Wow! Thanks Mrs. D. This is first time I've heard this. I had one neuromuscular doc want me to take Nortryptyline but I was terrified to try it. The next doc agreed with me that I am definitely going to have side effects due to the way I've reacted to other drugs. Right now I am not taking anything regularly. I tried Lyrica for 3 weeks but stopped because it wasn't helping for the pain and I think it might have been depressing me.
My current rheumatologist (have only been to her once) want to try me on Plaquenil because of the "equivocal/ indicative of Sjogren's biopsy", and I'm terrified of that too.

I have also read a report on Plaquenil claiming that it doesn't work any better than placebo.

http://www.2minutemedicine.com/no-be...-joquer-trial/

This report is talking about the fatigue, dryness and typical Sjogrens symptoms but not about neuropathy that has spread throughout the body so I'm trying to find more info on that.

Nortriptyline is the least of the evils you mention in your post.

I think you should try it and see what happens.

It might make the "dryness" worse, but maybe not.

Do you take a multivitamin daily? One with retinol A in it (not just betacarotene?

Some people don't convert betacarotene well. Mostly those with hypothyroidism. But low T3 conversion also would do this. Betacarotene from food is converted in the liver when thyroid is normal.

Dry skin and mucous membranes may be due to low Vitamin A.

I have been reading about some seniors becoming low in A... it is a new topic being discussed on some sites. It appears that it can be a hidden deficiency.
If you want to try this use no more than 8000IU of Vit A daily for a couple of months and see what happens. I got mine at Target... their brand.
You could also use it in a cod liver oil capsule. But just take one, and don't increase doses...as it can be toxic if abused.

This intervention is taking down my "lupus like" redness on my arms I've had for years!

I do take a Carlson cod liver oil a few times a week. Maybe I should increase.

I still have a big bag of pills from when the doctors were prescribing one thing after the other.

I tried Cymbalta for one night and it kept me up all night and caused severe diarrhea.
I tried Baclofen for the spasms for a few days and it did nothing but make me more agitated.
I tried Neurontin for a week and it made me tired and miserable and did nothing for pain.
Flexeril made my already too low blood pressure so bad that I passed out and didn't even touch the spasms.
Zanaflex same thing.
Tramadol makes me feel like I had too much caffeine and does nothing for the pain. I tried it 3 times.

I am able to tolerate 1/2 valium with 1/2 oxycodone but only take them when I absolutely can't deal with the pain. If I take it, I am able to break the spasms and reset for a while so that I can cope by meditating and moving carefully. I get through most days with out taking anything but my quality of life is pretty crappy.


I called the pharmacist on an excruciatingly painful day and asked him what was the lesser evil between Nortrypyline and gabapentil/ Lyrica and he said for sure Nortryptyline was worse, so that was why I gave Lyrica a try.

Many people here over the years have used nortriptyline successfully.

If you have the 50mg tramadol...try 1/2 tablet. That works for me when I am having a rare flare. If you only have the ER...well, you can't cut those. I find 1/2 lasts me more than 24 hrs. I must be a slow metabolizer.

I would still try the nortriptyline... there will be some sedation at first, so take it at night. But that goes away quickly. I used a tricyclic for a year (doxepin) for a severe sciatica attack. It worked well, and helped me continue working. I used a low dose only.

The diarrhea from Cymbalta is due to the serotonin overload in the GI tract. Some people cannot tolerate SSRI or SNRI drugs for this reason. The tricyclics are much more gentle.

I found Tramadol would sometimes give good pain relief and other times it didn't seem to do much for me. I read a tip someplace from an older person's patient review awhile back, and that Tramadol needs to be taken with a full glass of water. That was the secret to taking the med, but he didn't say why, so I didn't know if it just prevented stomach discomfort, or what. But since I started taking my Tramadol with a minimum of 6-8oz of water, I've had good pain relief with it every time. It surely won't hurt to try the tip. Good luck.

Tramadol is a protodrug...it has to be metabolized by the liver to its active form before it works on pain. Some people lack the enzymes to do this and so for those people tramadol is not a good pain reliever.

I tend to get nausea from it....about 2hrs after taking it. If a long period goes by and I don't use any, the nausea comes. But if I use it once or twice a month, or daily (like I had to on vacation when my back went out), I don't have any side effects from it.
I only use it once a day at night. My first dose was a whole 50mg and that was tough. I think tramadol is very different for each person.

One should always take a good amount of water with any medication. Some can burn the eosphagus or stomach if they just sit there with little or no fluid to dissolve them.

I had the same problem with Neurontin/Gabapentin, but after a few weeks I actually adapted. I combined a small dose of nortryptline with the 2400 mg of gabapentin and it has been very helpful. I do get a bit of a mouth dryness with nortryptiline so I try to take in extra fluids.

I feel like I've read some literature on effectiveness combining drugs (particularly nortryptline and gabapentin) at low levels instead of taking just one drug at a higher level. Perhaps someone can chime in...