Update
 

Hi folks, long time, no post. I have bern busy just keeping my head above the metaphorical water, pressing on, keeping moving.It is hard to put things in a better or worse category so I will mark it as different.

I was having massive issues sleeping for such a long time due to my symptoms. The buzzing and muscle spasms just wouldn't allow me to get comfortable. I think the combination of tramadol, topamax and time have caused me to get a schedule that has adapted to sleep, among other things.

I did reduce my exercise, which reduced my spasming, though I am now more fatigued! It kind of blows me away. Where I used to be unable to sleep no matter how tired I was now I find myself sleeping right after work more days than I care to.

I still wake a few times even on good nights, though I am able to settle myself just about every night within minutes of waking. I wish I could type out a guide for it, but I am at a loss. I will say that mindfulness does play a roll in my success, but I also have to point out that I take medication too.

Day to day is still a struggle, though after running into a calcium issue that turned into a bout with kidney stones I left eating vegan after 2 1/2 years. I just felt that maybe I needed to balance out my diet a bit more, though I also kicked my beloved coffee to the curb and am more hydrated than I have been in my life, including my long ago athetic days. I wish I could report this hydration has improved my neuropathic pain.

Before the summer my wife picked up a nice pair of shoes for me. I usually wear boots for the support, ability to keep pressure off my forefoot and they really keep me protected. I do not have a regular issue with allodynia so the tightness is not an issue for me.

What I have found from this shoe wearing is that the boots are truly my best bet for regular wear. I do my best to not walk too much and I certainly do not stand too much (a buzzing crescendo develops like a well developed gumbo) I have learned a lot from the summer of shoe. They will work great for events when they are needed, but I have some redness in my middle toe joints that was not very pronounced before.

Buzzing, numbness and fatigue are my largest battles at this point. It is really at a level where I have considered taking Lyrica again. It was an excellent medicine vs buzzing, though I did find some creeping through before I titrated off, but I found the cognitive deficit I experienced to be too much.

I guess I have to decide which is worth dealing with. At the moment I am more inclined to be Belushi as a bee and buzz, buzz, though I have had exacerbations that make me feel like being little bunny fufu.

There are difficult days and less difficult days. I try my best to find my smile, failing more than I like, but picking myself up every day. I don't think it is progressing very fast at this point, though my legs to around my knee are pretty rough and my arms from elbow down are in similar, though not as dire state.

I am extremely blessed to have an understanding and wonderful wife who lets me pass out on days when I am cooked and looks after our kids. Our 10 year old is as understanding as a 10 year old can be (plus whatever modifier can be used for maturity- she is truly amazing) and my almost 5 year old, well, he sometimes roughs me up, gets that Dad is sick, but he is young. So he doesn't really get it.

I hope all of you long timers are as well as you can be and newer posters gleen as much useful knowledge as possible from this knowledge base as I did. Do what you can to address the issue yourself. It has limits of course, but there is usual something if not multiple somethings that we can do to aid ourselves.

I have likely well passed the ramble point well into babble.

Anyway, my best.

Jon

Jon, thanks for catching us up. I enjoy reading your posts. You have a wonderful gift to be able to add humor and analogies to situations that I know are not funny. Thank you for that breathe of fresh air this evening.
carol

Hi Jon

Really good to hear from you ( : Was thinking of you the other day and wondered how you were. I've always enjoyed your contributions. All the best

Hi Jon

Thanks for the catch up - it's good to hear you're managing and keeping moving.

Sorry I'm not up to a cheery post right now - fighting a brain-numbing head-cold. :Sinking:
Maybe catch up later when I get my head above water.

Please drop us a post occasionally - we miss your witty and empathetic contributions.

Update of the update
 

I had a skin biopsy done in the spring. While I have had large fiber neuropathy confirmed since 2011 and sfn symptoms for a long time it was not confirmed.


Today I received the results from the biopsy.

left calf- normal value >4.4 my nerve fiber density 0.0

left lower thigh normal value >6.0 my nerve fiber density 3.8

left upper thigh normal value >7 my nerve fiber density 1.8


Abnormal nerve fiber density at all sites. This is consistent with a severe neuropathy affecting small nerve fibers.

On the plus side the morphology is normal on what is present & despite results worse than I expected I am holding on fairly well. I struggle at times with pain, fatigue often, but I am going to do a sleep study to see if apnea plays in at all on that front.

It is good to have the hard numbers, but I am still startled a bit by them, especially the calf one.

Hey Jon :)
 

I wonder if since you are doing somewhat better if you will have better results in 2 years time.


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