Me again.. How do people accept?
 

Hi

I feel as if the nortriptyline has knocked pain down from a 10 to a 7 /8. However I'm still not happy. In fact, it's even adding to my stress cus I'm scared that I am on a med to kill pain and I'm still in this much pain. I have in and took the med cus pain was worsening by the day, so now I'm thinking "what if pain us still worsening.. That means the med is working a lot not a little?" So in scared to go off it. Ahh! I can FEEL my body react to this stress ( I think. I hope that's why I feel my symptoms increase ). Then I stress about the fact that I can't feel all the pain bc med is doing something.
Seriously? What is WRONG with me? Please explain how u don't obsess over this beast. How do u accept that not one inch of ur body doesn't feel ALL of these stupid sensations and pain? How so u just ignore and try to sleep Nd or live ur day? I WANT to do this!!! I feel weak and broken that I can't. The nortriptyline is an antidepressant too so im hoping it help this but not yet so far.
I try to meditate but can't bc all I do is feel my body more. I try think of something diff when thoughts of this beast consume me but it only works for a few seconds.
Does anybody take pain med ( whatever the class) and an antidepressant for the real purpose of depression? Does it work?

Good Morning canagirl :)
 

Canagirl,
ADs take several weeks to get into your system and start taking full effect. I have to take Mirtazapine due do my life-long mental condition causing severe Depressive state. If they didn't work along with all the pain and associated pain killers, well…
As for meditation:

http://www.how-to-meditate.org/breat...ditations.htm/

This is my Teacher's simple, but extremely powerful Breathing Meditation technique. Although it is a Buddhist site this technique has nothing to do with religion or philosophy, it is aimed at everyone. If I can manage to meditate, anyone can master it.
The trick is to start small, say 10 minutes in a peaceful room with no distractions, and be happy with 2, 3 or 4 minutes of clarity of mind to start with as you get used to emptying your mind and concentrating on your breathing. Once mastered, the technique becomes easier and the length of time increases rapidly.
Of course, anything that strengthens our minds or distracts us from the pain of our conditions is a positive. On that point, keep Posting, relieving stress here to your peers is an outlet you will find helpful.

Dave.

Breathing control is absolutely essential I think for managing pain. Pain is basically an acidic process at the receptor level. Hyperventilating removes carbon dioxide from the blood and makes the blood more acidic.

By breathing carefully, you can reduce the pain, by keeping the blood from getting too acidic. I learned this for my GI pain that I was born with. (I have a birth defect that results in twisted intestines). I have learned to control this and prevent a serious long term torsion, which may result in surgery some day. And this allows me to not need so much medication.

Yoga teaches breathing also, and some posters here have said that yoga helped their pain as well.

Can you take walks? Maybe some light exercise will get the blood flowing and help.

I can take walks and do so everyday. It doesn't help....

Sorry about that...hope you find relief.

So sorry about this for you. I have changed a great deal since my symptoms started. It is a process of grieving and I am not anywhere near acceptance even though I have gone through all the testing and seen more doctors in the last year than all previous ones combined.

I am not sure if you have tried the Epsom salts bath? That helps me a little when I get close to a 10 situation.

Also, when I go into the handicapped warm, but not hot pool, it decreases my pain some.

The neuropathy paradox is that lying, sitting, as well as exercise can all make the symptoms worse.

Hope you find some relief soon.

Canagirl,
I realised I didn't answer your main question. One should never 'Accept'. You WILL learn to cope, your mind and body WILL adapt as you follow medical advice, try things you select that are suggested here and become stronger.
Acceptance is admitting defeat, one should always be searching for that little glimmer that makes Coping so much easier.

Dave.

For me it is a constant battle. Valley at the moment, but past valleys hsve informed how to deal with it better. At work I keep to myself of late. I get a remarkable amount of work done considering how I feel.

A few days ago, while waiting at the printer/copier a co-worker approached and said "I miss upbeat happy Jon." sounding troubled by it.

Sometimes things don't go through enough review stages and drafting before exiting my mouth.

Dry as a white wine escaped "I am terribly sorry for your suffering"


Back to work. There feels like no way to win. As I am a natural introvert, I go in.

So it goes.

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 :)

Zorro1, Canagirl,
We had a conversation about differing Pain Scales here:

http://neurotalk.psychcentral.com/thread216281.html

They vary wildly, and you simply need to ensure you are referring to the same Scale as those you are talking to. Research the Scales, find one that best describes your pain levels and take them with you to appointments.

What is the point of stating you are at an 8 when the person you are talking to is hearing 5?

Dave.

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?



Are you on any medication? were you? How long did it take for the burning to decrease?

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

Sorry about last post, didn't notice this piece. U said this medication combo is where you were at for years and years. Are you off meds now? Decrease dosage? dropped one or two? Or did these stop working and you had to switch?

THANKS!

I cut back to 50% 300mg Lyrica and I use Tramadol when necessary. The meds work okay at these levels however I mainly wanted to point out what a typical drug cocktail would be for the high end of the pain scale where you are at the moment