Acceptance is admitting defeat, one should always be searching for that little glimmer that makes Coping so much easier.

thanks englishdave. It's just that I feel I have to accept otherwise I don't know what may happen. At this point, I feel no purpose in life because each minute (literally) is spent trying to overcome the pain (in every part of my body ALL AT THE SAME TIME) and it's exhausting just getting from one minute to the next minute. Why go through this? what's the point? I am miserable. everyone in my family is miserable cus they feel for me and can't do anything. all do is cry.
From all my reading and asking posters here, it seems like there is no recovery (pretty much only worsening or if lucky you plateau). so holding out for that glimmer seems like it is making it worse. I feel like that's what got me into this pain in the first place (hope that acupuncture could fix my NON PAINFUL symptoms). I don't know...I know I am so negative. I feel bad for my continued posts but it helps me to not feel so alone when you guys respond. I appreciate it more than you guys know.

I'm part of a fellowship where acceptance is one of the main principles. Acceptance does not mean you have to approve.

Regarding another issue I deal with acceptance was a step towards freedom.


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Canagirl,

I am not comparing pain here, just explaining.

For Donkey's Years I have suffered chronic Cluster Headaches and Chronic TN - arguably the two most painful conditions known to medicine. For years I thought the two were linked and sought no treatment for the white-hot railroad spike pain driven into my brain, behind my left eye up to 8 times a day, every day.

Then I was diagnosed and - after countless changes and juggling of meds my Headaches (almost impossible to treat) are cut to 3-4 a week and the TN intensity is dulled by Lidocaine and Ketamine - which also treats my body-wide Hypersensitivity. Musculoskeletal and arthritic pain is helped by Tramadol and Arcoxia.

From a general 9 at the end of my Infusion Cycle with meds worn off, I drop to a 4/5 when fully loaded up. I have learned to tolerate and cope with this level even with my Depressive Disorder.

The only time things are uncontrollable mentally now is during a Headache or TN Attack when pain is around a 12-15.

The point is, there is a long road with many treatment options to try. Stress and Depression - while understandable - do increase physical pain by 2 points or more. You have to learn to relax, be patient with the length of time it takes for meds to take effect.

You have already stated you benefit from the Forums and the wonderful Members, but take yourself out of your mind in other ways as well. Do you have light hobbies that can tax your mind? Even engrossing tv shows or films can distract - especially comedies.

Please don't resign yourself to a lifetime of this level of pain. If they can reduce mine with all my issues there is hope for anyone.

Dave.

You have already stated you benefit from the Forums and the wonderful Members, but take yourself out of your mind in other ways as well. Do you have light hobbies that can tax your mind? Even engrossing tv shows or films can distract - especially comedies.

englishdave, I know you are right. My problem is I can't tax my mind. I am dragging myself to work everyday b/c if I stay home it's worse. I have a baby to take care of that keeps me busy until bed time. I am unable to watch tv or anything b/c the pain is excruciating and I can't ignore it. agghh.. that's my problem. My brain can't figure out how to move past the pain, I feel my mind is a broken record stuck saying the same thing. Even if I am engrossed in an activity or conversation my brain is still talking to itself about the pain. I know I am impatient with the medication but it's been two weeks on the nortriptyline and barely a dent. I am already at 30mg. So another two dose increases, then if it doesn't work another 5 weeks to come off! then titrating up on another med. I don't think I can last.

Anyway, I wanted to ask you a question about the infusion. If it works so well why doesn't everybody do it? are there long term consequences? do people become addicted? Does it stop working after "x" amount of years? Why don't u do a ketamine infusion too? why are u taking oral ketamine?

You have got to stop and give yourself enormous credit for all the things you are doing. Working and taking care of a baby while trying to cope with painful and scary symptoms are more than most people could handle!
I hope that you are able to get a referral for pain management quickly as I firmly believe that there is a medication or combination of medications that will help you.
Many of us do have incurable and progressive neuropathies,but do not assume yet that you fall into this camp. You are younger than most of us and your symptoms came on quickly, so hopefully they will be able to treat not only your pain but your symptoms.
Large fiber neuropathy doesn't usually come on suddenly, it is a long term process usually accompanied by muscle weakness. I have both SFN and LFN but mine is hereditary. It will show up on and EMG/NCS.
It is really inadequate to say this to someone who is suffering as much as you are, but I do believe things will improve. You will eventually find a doctor who can help you regain a decent quality of life. Keep that in mind.
Everything seems so trite, but if there is any indulgence that makes you feel a little better, starbucks, good chocolate, really soft lounge clothes, this is a good time to treat yourself. Every day is a victory right now.
We aren't all zen masters who have managed to conquer our pain, we are just far enough along on this path to have some idea of what is going on and what helps. You will get there too.

Hi canagirl
I've been following some of your posts and have a general idea of what you're going through - sorry if I mess up on the details - insomnia last night makes for a fuzzy brain in the morning.
I understand your urgent need to relieve the pain and find answers. Your mind and body are in shock from changing from being a normal functioning person to this 'new you' which you find unacceptable, intolerable and down-right frustrating.
Five years ago, (after 10+ years of mis-diagnosis) I was given a diagnosis of a life-long auto-immune condition and was told "There is no cure - you have to learn to manage it". One of the important things that helped me was to learn to 'stop being so hard on myself'. I had to stop mentally berating myself for all things I was no longer able to do. It helps to remember to 'be kind to yourself'. I often say these 2 things when I'm going thru a tough moment. Another one which I use is 'time for a break' when I find myself over-doing things.
Consider yourself a step ahead for finding the Neurotalk website early on - it took me over 4 years - this network has helped me to manage my search and hopefully soon a diagnosis and treatment for another secondary condition which is developing.

Re your questions on pain management I came across a link by another poster earlier this morning about a useful neuro website about pain treatment. If I remember correctly it mentions that an expectation of a reduction in pain, with medication treatment, of about 30% is normal. I haven't been able to refind the post but did bookmark the site. Here's the link:

http://myelitis.org/symptoms-conditi...ropathic-pain/

Hope this helps. Stay strong in your search canagirl.

Canagirl,

Quote
"Anyway, I wanted to ask you a question about the infusion. If it works so well why doesn't everybody do it? are there long term consequences? do people become addicted? Does it stop working after "x" amount of years? Why don't u do a ketamine infusion too? why are u taking oral ketamine?"

I do not know why the Lidocaine (and Phenytoin is another) Infusions are so popular and successful here. There have been Posters from the States treated and benefitting, and all of the literature and research comes from there. There is a fair amount about usage in treatment of SFN.

There are no addiction issues, if the IV rate is too fast it can cause heart damage. I had to take a break when I had a heart attack (unrelated), but was cleared by my Consultant Cardiologist to resume 3 months later. Those 3 months were excruciating. Relief hasn't diminished after 8 years, although dosage has gone up as my weight has increased.

I don't have Ketamine Infusions simply because my PM Team don't do them and I would have to be driven way too far out of my area to benefit from getting them. The Oral Ketamine keeps me ticking over and I have dosage/timing leeway of a reasonable amount so I can target flares, having to go out, sleep…

Dave.

Canagirl I know your pain is intense and can I suggest being familiar with the pain scale, its an important step in the journey and also to let your doctors know

https://lane.stanford.edu/portals/cv...Pain_Scale.pdf

Pain so intense you will go unconscious shortly. Most people
have never experienced this level of pain. Those who have
suffered a severe accident, such as a crushed hand, and lost
consciousness as a result of the pain and not blood loss,
have experienced level 10

My life has changed completely after 8 years of struggle and terrible thoughts. I still have issues but the acidic burning is no where near as intense and its a life changer in regards to having some hope for the future and general day to day living. I always found that not having hope was soul destroying, I mean whats the point of going on if there is absolutely no hope?

The pain is now 3/10 and here is what helped me .

1. Atkins diet
no sugar
<20 carbs/day

2 Exercise http://snip.ly/q0zg#http://www.neuro...rticle/408680/ I dont have diabetic PN so exercise works on all types

one hour per day on the bike/weights

Ive lost 20 kilos over a 7 month period .Near zero carbs and sugar have an almost instant effect on pain levels. Give it a try, its worth it

Thnaks for the diet tip. I have been sugar free ( except for natural sugar found in strawberries/blueberries/ blackberries) and pretty much carb free ( once a week I might have potato). All organic and nothing that comes out of a bottle, bag, box or can (except beans and occasional can of tuna) . Been doing that for 4 months with only three "cheat" meals in which I have ha bread and potato. Haven't noticed a diff yet... Still trying thougj

pls take a look at this website. No fruit, no potatoes or bread, no cheats...As pn sufferers we have to try harder than the rest. http://forum.lowcarber.org/ see Atkins induction

I had a look at some of your other posts and it looks like to me that you are on the extreme level of the pain scale and I fear that 30mg of Nortriptyline would be completely infective for that level of pain. Until you have some pain control then you wont feel like dieting or exercise, I certainly didn't!

Imo a visit do your doc with pain scale in hand and point to the number should help. I would have thought that 600mg Lyrica, 400mg tramadol and 30mg Nortriptyline would be an effective daily dose, thats where I was for years and years

Dont worry about addictions , worry about pain control