i dont know if whats going on is from small fiber or something else. please read my background and help me figure out what to ask. he is very detailed and i have to be very short and specific.
my back ground .10 years ago i was tested and told i had small fiber neuropathy. background – i had major burning, pain , tingling and insomnia in 1990 and 97. both lasted 1-2years and finally subsided. my main drugs have been immipramine or immipramine and cymbalta. i had a car accident in 2003 and had back issues (herniations in cervical, thoracic )along with pain in 2003 and again in 2009 which is when i was told i had sfn but could not find the cause.. i had been doing ok until early 2018. i started getting chest pain in march 2018 and also some limited strange tingling on my right arm and leg . the chest pains went away after about 6 months. i saw a cardiologist who took extensive tests and ruled out my heart.. i didnt really feel the tingling much until july of 20018 right after i got back from africa. as the months went on i also started getting a cloudiness in my head that comes and goes. i get a dryness/feeling pulling of skin/muscles. my legs started to really tingle constantly in november 2018 and not long after my arms started feeling that also. ny feet started to feel some numbness(not totally numb but feels different(need help in describing better) i also then noticed that my teeth started chattering slighlty (by slighlty i mean i feel it but hard to see but i feel like im constantly chopping) the other thing i started getting is tinnitus.
im basically they cant find anything so it must be sfn. (i recently also went to ms dr who told me its not m/s)
what questions or tests can i ask the dr? does anyone else with sfn get the head cloudiness, tinnitus, teeth chattering?
thank you all in advance
@johnbishop i mean foggy thinking, not confusion
I know exactly how you feel about trying to come to terms with the fact that peripheral neuropathy may never go away. It is a daily struggle and never far from my mind. I was diagnosed with idiopathic PN about 4 months ago, and my days are filled with acupuncture, massages, physical therapy and now a chiropractor. Gabapentin helps at night, but other than that and CBD oil I have not taken any other medication. Actually, I am concerned that my PN was caused by my long usage of statins for cholesterol. Has anyone else related their PN to statins.
Liked by Chris Trout, Volunteer Mentor
ruth,
how long have you been on gabapentin. any side effects? im am scared of that and lyrica but realize that may be my next step.
Liked by Chris Trout, Volunteer Mentor
@albiet I've had ten therapists over the past 12 years. Most of them have been doing their one year internship and then moved to where they make more money than they can earn at clinics here. I'm between therapists right now. There are probably good therapists within an hour from my home, but none that accept Medicare.
Jim
I've been on Gabapentin for about 6 weeks. My doctor stepped me up every week – 100 mg; 200 mg; 300 mg. At this early stage, 300 mg once a day has relieved my pain. I still have some stiffness in my feet and the popping popcorn sensation in my legs, but the burning and other pain is gone. My side effects were a bit unusual as it caused me insomnia when I took it at night, but if I took it in the morning I felt totally zoned out. Trial and error has resulted in a 6 PM dose that enabled me to sleep with a sleeping aid. Tonight I start trying to sleep without that aid. I also remember feeling a sensation in some of my muscles like a pulling, tugging, or tightening that was strange. It didn't hurt and wasn't so big that it was observable, but I could feel it. That sensation is gone now.
Gabapentin gets a lot of bad play, but I didn't hesitate to give it a try because I was tired of the pain. I think for every horror story there are a thousand success stories that we don't hear about because no one is posting them on the internet.
Liked by Jim, Volunteer Mentor, Kanaaz Pereira, Connect Moderator, Chris Trout, Volunteer Mentor, rwinney
I'v been on 200 mgs of gabapentin for three weeks. Before that I was afraid to take it but finally gave up trying to tough it out. Now I take it only take it at night. I still have break through burning at night so it hasn't relieved that, but , for the most part, it helps me to sleep. I don't know about lyrica as I haven't tried it, but probably will down the line.
Yes – the sleep issues have been resolved. I think it was a coffee issue, not a Gabapentin issue! I still take my pill at 6 PM, but now have my last cup of coffee after dinner (instead of well into the evening). By 11:30 I am ready for bed.
I am pretty sure that I will be the one who determines my dosage, especially at this low level – and yes – it's all about controlling the pain. He seemed surprised that 300 mg was working – so I suspect most people need more. We will revisit my dosage again in mid-December. Since he is leaving (rats!) and I may be without a doctor for a period of time, I will ask him to prescribe 400 or 500 mg daily, and allow me to determine what I need. I think the highest possible dosage is something like 3000 mg/day – so I am still at a very low level.
How are you finding 200 mg? Are you having side effects?
@iceblue im seeing the neuro tomorrow to speak with him as I haven’t started neurotin or lyrica as I’m nervous about side effects. I’m on imipramine currently and tried mirtazapane 7.5 for the last 30 days but go off it tonight.
Sleeping has become a big issue for me and was hoping that would help. It didn’t and my tinnitus was getting worse so needed to come off that and see how tinnitus is before I try anything else
Liked by iceblue
Lyrica was the only medication that helped my sfpn pain. Unfortunately I had serious side effects that put me in the hospital for a few days. Bummed because it was relieving the pain. My pain specialist prescribed Imipramine two months ago and it has really helped. I hope it will work long term.
I've tried so many meds, I wish I had kept track.
I'm sure you've figured out that there is a very long list of medications that people take. I hope you don't have to do a lot of trial and error.
Jim
Liked by Lisa Lucier
@rwinney
Wow, that's an awesome goal! Keep up the hard work and I'm thinking you truly deserve your 2nd retirement. 👍🏼
Liked by John, Volunteer Mentor, Chris Trout, Volunteer Mentor