Hi, I'm new to this forum but certainly not new to small fiber neuropathy. I would like to first start by thanking all of you so much for all of your sharing because as my disease has been progressing with more and more symptoms, I've not gone to my neurologist, well for several reasons, 1 she's very dismissive of everything I tell her, so I've started to think that all my new symptoms were all in my imagination, when in fact as I read here, all of you share the same ones! And 2 she keeps telling me that there is nothing that she can do for me, and that I'm on the highest dose of Gabapentin that I can be on. When on my last EMG study she announced that my small fiber neuropathy had crossed over to a large fiber neuropathy, I asked her what that meant, she said just take more frequent rest periods through-out your day, and then she walked out of the room. What is that supposed to mean?? I asked my internist and he sent me to Duke University to be yet tortured again, with the understanding that I had developed MG and after two years they decided that that that's not what I had. So it's back to square one, but meanwhile I'm still looking the use of my arms and hands.
I can relate to just about everyone on this forum. I started about 11 years ago with toe pain on and off and a podiatrist diagnosed the problem as fallen arches. She said to purchase shoes with better arch support and enclosed backs since I only wore clogs. So I bought Dansko's and even though they were expensive I got used to wearing them. Eventually I saved up and bought another pair so that I could switch out shoes. What I liked best was the large toe box because it didn't rub on my toes. But as time progressed other problems cropped up. I always had low blood pressure, but now I was passing out on a fairly regular basis and getting carted off to the ER via ambulance to get filled up with IV fluids for a couple or more hours before they would release me. Each time I was admitted they would draw blood and each time my TSH was very high which meant a call to my MD and another switch in thyroid med levels. I have Hashimoto's Thyroiditis and the endocrinologist was basically keeping me hypothyroid. So I researched my disease and found another drug other than Synthroid and asked my internist to manage it for me. He agreed and I started to grow back some of the thinned out hair on the top of my head. All total I've had 38 admissions to the ER in the last 11 years for syncope. I've been lucky in the last five years or so because I've started to loose my eyesight prior to passing out which gives me a huge advantage. It gives me time to sit or lay down and prevent falling. So I haven't broken anything recently. The only problem is with all the times that I've passed out, I've also lost the capillary bed to my optic nerve and so now it looks like I've had long standing glaucoma that hasn't been treated. So my eye MD and internist got together and now I'm on a drug to keep my B/P elevated in an attempt to reduce or stop my syncopal episodes. So far it's helping fairly well, I feel one starting and I have the time to lay down so that I don't loose conscience.
I also have problems with my G.I. system where it almost comes to a complete halt. I was seeing a gastroenterologist first before my diagnosis of SFN because I was complaining that food was getting stuck in my esophagus. And sure enough on the upper G.I. series a tiny little pill that they gave me to swallow got stuck. So the radiologist asked me if I drank coffee. I said yes, but why?? He answered "because neither you or I can leave this room until that pill goes down and it doesn't look like that is going to be any time soon as you don't seem to have any peristaltic motion going on here. So we can use the hot coffee to melt the pill." Since that time fluids have tried to slip down my throat uninvited, and it's progressed to small solid materials as I'm eating. Needless to say, I don't eat out in public very often anymore. Choking in that extreme in terribly embarrassing.
Also, spring and summer used to be my all time favorite times of the year. Now I hate them because any rise in temperature relates to a rise in pain!! I'm on fire 24/7 as it is, but when the surrounding temperature increases, it just intensifies my pain!! I can't stand being dressed, I can't stand anything touching my feet, so I had to buy a foot cradle for my bed to get the sheets and in the winter months the comforter as well off my feet. The only problem is, it's hollow in the middle and my cat thinks it's a cat hammock and he jumps in it when I'm sleeping sometimes and then I'm awakened by the bedclothes touching my feet and legs.
I have a daughter with high functioning Asperger's who was always so picky about her clothes, and who always cut the labels out of her clothes because she couldn't stand them touching her. It used to drive me crazy because I never knew how to wash the clothes because the washing directions were always gone. Well now I have to say I have total empathy for her, because I can't stand half of the clothes in my closet touching me any more. I live in the mountains and I used to hike, I can't even feel the ground where my feet touch the ground let alone hike anymore. I used to drive long distances 16 hours straight threw, now I can barely hold on to the steering wheel for short trips to the supermarket. And that reminds me, I feel like a lizard. in the summer when I go out to airconditioned stores I get so cold I have to go outside to warm up. In the winter like now I'm freezing 24/7 and even the few warm days that we had when people were outside in shorts and tea shirts I was still dressed in fleece and I was shivering. I honestly thought I was loosing my mind about the hot flashes and chills. And I'm on medication to monitor my tachycardia. Plus I just started with another very annoying symptom that I didn't read on this forum and I wonder if anyone has had problems with it. I only know of another friend who has had issues with it for at least 5 years and she has peripheral neuropathy. It's skin inching. Sometimes it gets so intense I think that I'm going to rip my flesh off. my neuro gave another drug to calm it down, but that's about all it does.
Oh and another thing is loss of bowel and bladder function which seem to be transient not regular. So because I never know when I'm going to have an issue I can't leave the house without protection anymore.
Oh gee, I just remembered another symptom the brain fog, boy oh boy am I glad I found this forum. I thought for sure I was a goner and honestly between the neuropathy pain, and the pain from my mixed collagen vascular disease which is a lot of arthritis pain, some days I wonder what there is to live for. I'm allergic to most narcotic pain killers, because of asthma I don't handle NSIDS well, and quite frankly I like my liver too much to take too much Tylenol, and honestly for the amount of pain I'm in Tylenol is a joke!
I have an appointment next month with a new Neuro way out of this area because the neuros around here, and please forgive me, but quite frankly I think they all got their MD'S out of a Cracker Jack box. So I'm so hopeful that things will improve. I've taken some notes on the treatments that you folks have tried and I am going to bring them up at maybe not my first meeting, but surely my second.
What a blessing it is to live in a free county and to have access to others who share a common problem. God bless you all. It's taken me a whole day to write this due to finger mobility issues, but next time probably will be less. bye for now.