Thanks for the reply Dianne. We will certainly be looking into the statin drugs as a possible culprit, but I have a question for both you and anyone else who could offer some advice. My wife is horribly health anxious, always has been. I can't even count the number of illnesses/diseases she's self-diagnosed. My question is if this is a common thread of people with SFN that is considered idiopathic. I have read where depression/anxiety can cause some very serious physical symptoms including many neurological. I get the sense from her Doc's that due to a lack of any other significant findings that this is a diagnosis of convenience even though she has quite a few symptoms that they say are not commonly seen in SFN. She has recently been coping with the fact that her Mother is dying due to Metastatic disease stemming from breast cancer (last 7 months) and it seems that when she has any sort of stress in her life, there are very real physical ailments that come along with it. She gets very angry with me when I even bring this up as a possible contributor to her condition as she thinks that I'm implying she's crazy, but it's just such a coincidence that so many of the symptoms she has are commonly seen in patients with severe depression/anxiety disorders. I hope no offense is taken in this by anyone, but I just have the hardest time believing that anything can be truly idiopathic. There has to be an underlying cause in my eyes. Could just be my ignorance on the subject.
One other thing to mention too is that this is the 4th episode in the last 3 years. This one's by far the worst, but all seem to happen in the Fall months and have lasted anywhere from 2-7 months. Is this something that's seen by anyone else?
I thank anyone in advance for their comment. I'm just so afraid for her as she's not dealing with this very well at all and is starting to convince herself that there could be other things going on behind the scenes that just haven't presented (i.e. amyloidosis, LFN)
Been very busy but haven't forgotten the board.
As a reply to help4mywife, I can truly say that my SFN is idiopathic. It also gets amazingly worse in the cold weather. It's much better in the hot weather. I'm sure that any diagnosis could come from the conditions that help4mywife has put forth. But if you have read most of the writings in this thread, you will find that SFN is very hard to get a diagnosis for. It doesn't meet most prescribed definitions of diseases. It effects us in different ways, but all of the ways hurt. Pain is always with those who have SFN. I'm sorry your wife has or maybe has SFN. In my research I have also found that females have it worse than males for the most part. I can't explain the reason for this, just it is as it seems. Stress is also a big part of my SFN. The more stress I have, the more SFN makes it's presence known. Good luck to both of you.
Well. Got to go. Everybody keep fighting SFN, never quit!
Will, glad to hear from you, but wish you were having a better time of it. As always, I send many caring thoughts your way.
Help4mywife, I was wondering what tests your wife has had to determine that she has SFN? Has she had a skin biopsy to definitely determine she has SFN? SFN doesn't show up on nerve conduction tests so often baffles neurologists. Without a skin biopsy, which isn't always conclusive, a doctor is giving an SFN diagnosis strictly based on symptoms. Actually my neuro didn't do a skin biopsy because my symptoms are so classic SFN and he ruled out any other conditions, including amyloidosis. You say your wife has symptoms that aren't commonly seen in SFN. Even though she has been to Mayo, that doesn't mean the doctors there couldn't have missed something. Or on the other hand, perhaps the other symptoms are anxiety/depression related, but that doesn't mean she doesn't have SFN too.
Regarding amyloidosis, she can ask for the test to put her mind at ease. My doctor just automatically tested for this as it was a significant possibility with SFN--the test was negative.
Believe me, anyone with SFN needs all the support they can get to ease their mind. Actually my neuro thought I was a whacko in the beginning because he sees SFN so rarely. It was very hard not to be taken seriously when I was scared silly. I can fully understand why your wife would react so strongly to any suggestion that her symptoms were the result of anxiety/depression.
As to ideopathic, that just means medical science hasn't discovered the cause. There are many cases, like mine, where no cause can be found, but we sure do have SFN. I turned 65 two months before I noticed symptoms and went to the doctor to finally be diagnosed with SFN. At 65 I had thought I was the healthiest person on the planet--no previous serious illnesses, medical conditions, anxiety or depression--then the SFN came out of nowhere.
Is your wife taking any meds for her symptoms? Although many people, like Will, have only moderate success with pain control, others like myself have been luckier and found the right combo of drugs so that we are pretty much pain free most of the time. At least for now my meds (Cymbalta and Gabapentin) work well, but that, like other things with SFN, can also change.
Good luck to you and your wife and hugs to all with SFN out there. - Ruby
DearHelp4wife, I definitley have SFN...a skin biopsy confirmed it. An lots of diseases are Idiopathic...like Ruby said...that means unknown cause. That's why it's imporatnt to r/o all the known causes...and with medical advances, maybe we all will know our own cause. I was under a lot of stress when I developed this, but I guess whos not these days? It does make you anxious when you know something is wrong and doctors just scratch their heads. You have to research yourself, so it does make you a bit paranoid ...like you are a ticking time bomb waiting for a cause to show up. I was 47, healthy on no meds for anything....except a cream for Basal Cell Carcinoma....which by the way I think may have triggered this....Chemo Therapy can cause Neuropathy....but that's another story. Which came first depression /anxiety or SFN....which not everyove who has this gets that too.....but mine right now is a vicious cycle, but let me tell you, this is a very uncomfortable and painful condition....but it's not usually outwardly visible. I still can do most activities, but I'm always uncomfortable (pain wise) doing them....it's tough. I'm glad you are taking the time to help your wife. Encourage your wife to get a good doctor she likes, tests for all underlying causes....then try to stay off the internet and scaring herself with doom.We all have the hope of remission....Merry Christmas.
hello everyone! Just checking in, I have been keeping up with everybodies posts but have not had the energy to post lately. I'm doing ok, the deep freeze of weather has just had me down. Hi to all and hang in there.
Fibro,neuropathy,TN, failed acdf 3 level, stenosis of the spine, cvid
Barbara, I am sorry that you aren't feeling too perky. I am in the same boat as you. We have had a stretch of cold temperatures here too which is unusual on our west coast and I am achy all over. I am not feeling well at all, but I am sure mine is related in part to this busy season we are in. I want to bury my head under the covers when I think of all that I want to do to get ready for Christmas. I have cut down on much of the cooking and baking and shopping that I have done in the past, as I don't have very much stamina or strength. And the worst part is that I feel so guilty for not wanting to make more of a fuss with decorating and present buying. I know that this is all of my own making, No one in my family is making me feel badly, it's just me mourning the happy energetic person I used to be.
I hope that you will feel better soon and I am so happy that you check in with all of us here as we care about you. This can be a bad time of year as we all tend to over extend ourselves. Rest when you can, and hopefully you will enjoy some holiday cheer with family and friends!
As I live where we rarely get snow or cold temperatures I have nothing but respect for those of you that battle temperatures in the minus and SFN.
Best wishes as always,
Let's make this the last entry on this thread. The administrator will lock this thread because we have gone so far over about (87) replies. I will start another tonight, so there will be no lag in places to write and read.
To all, fight SFN with all your strength and never,never,never ever quit!
What I hate about sfn is the cocktail of drugs i have to take. cymbalta neurontine,
tramadol in the highest doses - i feel like a zombie have no emotions and have lost
my sexual drive - what's more my wife is divorcing me and i'm left alone.
SFN stands for Small Fiber Neuropathy. Some people have it in just certain locations or body wide.
There are more writings about SFN in past threads and more up to date threads. This thread is an old one. You can go back several pages and find quite a bit of information.
I was looking for this thread. I have started to understand, in this last year, what is going on with feet on fire with stabbing shocks. Now whole foot.
Have docs in Boston. Slow progress.
Got EMG recently and SFN dx.
Weird how toes and bottoms of feet became numb after EMG. Now more balance trouble.
Already been on Neurotion for @ 20 years for RLeg.
Take 600 4X day, try to keep 6 hrs between.
Taking 5,000 mug Methyl B12. Think it was helping.
Guess I am in for a journey! :/
Legs, hands and face now joining in.
That's my story and I am sticking to it! :]
Thanking all for this forum!
Ruby is right, we did learn a lot as a group sharing what we knew about neuropathy. I am so sorry you are suffering. Not much seems to have been done in the way of research about this debilitating problem. At least not that I am aware of!
We all just seem to cope as best we can.
I miss the group we had here too. Sometimes it just gets too hard to think about how our lives have changed since neuropathy came to live with us.
I have had it for 6 years now. Mine is auto immune, related to my Rheumatoid arthritis so I am told.
Best wishes to you!
The Following User Says Thank You to daisymaegrl For This Useful Post: Capewind (08-26-2011)