[canagirl]

Hi

I don't know how u all live through everyday. So far nortriptiline 30 does nothing. In soo much pain.. Unbearable. When u finally get to sleep I wake up 1-2 hours later with my body burning/ stinging 100x worse than went to sleep ( and it was unbearable then).

1. How quickly can I get off the nortriptiline 30mg
2. I need a med that works for almost everybody and that works fast. What should it be? Keep in mind that I am 30 and will need meds for the rest if my life ( don't want to run out of options too soon) also, don't want to mess up my body even more.

How does anybody deal? I think bad thought everyday... There's no escaping this head to toe pain.

[Healthgirl]

Originally Posted by canagirl

Hi

I don't know how u all live through everyday. So far nortriptiline 30 does nothing. In soo much pain.. Unbearable. When u finally get to sleep I wake up 1-2 hours later with my body burning/ stinging 100x worse than went to sleep ( and it was unbearable then).

1. How quickly can I get off the nortriptiline 30mg
2. I need a med that works for almost everybody and that works fast. What should it be? Keep in mind that I am 30 and will need meds for the rest if my life ( don't want to run out of options too soon) also, don't want to mess up my body even more.

How does anybody deal? I think bad thought everyday... There's no escaping this head to toe pain.

First of all you don't know for sure if you will need meds for the rest of your life. There is that possibility, but you don't have any diagnosis at all yet. I know how you feel so I'm not dissing you. I am going through this as well. This started slowly when I was 38 and I have 3 young children.

I have found that not stressing about the future and the rest of my life is my only shot at getting through "the now".

How long have you been on the nortriptylene? How many days?

[canagirl]

I am in excruciating pain head to toe. I can't even describe it . Every neuropathy symptom u can have, I have. All over. It never atops or let's up not for a second. I can't lie down bc my bck and head go insane. I can't lie on my front bc my legs go insane ( more than the usual 10 score). I know I don have a formal diagnosis but my pm dr agrees it's sfn just waiting for test. My neuro on the other hand thinks I have bfs an depression... But when I ask her about the excruciating pain she doesn't even reapond.
I have been on noetriptiline for about two weeks and not even an inkling of relief.
I want to live for my baby so bad, but I don't know how. Everyday is a major struggle and I don't even get relief by sleeping bc there is no sleeping.

U r right, I don't know if I will need meds forever. But I can't see how this will get any better. This started a year ago and got worse fast ( mind u I think acupuncture caused this extreme pain, I had all the other symptoms before bit not this pain).
In case I do need meds forever, I want to be smart about it( haven't seen many people posting recovery from sfn except glen)

I understand people may think it's not as bad am I am saying but hinest to god it is. I am a strong person always have been. I have a wonderful husband ,we both have great careers, comfortable financially. Wonderful ( more than u know parents ) everything in my life is perfect. I am not depressed ( sorry, I am but bc of the pain not life)


I just need relief fast. Soo desperate but need to be smart about the path I take to get it.

[baba222]

Originally Posted by canagirl

I am in excruciating pain head to toe. I can't even describe it . Every neuropathy symptom u can have, I have. All over. It never atops or let's up not for a second. I can't lie down bc my bck and head go insane. I can't lie on my front bc my legs go insane ( more than the usual 10 score). I know I don have a formal diagnosis but my pm dr agrees it's sfn just waiting for test. My neuro on the other hand thinks I have bfs an depression... But when I ask her about the excruciating pain she doesn't even reapond.
I have been on noetriptiline for about two weeks and not even an inkling of relief.
I want to live for my baby so bad, but I don't know how. Everyday is a major struggle and I don't even get relief by sleeping bc there is no sleeping.

U r right, I don't know if I will need meds forever. But I can't see how this will get any better. This started a year ago and got worse fast ( mind u I think acupuncture caused this extreme pain, I had all the other symptoms before bit not this pain).
In case I do need meds forever, I want to be smart about it( haven't seen many people posting recovery from sfn except glen)

I understand people may think it's not as bad am I am saying but hinest to god it is. I am a strong person always have been. I have a wonderful husband ,we both have great careers, comfortable financially. Wonderful ( more than u know parents ) everything in my life is perfect. I am not depressed ( sorry, I am but bc of the pain not life)


I just need relief fast. Soo desperate but need to be smart about the path I take to get it.

So sorry that you are in so much pain. I have mine all over too. Now it is painful to be touched and wear clothes. Lyrica helped me along with amitriptylline. I am now off Lyrica and wish to be back. Never thought I would be wanting to take any medication. Some people get relief with a combination.

I know that lack of sleep can drive anyone to an awful place. I know that I wasn't a negative person until I got the neuropathy.

Can you go to a warm, not hot pool? Can someone help you with your responsibilities so you can be nurtured even for a short while?

Sometimes when I am slowly walking in the water, my symptoms are better.

[beatle]

Have you considered finding a good pain management physician? I spent my first year of PN swearing of meds and my second year desperately needing them. For me it came down to quality of life (or lack thereof) and the choice was obvious.

[beatle]

Originally Posted by canagirl

I understand people may think it's not as bad am I am saying but hinest to god it is. I am a strong person always have been. I have a wonderful husband ,we both have great careers, comfortable financially. Wonderful ( more than u know parents ) everything in my life is perfect. I am not depressed ( sorry, I am but bc of the pain not life)

We believe you.

[baba222]

Originally Posted by beatle

We believe you.

DITTO and DITTO!

[canagirl]

baba222

Why did you go off lyrica if it was helping? What are you on now? Does your current med work well? Dosage? thank you

[Healthgirl]

Originally Posted by canagirl

I am in excruciating pain head to toe. I can't even describe it . Every neuropathy symptom u can have, I have. All over. It never atops or let's up not for a second. I can't lie down bc my bck and head go insane. I can't lie on my front bc my legs go insane ( more than the usual 10 score). I know I don have a formal diagnosis but my pm dr agrees it's sfn just waiting for test. My neuro on the other hand thinks I have bfs an depression... But when I ask her about the excruciating pain she doesn't even reapond.
I have been on noetriptiline for about two weeks and not even an inkling of relief.
I want to live for my baby so bad, but I don't know how. Everyday is a major struggle and I don't even get relief by sleeping bc there is no sleeping.

U r right, I don't know if I will need meds forever. But I can't see how this will get any better. This started a year ago and got worse fast ( mind u I think acupuncture caused this extreme pain, I had all the other symptoms before bit not this pain).
In case I do need meds forever, I want to be smart about it( haven't seen many people posting recovery from sfn except glen)

I understand people may think it's not as bad am I am saying but hinest to god it is. I am a strong person always have been. I have a wonderful husband ,we both have great careers, comfortable financially. Wonderful ( more than u know parents ) everything in my life is perfect. I am not depressed ( sorry, I am but bc of the pain not life)


I just need relief fast. Soo desperate but need to be smart about the path I take to get it.

Canagirl,
I know its as bad as you say. I know that the pain and lack of sleep is like living hell. I can just tell you from my experience that as this neuropathy/illness/autoimmunity- whatever the heck this is slowly crept up on me and then hit me like wildfire, I was unrecognizable to myself.
I thought I was invincible. I was a happy mom, wife, and holistic health counselor- and the picture of health. I was loving life!
and then...it all fell apart.
I just want to tell you that this pain and suffering and lack of sleep turned me into someone else. I became depressed and anxious. It only made everything worse. I was so sad. I can't play my guitar. I can't spend hours in the kitchen creating recipes for the book I was working on. I was fixated on the future and what would happen.
I went through 4 months that I couldn't drive. I couldn't turn the steering wheel. I was so disoriented that I felt drunk all the time and had a hard time following conversations and comprehending things. I couldn't read because there were missing spots in my vision. The pain was crippling.
I can drive now. My cognitive function is improving (still not normal) and I don't feel as drunk as often. I have a lot of pain, stinging, pulsing, shooting, stabbing, breathing, burning, muscle spasms- but its not as intense and constant as before.

I feel that something is shifting very slowly in a positive direction. I am coming out of the depression and meditation is helping.
When that doesn't help and I need a break from the muscle spasms and nerve pain I take 1/2 oxycodone and 1/2 valium together. It gives me about a 2-3 hour break and resets my pain threshold. I don't want to become dependent on it and I want it to work when I'm desperate so I only take it a few times a week when absolutely necessary.

I hope that helps. I hope you get through this acute phase and that it calms down. I am thinking of you

[EnglishDave]

Originally Posted by canagirl

Hi

I don't know how u all live through everyday. So far nortriptiline 30 does nothing. In soo much pain.. Unbearable. When u finally get to sleep I wake up 1-2 hours later with my body burning/ stinging 100x worse than went to sleep ( and it was unbearable then).

1. How quickly can I get off the nortriptiline 30mg
2. I need a med that works for almost everybody and that works fast. What should it be? Keep in mind that I am 30 and will need meds for the rest if my life ( don't want to run out of options too soon) also, don't want to mess up my body even more.

How does anybody deal? I think bad thought everyday... There's no escaping this head to toe pain.

Hi Canagirl,
I would suggest you speak to a PM Consultant about Lidocaine or Ketamine Infusions - whichever would be most suitable. Lidocaine in particular has been used since the '60s and is recommended for SFN.
I have Lidocaine Infusions, and take Oral Ketamine to treat severe Neurological Hypersensitivity and accident damage pain, and the two combined reduce my pain by 50%. They are non-addictive and have few side effects.

Dave.