Please help me to understand what a flare is. I read that many of us refer to having a really bad flare. I'm not sure what would be classified as a flare. I haven't felt GOOD for atleast 8 years. I way up every day in pain and after the day, I go to bed in pain. Bed time is by 8:00 pm. I am only 35 years old, and I can do only a quater of the stuff that I see 75+ doing. Is that a flare? Then by that I guess I've had a REALLY LONG FLARE. I'm not trying to sound crabby, so please don't think that is all I am, I just hurt. Which I know that everyone here can relate to. Thanks for letting me vent. Please let me know if this is normal and something that I "just have to live with". Thanks Love Mommy4
Hi Mommy4,
I am so sorry you hurt so much. I have been that way for several weeks now, but today was pretty good for a change.
Have you talked to you doctor about how you are hurting? Are you taking any meds for pain? Normally, when we are in pain with the Sjs the rheumy will prescribe Predisone or another similiar med to get it under control. My rheumy gave me a prescription of 5mg. Predisone tablets to keep around for just such times.
Here is a link to your question on "What is a flare?". https://sjogrensworld.org/index.php?topic=5667.0 It comes up every now and then and it has quite a few good explanations in it.
Waking up and going to bed hurting will wear you down faster than the fatigue. Please talk to your doctor about this and see if he/she won't prescribe something to help you. You shouldn't have to hurt like this.
Pooh
Mommy4
I have good days and bad days. The bad days (flares) typically come when I have overdone it. To get over a flare I have to rest for a couple of days - as normal people would have to do to recover from an illness like the flu. I have to pace myself in order to avoid flares. For example, if I work at a computer for more than 2 hours I go into a tailspin. My head aches from horrible eye strain and that headache only goes away after a day of bed rest in the dark. Needless to say I can no longer work because computer work and laboratory work was my career, both of which require good eyesight. Now I concentrate on the things I can do and don't try to compare my life now to the way that it used to be. No good will come of that.
From your name it sounds like you have little kids. I know it must be hard for you to get any rest but I think that is what you need.
Tuckerdog
Thanks for the wonderful support and great info! I had seen a rheumy when I was first diagnosed. a little over 3 years ago, but I don't have insurance and couldn't pay for more that the first few visits. Then my rheumy changed his career path and moved to Africa to become a missionary. :'( He was very good at understand the pain part of Sjogren's. I would love to find a new rheumy, but my kids health always comes before mine. Which is just part of being a good mom. Does anyone know of a program that could help me afford to see a Dr? I really need help. I don't have a GP anymore either, she changed to hospice care. I sound like a real cry baby, sorry. Things are probably not as bad as I think they are, but it is really had to see the brighter side. If anyone has so info., I would really appreciate some. Thanks for letting me rant for awhile. Sometimes just telling someone that can relate, really helps. Karla
And yes I do have 4 children, all under 12 years old.
Karla,
Being a mom of four kids under twelve is a big job and the hardest job on earth. I don't think anyone works as hard as a Mom. Mom's work everyday to care for their children and, "yes" children do always seem to come first. Just don't forget that you also must take care of your children's Mom, she deserved it. Sometimes "Moms" must come first. Do you have anyone that can help you with the children, so that you can get some needed rest?
I know that when my pain is at its worse it's after I have over done it, and you are probably over doing everyday just caring for your family. I feel for you.
I don't know where you are from, but if you live in the states, could you get welfare? As far as meds, there are perscription drug companies that will help and some pharmacies offer very low prices for generic drugs now, again that's if you are in the states, of course you will need to find a doctor first.
Don't ever feel like you can not come here to vent, believe me we all do. This is like our "safe place" we can come here and let it all out, knowing others will understand.
Take care and come often,
Sue
Thanks to you all for the pep talk! :) I can only hope that I can be as support to the rest of you as you have already been to me. ;D I will try my best to help anyone else that needs a big "e-mail hug". Thanks Karla
Mommy 4 Have you checked to see if there are any free clinics in your area? My state of Louisiana has a health system in place with doctors and clinics for low income and un-insured. I am not sure if other states have this type of program. Call the United Way. They fund a wide array of programs, they may be able to help. Also if you Google free medical care a few foundations come up that help for qualified individuals. That would be worth investigating. Also look for possible trial studies that may be going on near you. That would be a source of free evaluation if you were accepted.
I hope things are better for you soon. You are a brave lady. Raising four children would have me hurting whether I had SJS or not. Take care. Please keep us updated.