could actually get there...lol. I just have this picture of a hobble-fest, tangle of canes, walkers, and chairs, everybody being tired and grouchy, Good times, good times...
Hang in there guys!
Barbara
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Old 09-12-2009, 09:01 PM   #38
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Re: I have SFN-Do You?

Hello Everybody...Listener's too,

What do you do / or have you done to make the symptoms better? Is it medications only, or change in diet,or sleeping habits. What does make your SFN better?
I can tell you what makes mine worse, cranberry juice. I will have a large increase in symptoms if I drink cranberry juice. Mix cold weather and a glass of Cranberry juice and you might as well put me in a box. A small box cause I"ll be inthe fetal position...
I know SFN effects people in different ways. How does it effect you?
There are several of us writing on this board. I know that there are many more who are reading these writings.Your every day trials with SFN are important to you. Won't you share them with us? You may have an idea that will help us all, or at the very least help somebody! Get off the sideline and talk to me! I need, I want your input and experiences! This is not a "soap opera" that we are telling our lives about. I'm a real person with a disease that has no definition other than it is perplexing and painfull!
It's easy to write and doesn't cost anything, but it could change somebodies life...maybe your's!

Keep up the fight!

Will

 
Old 09-13-2009, 06:45 AM   #39
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Re: I have SFN-Do You?

Hello to All

I have had the Dx. of SFN for about 9 months now, so I'm relatively new to it. When I first got this I was running from doctor to doctor, many who thought my symptoms were anxiety and stress. Through my persistance and having to go out of my network for insurance....and pay for it myself, I ended up at the Cleveland Clinic, which they dx. me through a skin biopsy. None of the drugs really help, Neurontin does a bit, but I refuse to take a high dose, cause it made me feel like Im in a fog. I take 600mg at night. Tried lots of other meds, but the side effects really bother me. I go to an accupuncturist, and that does help. I don't think it's going to cure it, but it helps my mental state, and somewhat with the pain. He is also coordinates my Vitamins, which is helpful. Again, I don't feel much improvement with the Vitamins, but I'm going to keep it up because I know it takes a long time for Nerve repair. Exercise helps, especially swimming in warm water. Cold definitley makes me worse, so I'm sort of dreading Winter. I take Epsom salt baths in the Winter, and I found that helpful. I will keep you posted on my Chiropractor Neurologist...I haven't made an appoint.yet. I went down the road of Chealation Therapy for a while, believe me you get all sorts of conflicting advice, and I just had to step back and evaluate what I was doing. I do try to eat more healthy. I tried the non Gluten, non dairy, non sugar diet for a while, even though my blood work didn't show celiac, but I didn't notice a thing, and it made me depressed to give up food I love. I haven't given up on seeking out different therapies and options, but I realized I was getting too much input and not much results. I try to keep active and positive. I don't know what others feel, but mine is widespread throughout my body. It mostly a burning skin sensation that radiates deeper. I also feel muscle weakness, and my left heel ankle area, which is my worse spot, aches, burns, and stabs at times. Sorry to carry on so long....one more thing that helps is prayer....I know I get to running around seeking out treatment here and there, but when I slow down and know that there is a God who loves me and cares for me and feel more at peace and know I can handle this burden. Okay enough said. I appreciate the support and peoples thoughts. Will, that's really strange about Cranberry juice. Take Care All!

 
Old 09-14-2009, 07:01 PM   #40
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Re: I have SFN-Do You?

Hello Everybody,

I wish I had a majic wish tonight because the SFN is hitting hard. There has been a little change in the season, I can feel it, and my SFN is beginning to run wild. I hope you are not bothered by such changes because if you are you're having a hard time tonight.
I'm trying not to take my backup medication for over the top pain. I use Tylenol#4 as my back up and I don't want it to become useless because it has proven to be the only thing to knock the pain down. It doesn't remove the pain, only takes the edge off it. I would hate to lose this meds ability.
As with all the medications I'm on, I hope they continue to help me. I don't want them to become useless.
Keep up the fight against SFN everybody. I say this not as a closing statement, but as the truth to keep us all working for a cure one day! I don't want to die still looking for a cure to SFN,

Will

 
Old 09-15-2009, 06:08 AM   #41
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Re: I have SFN-Do You?

Hello, My pain was awful last night too....Must be the weather change...I really get tired of this whole thing!

 
Old 09-15-2009, 05:42 PM   #42
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Re: I have SFN-Do You?

Hello to All,

Question,,,has anyone heard or tried the Marshall Protocol?Trevor Marshall is a scientiest who had Sarcoidosis and he discovered that Vit D and may some how contribute to alot of illnesses. I'm seriously researching it. You can google it. Hey , when doctors can't tell you why...then why not try...the protocol seems a challenge, but not harmful, I would love to know if any of our listners/writers have heard or tried this. I know when you are sick you can fall prey to false hope...but this sounds promising. Please share any input...we are all looking for relief and answers.

 
Old 09-16-2009, 11:23 AM   #43
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Re: I have SFN-Do You?

I was finally diagnosed with small fiber polyneuropathy. My doctor is Dr. Anne Oaklander at MGH in Boston. After I had my baby 2yo ago, three weeks post-partum I found I could not walk, had all the symptoms everyone has listed, have seen over 15 different specialists to seek a diagnosis, was rejected by the insurance company since they didn't have an official diagnosis, etc. ad nauseum. My current meds are: ativan, citalopram, Levoxthryocine, lidocaine patches for the feet, tylenol w/codeine (I've since ceased this drug since it was making me really sick), and just started neurontin/gabapentin in the last month. I am also seeing an acupuncturist and an herbalist to help me deal with the chronic pain (5-6 in general on the pain scale) and flare-ups (8-10+). It mostly affects my hands and feet, and basically, has changed my lifestyle. Occassionally, I have woken up in the middle of the night and cannot move my curled up fingers. (sigh)

Currently, it is idiopathic but am searching for a possible cause. I am assuming that SFN is the same as SFPN? Has anyone tried Anodyne Therapy? Anyway, glad to have found this board.

Last edited by rr123; 09-16-2009 at 02:06 PM.

 
Old 09-17-2009, 09:59 AM   #44
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Re: I have SFN-Do You?

Hi Will and All - I have not posted in a while because I have been feeling so darned good that I have been too busy. I do follow the board regularly though, and I almost feel guilty that my SFN is so under control right now when others are experiencing so much pain and discomfort. Will, I think about you often and really appreciate you starting this board. I am still on Gabapentin 100 mg 4 times a day and Cymbalta 60 mg once a day. I feel so fortunate to have found relief with my first try on meds as many people are no where near this fortunate. Hope it keeps on working for me. Loving good wishes to all and hoping for similar relief for all. - Ruby

 
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Old 09-17-2009, 07:13 PM   #45
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Re: I have SFN-Do You?

Hello to All,

Ruby it's good to hear from you and very glad you are doing so well. I hope this condition continues with you.
I see in some of the writings that some of you are taking only one medication to control SFN. I have experienced that it takes a combination of medications to have some control of your symptoms. I also have seen that the combination that's right for me will probably not be right for you. My Neurologist and I tried several different medications before settling on the three medications I take daily just for the SFN.
Not being a doctor, please don't take my thoughts as what you need to be doing. It's just an observation that I have seen.
Well, everybody keep up the fight against SFN...I will!

Will

 
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