Help asking doctor if this is small fiber neuropathy or something else

Posted by albiet @albiet, Nov 4, 2019
  1. HELP please. im going to a neurologist that deals specifically with neuropathy. i had seen him in march and he took a bunch of blood work and nothing came up. he wanted to put me on either neurontin or lyrica and i said i’d prefer not at that time.

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

Hi Rachel – Good question. The 525 has been in the works for awhile. They are working with a pharmacy company on putting it together and getting it approved. Not sure of all the details. I am looking forward to taking fewer pills and the cost should be about the same.

Aw…thanks for the kind words on the photo Rachel. Our marketing manager made me come into the office to take a current photo which I'm guessing is for a newsletter to let customers know that I am retiring at the end of the year. Fortunate to have had 2 careers and retiring for the second time after 21 years with this company at the ripe young age of 76. I am still working on the weight loss as I need to get down another 20 lbs or so to get to the weight I was at when my wife and I were married in 1966.

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Wow, that's an awesome goal! Keep up the hard work and I'm thinking you truly deserve your 2nd retirement. 👍🏼

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@jimhd

@albiet

I've been taking 1mg of Klonopin for nearly 13 years, which, I suppose, is a low dose than many take. I take enough other meds for depression, tachycardia, arthritis and neuropathy that it would be a challenge to figure out which was doing what.

Before my MRI yesterday I took Klonopin and a muscle relaxer, then they gave me a miniscule dose of Xanax. It might have helped me relax but it didn't alter my thinking.

The one thing I think about is the cumulative effects of meds. Many of them warn about cns suppression, and several warn of the possibility of serotonin syndrome. So, I keep a close eye on the signs of those things.

Jim

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@jimhd thank you – what is cns suppression?.

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@johnbishop

@albiet, by mental issues do you mean foggy thinking or confusion? That may be a side effect of the medication you are taking. I only have numbness with my PN so do not take any medications but I have had times where I was pretty down mentally due to the neuropathy. What has helped me is just trying to take things one day at a time and focus on things that make me happy – not that I'm always able to do that but I make an attempt.

There is a book by Norman Doidge, M.D. – "The Brain's Way of Healing" that talks about a way to train the brain (my words) to help reduce or remove chronic pain. I started reading it but never finished and gave it to a friend. The chapters I did read made a lot of sense. He has a website with some frequently asked questions that may be helpful – http://www.normandoidge.com/?page_id=1052

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@johnbishop i mean foggy thinking, not confusion

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@jeffrapp

It certainly is hard not to obsess about this. Not only is it painful, it's also unpredictable. Plus, it's common to worry about what the future will bring.
There are a number of medications, primarily anti-depressants, that are commonly prescribed for PN. They not only address issues of anxiety and depression, but also seem to reduce the pain independently of their psychological effects. It may take some experimenting to find the right one. Your PCP can prescribe these, although seeing a psychiatrist or therapist certainly wouldn't be a bad idea.
Don't try to direct your own treatment too much. Let your PCP be the one to decide who to go to next.
Staying active and socially engaged is also helpful, as are techniques such as meditation. Many are discussed on this forum.
Be as positive as you can be. Worrying and questioning why this happened to you will never be helpful. With the passage of time, you will likely get better at dealing with it.

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@jeffrapp i believe strongly in antidressenants for pain. i have been on impramin for years adn was on cymblat for a while.
my problems includ that my psychiatrist retired and i have no confidence in my pcp.

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@artscaping

@albiet, @jeffrapp, @johnbishop, @rwinney Good evening group…..Oh my goodness, we all struggle. The small task of responding to your inquiry is a building block for my positive emotional condition and level of acceptance of my physical condition. Discover others to help, find a way to contribute. Acknowledge and accept the incurability of neuropathy. And then build upon that foundation with a focus on quality of life.

I practice mindful meditation, daily yoga and will do anything BUT miss my MFR (myofascial release) treatment every week. Knowing that you are loved is so enriching. I am going to jump out to the end of the diving board here and attach a photo of Amelia (age – 3 1/2 months) and me, (age 77 and 8 months). Notice how important a month or even a 1/2 month is when we begin this journey and how little it means at this end. Find a bit of joy every day. Chris

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@albiet, @jeffrapp, @johnbishop, @rwinney thank you so much for including that photo. i know i need to get my head into the fact this may never go away. but its so so hard.

Liked by rwinney

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@albiet

@albiet, @jeffrapp, @johnbishop, @rwinney thank you so much for including that photo. i know i need to get my head into the fact this may never go away. but its so so hard.

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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.

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@ruthofanne

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.

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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.

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@albiet

@jimhd thank you – what is cns suppression?.

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@albiet cns is central nervous system. Many meds indicate the possible side effect on breathing, that a medication could cause you to stop breathing because the med relaxes your cns. Not a very good explanation, I'm afraid. You could Google it.

Jim

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@albiet

@jeffrapp i believe strongly in antidressenants for pain. i have been on impramin for years adn was on cymblat for a while.
my problems includ that my psychiatrist retired and i have no confidence in my pcp.

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@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

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@albiet

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.

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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.

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@iceblue

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.

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@iceblue thank you for your reply on gabapentin. have you been able to figure out the sleep pattern? has the dr mentioned how he determines whether or not to step up the usage? is it based on your pain ?

Liked by iceblue

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@albiet

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.

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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.

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@albiet

@iceblue thank you for your reply on gabapentin. have you been able to figure out the sleep pattern? has the dr mentioned how he determines whether or not to step up the usage? is it based on your pain ?

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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?

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@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

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@ruthofanne

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.

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@ruthofanne

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

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