Helloooo there
I had sjs for 10 years and lately I do feel the same as u with getting ahorrible flare if I face the sun and my doctor said its Raynaud's Disease and it cames with sj and that so weird to me I hardly touching things with my cold hands and also hardly to walk,I'm still don't know how to deal with it and how to reduce that coldes, I really don't know what's kind of disease is that every day new things happend to me.
Take care and have anice day

sorri to hear ur having a rubbish time, i take 50mg of amitriptlyne it doesnt make me drowsy fortuantly however i do tend to get very few side effects from meds, i take neurontin (gabapentin) for nerve inflammation it is brilliant !! no other pain killer works for me on nerve pain like it, and its the most horrible sickening pain aswell maybe u should suggest trying this to your doctor? as for amitriptylyne mayb as you take them you,ll find your system mite come round to them and you will feel less drowsy as you get used to thm. hope this helps xxxx

When they checked your thyroid, did they do the TSH test and a thyroid panel? My TSH never went over 2, which should have meant I was in good shape, but after six months with the energy of lint, I finally talked my regular doctor into ordering the thyroid panel. It showed that I was running on fume and he actually apologized for not running it sooner. I have Hashimotos' thyroiditis, or autoimmune thyroid disease, which runs in my family. Treatment with Synthroid wasn't very satisfactory, but I've done great on Armour thyroid which has all the thyroid hormones ready to use. The TSH is very accurate but unless they have a baseline on how that number relates to your thyroid levels, it's useless.

I know the fatigue from Sjogren's can be unpredictable, but you really should rule out thyroid dysfunction before moving on to other solutions. Cold hands, blinding fatigue, hair loss, etc. are typical low thyroid symptoms. Treating my Hashimoto's went a long way to improve my Raynaud's and reduce the incidences of cadaver hands! I also carry around those little stretchy gloves to use at the grocery store to reduce triggering an attack from picking up frozen foods.

Good luck!

If you don't mind my asking, how long have you been taking the amitriptyline and when/how often do you take it?
Did you start out on a low dose and work your way up to your optimal dose?

I might have a suggestion or two for that.

I haven't been taking amitrpthyne very long. I started on one tablet and doc said to add another but I will stay at one for now. I actually cut in half and now take one full one. It does seem to be getting better.

I took a metabolite of amitriptyline--called nortriptyline--years ago for cluster/migraine headaches.

I took it at bedtime and noticed it caused a bit of residual drowsiness the following morning too... but I did get used to it.

The key is to start off low and slow. and work your way up to the optimal dose. I was going to suggest that you talk to your doctor about the possibility of backing off the dosage and slowly stair stepping up. But it sounds like you're already doing that..

If you are taking this at bedtime, you might also consider taking the medication a little earlier in the evening. That way your body is processing it, it is doing it's thing, and perhaps the hangover will be less intense the next day.

Please discuss any and all changes you make or side effects with your doctor.

As for the chills.... I would be cold on the Sun! When it comes to cold hands and feet, have you considered one of those home paraffin bath things that you can coat your hands and feet in layer upon layer of hot liquid wax? I love mine. It not only helps warm things up, but takes out a lot of pain from those bones.