Fairly healthy 29 yr old, single mother just recently (officially) diagnosed with Raynaud's Syndrome and Sjogren's. I didn't tell my doctor how frequently it happened, but luckily my boyfriend works in a rheumatology clinic and said it's not normal to happen almost every day. My mom has Rheumatoid Arthritis, so I had some blood work done and my SS-A came back with 175. My doctor said I was positive for Sjogren's but there wasn't anything he would do for me at this time. Maybe because I hadn't mentioned any symptoms? My finger tips have been really dry, but I thought that was just from dry winter air. I just started noticing a dry mouth, I just thought that meant I was dehydrated. And my eyes are only dry around allergy season. Is there anything medical they can do for Sjogren's? Anyway, with my Raynaud's the dr said to keep my toes and fingers warm and watch any blisters and caluses in my toes and feet, make sure they heal well. I've stopped wearing heels so much at work because if I stood too long in them my toes fall asleep and I don't want to be a klutz and fall when I try to walk. That started about a year ago. My Raynaud's happens all the time, I'm not under much stress anymore at work and even if it's 80 degrees out, my toes go purple. I haven't seen the rheumatologist yet, he will be out of town for a few weeks, but he mentioned wanting to put me on nepifedrin for the Raynaud's. I read that can lower blood pressure? My blood pressure has a way of dropping sometimes, not sure why. Should I take nepifedrin if I already have low bp? I also need to go in for more blood work to see if I may have a connective tissue disorder or anything else that comes with Raynaud's and Sjogren's. Been having a lot of fatigue lately and brain fog and daily headaches and lower leg pain (like annoying growing pains you get as a child).
I let work know in case I have complications when I start the med(s) and to apologize in advance if I don't seem to catch on as quick as I used. Everyone seems very understanding and supportive so far.
I'm stocking up on Omega-3 foods to help with Sjogren's, hopefully that will help. Is there anything else I can do for Raynaud's and Sjogrens? I'm staying well stocked with chapsticks and lotion everywhere (purse, car, work) and drink tons of water.
Does anyone have any tips or tricks? Any other symptoms I should be on the look out for? Anyone had to quit working due these two things?
Hi there Lauralou and welcome from another newbie.
I haven't worked in 3 years and just made the decision to file for disability. I think there's lots of folks that can't work because of sjogren's. I think we all have to figure out what things make our lives a little eaiser. A little more comfy. Like you, I just thought the dryness was other stuff. I would panic if I wound up somewher without a bottle of water in my purse 'cause I just knew I would choke to death. But the fatigue, brainfog/disconnected feeling, dizziness, and joint stuff was what really got to me. 2 or 3 years ago I totally lost the ability to cry. I'm the resident onion chopper.
My family has teased me for years because of my "addiction" to lotion and chapstick. Now they get it. Some folks have to go a little further with their treatment for dry mouth but for now water and chapstick keep me going.
I'ts suggested that body creams may work better than lotion because of the thickness of them.
I've had a couple days right now where the dizzyness and unsteadyness and brainfog stuff is so bad I want to do nothing by lay in baed. I'm shaking and jerking too. There are a lot of things that are normal for SjS. It's a rough journey but you have SjS, it doesn't have you. God bless.
And this site is great for learning. People that know a lot more than I do will surely offer better advice. Excuse errors, jerky hands.
Thank you Kim!
Wow, I didn't know dizziness, shaking/jerking and joint stuff came with SjS, and I thought I had Googled the heck out of Sjogren's. :D I'll have to look in to stocking up on the body creams when I run out of lotion. I thought the dizziness was from low blood sugar or low bp.
You seem to have a good attitude about it, "it's a rough journey but you have SjS, it doesn't have you." I like that motto! So far I'm not too worried or scared, just taking precautions. Especially since I have to get more blood work done to rule out anything additional. Till then I don't know what to be worried or scared about.
Quote from: Lauralou on March 31, 2011, 11:01:10 AM
Thank you Kim!
Wow, I didn't know dizziness, shaking/jerking and joint stuff came with SjS, and I thought I had Googled the heck out of Sjogren's. :D I'll have to look in to stocking up on the body creams when I run out of lotion. I thought the dizziness was from low blood sugar or low bp.
You seem to have a good attitude about it, "it's a rough journey but you have SjS, it doesn't have you." I like that motto! So far I'm not too worried or scared, just taking precautions. Especially since I have to get more blood work done to rule out anything additional. Till then I don't know what to be worried or scared about.
The joint stuff is listed often but I don't know about the other. If it comes from Sjs I'm not sure but I've read from other sjogies who suffer with it too. And with autoimmune, who knows.
Most days I do have agood attitude about it. But every so often I have a pity pot day. I would love to be able to cry when I have those days. But since I can't I tend to get grumpy and negative. But those days don't come around too often. Praise the Lord. I just warn my family. ;D
Hi Lauralou:
The constellation of symptoms that goes with the range of auto immune conditions including Sjogren's is quite amazing.
The key is to treat the symptoms in the ways that work for you, and also bear in mine how they are related.
Generally, I find that there are a few drugs that stop the worst pain (Plaquenil, prednisone) and some specific things for dry mouth (Evoxac, Salagen, Pilocarpine), and some over the counter remedies. But there aren't many condition specific 'magic bullets' out there yet!
It will be up to you to put together a system that works for you, and stay on top of it as things change.
For dry mouth, i would suggest you monitor that closely as it can affect your teeth very badly. The RXs for that are listed above.
Read what people post, ask your questions, share your concerns and worries, and joys.
This is a wonderful forum. It helps me every day.
Keep us posted on what's happening.
Hugs
Elaine