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

@jimhd do you or anyone here ever worry about trying a medication because of potential side effects or the issues with coming off a medicine. I used to take anything because of the pain but over the last year I have worried more about that and am having trouble overcoming that.

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@albiet

@jimhd do you or anyone here ever worry about trying a medication because of potential side effects or the issues with coming off a medicine. I used to take anything because of the pain but over the last year I have worried more about that and am having trouble overcoming that.

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@albiet

I take 45mg of Mirtazapine as an add on for depression.

Yes, I read the paperwork that comes with a medication every time I start a new one, and often I read the side effects and interactions and warnings. I tend to be somewhat compulsive about being informed. I look for information online all the time. So, I pay attention to what is said about my meds, and all of that is in the back of my mind all the time. I watch for any side effect and warnings in my behavior, in my mind and in my body. I have a standing appointment with my pcp to do a medication check. He's pretty aware of my meds and the reasons for taking them.

Jim

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@jimhd

@albiet

I take 45mg of Mirtazapine as an add on for depression.

Yes, I read the paperwork that comes with a medication every time I start a new one, and often I read the side effects and interactions and warnings. I tend to be somewhat compulsive about being informed. I look for information online all the time. So, I pay attention to what is said about my meds, and all of that is in the back of my mind all the time. I watch for any side effect and warnings in my behavior, in my mind and in my body. I have a standing appointment with my pcp to do a medication check. He's pretty aware of my meds and the reasons for taking them.

Jim

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@jimhd how long did it take to to ramp up to 45mg and how’s your sleep. Have u been on it a long time ?The only other antidepressant I’ve taken is cymbalta as that helps with pain also .

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@albiet

@jimhd how long did it take to to ramp up to 45mg and how’s your sleep. Have u been on it a long time ?The only other antidepressant I’ve taken is cymbalta as that helps with pain also .

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@albiet

I started at around 30mg and after a month went up to 45. I haven't taken it very long – maybe a year or so.

I have sleep apnea and use a Bipap machine. I sleep well, though the sleep doctor has advised me to keep it down to 9 hours. Drowsiness is a factor in several of my meds, and I pretty much take them at bedtime.

I tried Cymbalta a few years ago but it didn't help either the pain or mood.

Jim

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@albiet

@jimhd do you or anyone here ever worry about trying a medication because of potential side effects or the issues with coming off a medicine. I used to take anything because of the pain but over the last year I have worried more about that and am having trouble overcoming that.

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@albiet, @jimhd, Good evening. Yes, I do worry and I do research. I have had some pretty terrible side effects. One of the reasons I joined Connect was to understand more about medications for anxiety and depression. What I found was that everyone is unique. Duloxetine has been a lifesaver for me……and others find it to be negative in some way.

I do know that the information on the paper you get from the pharmacist is just to avoid legal problems. Even if it only happened to one person, it is listed as a side effect. I am more trusting of the Mayo information and what is posted on Connect.

When it is time to review I meet with my clinician, go over the reason for changes and then together we make a decision. I am now exiting slowly from the Nortriptyline world. First…..I am not as depressed as I have been and second, I have slowly added duloxetine before tapering off the Nortriptyline which is an older drug and doesn't cover the anti-anxiety requirement. These are not easy decisions. I am fearful of bringing back the depression and suicidal thoughts.

I use medical cannabis for pain and when I need to calm down. I have changed dosages and products many times in the last five years. First, there are better products now, and secondly, legalization brings production regulation which is encouraging. For me, there are few side effects if any, from these products. I adjust when the pain increases….either the frequency or the dosage or the product. I hope this helps. It is not an easy road because of the risks of side effects and the long road off one medication and on the next one. Be safe and protected. Chris

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@jimhd

@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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I am so happy that my first attempt at meds is working – at least for now. I suspect that is subject to change so I won't get TOO excited. I am terrified of anti-depressants as I've had such negative side effects from them in the past when actually attempting to treat depression. Virtually every one of the ones I tried failed to treat the depression and side effects included anxiety, agitation, and/or SERIOUS muscle spasms that required physiotherapy to recover from.

That some people find relief in anti-depressants tells us just how different we all are.

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@iceblue and @albiet

Even after taking a medication for a long time, I'll still read the paperwork and go online to review the side effects and interactions every once in a while.

I didn't keep track of all the antidepressants I tried before landing on Wellbutrin. It's been helping me for 13 years. A year or two ago I felt that I was falling into the depression hole, and my psychiatrist had me add Mirtazapine. I had tried Abilify, but it didn't change how I was feeling.

It's interesting to read those warnings and side effects. They're almost identical whatever medication the list is for, and listening to the ads for meds on TV, I hear the same list being broadcast. Even so, I keep an eye on my health to figure out if I'm experiencing anything from the list. It's not that I'm worried. I guess I'm just a bit OCD when it comes to being informed.

Jim

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@jimhd

@iceblue and @albiet

Even after taking a medication for a long time, I'll still read the paperwork and go online to review the side effects and interactions every once in a while.

I didn't keep track of all the antidepressants I tried before landing on Wellbutrin. It's been helping me for 13 years. A year or two ago I felt that I was falling into the depression hole, and my psychiatrist had me add Mirtazapine. I had tried Abilify, but it didn't change how I was feeling.

It's interesting to read those warnings and side effects. They're almost identical whatever medication the list is for, and listening to the ads for meds on TV, I hear the same list being broadcast. Even so, I keep an eye on my health to figure out if I'm experiencing anything from the list. It's not that I'm worried. I guess I'm just a bit OCD when it comes to being informed.

Jim

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That sounds wise to me.

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@jimhd

@albiet

I take 45mg of Mirtazapine as an add on for depression.

Yes, I read the paperwork that comes with a medication every time I start a new one, and often I read the side effects and interactions and warnings. I tend to be somewhat compulsive about being informed. I look for information online all the time. So, I pay attention to what is said about my meds, and all of that is in the back of my mind all the time. I watch for any side effect and warnings in my behavior, in my mind and in my body. I have a standing appointment with my pcp to do a medication check. He's pretty aware of my meds and the reasons for taking them.

Jim

Jump to this post

@jimhd does the mirtazapine, make you not think about the issues you have?

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@albiet

@jimhd does the mirtazapine, make you not think about the issues you have?

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@albiet

That's a good question, one that I'm not sure how to answer.

I had been taking Wellbutrin for more than ten years, and between that and therapy I had come a long way from the dark depths of depression and suicidal thoughts and attempts. But a few years ago I was heading back to the black hole, so I made an appointment with the psychiatrist and he had me try Mirtazapine. After a couple of dosage adjustments I started to feel a difference.

I don't think that anything I take makes me not think about my issues. I still have thoughts about suicide and guilt and anxiety. Depression is more than just issues. I guess that would be depression that has triggers or is related to situations or relationships. When I plummeted to the bottom of the hole, life was going well. I can't point to anything that would be a trigger. For me, I think it was more an organic problem in my brain that required medical intervention. I spent two years or so to find through trial and error the medication that my brain needed.

The issues I have were addressed in therapy – things related to PTSD and anxiety and self-esteem.

Something that's been in my thoughts lately is a sense of not feeling any emotions because my meds are keeping me stable. I know that that's desirable, but it leaves me feeling flat. I think that one reason for that is that I'm not seeing a therapist right now, and haven't for several months. The man who was my therapist for a year was really good. I told him things that I'd never told anyone. But he left with just a two week notice because he had to go and tend to some family problems, and I don't click at all with the woman who took his place. I don't know at this point what I'm going to do. The only therapists in my area who accept Medicare are the ones who work through the hospital. There's no way I could afford to pay for it.

But at least I don't have the mood swings now, except maybe for discouragement. I'm able to process the suicidal thoughts and some days I can make myself get up out of the recliner and accomplish something.

Here it is, midnight, and I need to go to sleep. Thanks for asking.

Jim

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