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?

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.

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.

We believe you.

DITTO and DITTO!

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

Nothing has taken the pain away completely. I have some blood problem where I have low platelets and low white blood cells. I was taken off Lyrica because it can cause low platelets.

I am now at 50mg amitriptyline and dosing up. I was on gabapentin but maxed it out prior to Lyrica and my symptoms were ramped up.

Everyone is different, but few find complete relief due to side effects.

My SFN is all over. I have been with symptoms for only nine months, but now having a difficult time remembering how normal felt.

I had a charmed life before and would give every world possession to go back. I found it extremely frustrating when the doctors kept focusing on my anxiety and not doing their job.

I kept being asked if I had stress in my life. Who doesn't? But no amount of stress could cause me to have this suffering.

I agree with folks here, it might take some time to find what medications/combination help. I take 200 mg R-Lipoic acid daily and this helps some with the pain.

I am so sorry for your pain. I was very desperate when I came to this board. Several folks helped me a lot! This board rocks!!!
HTH.

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.