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Old 11-03-2008, 08:19 PM   #1
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will54 HB User
Small Fiber Neuropathy

Hello, I'm new to the message board but not to SFN. I've had this since December of 2006. Mine is idiopathic and came on after shoulder surgery. My orthopedic prescribed Lyrica for some tingling in my hand after surgery and said it would also help me sleep. The Lyrica brought on my symptoms and strong I might add. My Neurologist says I have the symptoms of somebody who has had diabetes for over 10 years. I do not have that problem as all test have proven and do not have loss of feelings. I do have strong pains, stabbings, burnings, and sensativities body wide. It even bothers my teeth. I take Trileptol and Mirapex with some help, but as my neurologist has stated, it is getting worse. I have my days, then worse days, and then even worse days. Stress is definately a factor in how I feel and have been having that lately with the job.
I'm not complaining, only looking for somebody with what I have who can relate.
Thanks for listening.

 
Old 11-05-2008, 11:06 AM   #2
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Re: Small Fiber Neuropathy

I'm drawn to your post, as I had rotator cuff surgery last November. In the past two months, I've developed nerve pain in my lower right abdomen and lower right ribs. I'm currently awaiting an appointment with a neurologist and taking 75 mgs. of Lyrica daily. Although the medication is taking the edge off the pain, it isn't keeping me comfortable for long. I wish you the best of luck!

 
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Old 11-05-2008, 03:27 PM   #3
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Re: Small Fiber Neuropathy

hi Will. I have had SFN since January of 2006 but was officially dx through a skin biopsy in Dec. of 2006. You mentioned that your neuropathy followed a surgery and mine came 3 months following removal of my appendix. I haven't thought about the anesthesia as a possible cause, but that is intresting. It has been determined that mine is the result of organic solvent chemical exposure. I have all of your symptoms plus continuous numbness in my hands to elbows,feet to knees, and most of face. I continue to work full time but each day certainly brings on challenges. Currently, I take 400mg of Lyrica, 150mg of trileptal, and 200mg of nortriptyline. And when that is not enough, like on a day like today, I take darvacet prn. I take vitamine b12 shots and that has helped my energy level. It is hard to explain to just anybody what comes with this disease. And if you are like me, sometimes it is just not worth the effort.
allie

 
Old 11-05-2008, 07:54 PM   #4
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Re: Small Fiber Neuropathy

Hello to janajb2 and anwise67. Thank you for your writings and I wish you both the best.
I notice that you both indicate surgery and then the neuropathy and that you both take Lyrica. It was on my second rotator cuff surgery on the right shoulder that I was prescribed Lyrica. I will not take Lyrica again as I feel it is what brought this SFN on in the first place. Have either of you noticed a change in intensity with the change in the seasons? I seem to do worse in the cooler months than in the warmer months. As for my medications, I take 750mg (2) daily of Trileptal and (1).25mg in the morning and (3).25mg at night of Mirapex. When the SFN and my shoulders (yes plural) get too much I take a Tylenol #4, which takes the edge off only. I refuse to let SFN beat me, it may slow me down and hurt me, but will not defeat me.
Hang in there and best of luck.
Will

 
Old 11-06-2008, 06:07 AM   #5
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Re: Small Fiber Neuropathy

Will,
I do get worse with the seasonal changes. I was doing very well until we had our first cold snap two weeks ago. Since then we've had days in the 70's and I have enjoyed those very much. I love your attidude. Once I found out that I did have SFN I refused to let this disease ruin my life. I have 3 kids who love to play sports and want me there; so I pack cold packs and hot hands depending on the temp. and I make it to most. I think that you either accept this and move on or it brings you down. I know that the lyrica can intesify some people's symptoms but I was in so much pain and it has really relieved that part for me. My problem has been that my body gets acclimated to the doseage and we have to increase them. Since I cannot do exercise that puts pressure on my feet, I purchased a recumbant bike and try to exercise at least 3 times a week for 30-45 minutes. Do you get fatigued easily?Do you have episodes where your feet or hands turn red and feel like they are on fire?
Allie

 
Old 11-06-2008, 11:14 AM   #6
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Re: Small Fiber Neuropathy

Hi Will. I can't honestly say yet if weather affects me worse, as we're just coming into our winter season and the first weather change for me. I can, however tell you that when my skin gets goosebumps, it just about sends me through the roof! So far, I've yet to convince a physician that this isn't all in my head, but I'm a fighter and I will not give up. This is legitimate pain with legitimate symptoms, and I'll keep pushing til I find what gives me relief. I'm just hoping it isn't a rubber room. lol Good luck Will and Ally, and please keep posting so we can assist each other, if only emotionally.

Jana

 
Old 11-06-2008, 08:02 PM   #7
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Re: Small Fiber Neuropathy

Hello, Allie and Jana,
Isn't it amazing how hard it is trying to explain our problem to our doctors much less to anyone else. I fortunately have a neurologist that understands and treats this condition. He does lose me in some of his talks as he begins to go over my head and I try to bring him back to my understanding of the process of SFN. On the medications, he says that I can take an extra Mirapex on days that are bad. I've tried this numerous times in the morning but it leaves me "foggy" and I don't like the feeling. Do you have problems when you go to wad up a piece of paper or foil? I can't, I might as well try to grab a ball of spikes or needles. Then there is the needle that out of nowhere decides to impale itself in a finger, toe, foot, knee, etc., or that crawling bug or worm or something under your skin...Yes, now explain that to somebody who doesn't understand. Allie I haven't had the redness in hands and feet, but the fire burns strong alot, like right now. Standing, sitting, walking, or laying down makes no difference to this stuff. Well, enough, take care.

 
Old 11-07-2008, 04:30 AM   #8
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Re: Small Fiber Neuropathy

Will, I'm still awaiting a referral to a neurologist, and have had every internal test done. Because I was so sick in June of 2008, (bacterial infection) everything seems to be referred to my gall bladder. I've had 3 ERCP's, had a stent inserted and later removed and all that shows is a slightly enlarged gall bladder and sludge. I have to see a surgeon next week to determine if the gall bladder should come out. In my personal opinion, I think this is muscular in my case, as I have seen a chirpractor and he has told me that while in hospital for two weeks, I twisted my rib cage. I will, however, wait until after I see this surgeon to determine if I should consult a massage therapist. The rib pain is extremely painful, but the sensitivity to my skin on my abdomen is worse. I'll keep you posted on my findings, and in the meantime, I sincerely hope you find some relief from your pain.
Have a nice weekend.

Jana

 
Old 11-07-2008, 06:05 AM   #9
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Re: Small Fiber Neuropathy

Jana,
You are so right about pushing until you get an answer. SFN does not show up on emg's. I had two done and I just felt like the neurologists did not believe me. He never mentioned SFN, but I found it on the internet and realized that the article was describing me. I even mentioned it to him at my next appt.(he took the wait and see approach with my health, a visit every six months) and he still wouldn't talk about the skin biopsy and would not recommend I do it. Then he turned right around and said, "if it is SFN, I would not treat you any differently". I tried to explain to him that if I had an answer then I could quit being terrified of the unknown and start accepting my condition. Needless to say, I found a young neurologist 5 hours from my home who did believe me and perform the biopsy on my first visit. He called me a week later with the results. He said, "you don't have a brain tumor or some other fatal diseases; However you have a very painful condition that you will have for life." A bitter-sweet moment. That was almost a year ago and i am healing emotionally; my lawsuit has been settled so that stress is gone; and I try to have a positive attitude. I am enjoying talking with people who understand. Will, I am very sensitive to things touching my skin. I can't stand certain fabrics like the microfiber blankets. Allie

 
Old 11-08-2008, 06:47 AM   #10
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will54 HB User
Re: Small Fiber Neuropathy

Hello Allie and Jana,
Jana keep telling your doctors that this is real and not in your head. I've just been fortunate to have an orthopedic who realized I needed to see a neurologist and he treated SFN. Last night my wife and I decided to switch our insurance plan, so I don't know yet if I will have to change doctors. I will if needed because the change in plan is just to good to pass on. Just not looking forward to explaining everything all over again to some one new. It might work out for the better, so I will keep that mindset.
Well, both of you have a great weekend!

 
Old 11-08-2008, 07:19 AM   #11
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Re: Small Fiber Neuropathy

Allie, having a positive attitude makes all the difference in the world. What doctors don't understand is that the fear of the unknown can be debilitating.
I've asked so many questions, and the looks I get are dumbfounding...like I have two heads! While in hospital, I was receiving Heparin shots in my abdomen. Could this have caused this abdominal nerve pain? Is it possible that anaesthetic could do this? All I get is funny looks when I ask these questions, but I will keep on asking. After all, this is my body and I will keep pushing until I get answers. Will, this is where being a Canadian has its advantages. Most of our health care is covered by OHIP (Ontario Health Insurance Plan) and my husband also has an excellent benefit package, so I might as well take advantage of it! lol
I'll write again after I see this surgeon on Tuesday.
Happy thoughts to you both.
Jana

 
Old 11-09-2008, 06:22 PM   #12
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will54 HB User
Re: Small Fiber Neuropathy

Allie, Jana
When the SFN is real strong, does it feel like your nervous or shaking on the inside? Has been a tough day, SFN has been strong all day. Arms,legs, hands and feet have been awake and alive. Couldn't sit, so stood all day. Hope I get some rest, I'm tired. Sorry to complain.
Hope you both have a good week!

 
Old 11-10-2008, 04:06 AM   #13
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Re: Small Fiber Neuropathy

Hello to all. When my SFN first started I would have what you describe as internal shaking. These would mainly happen at night and I was tested for seizures. I had no seizure activity on the EMG. Have either of you had the skin biopsy? Will, is your SFN stable or progressive? Have you had the 4 hour glucose tolerance test? The past two weeks have brought on challenges for me as well. Hope you got some rest last night. I laid around most of Sat. and alot on Sun. trying to help the fatigue. Talk to you soon.

 
Old 11-10-2008, 07:23 PM   #14
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will54 HB User
Re: Small Fiber Neuropathy

Allie, Jana

Jana, good luck to you tomorrow at the doctor, I wish you well.
Allie, my condition is progressive and I'm guaranteed to get worse by my neurologist. Time to make an appointment and see him again. My medication prescriptions are running out. Maybe we'll try something new, I could use a change even if only for awhile.
Well, best wishes and luck to all.
Will

 
Old 11-12-2008, 05:19 PM   #15
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Re: Small Fiber Neuropathy

Allie and Jana
Ladies I hope all is well with you both. I haven't seen your posts and just miss the talks.

Will

 
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