Dearest Sjogren's Angels,
So here we are back from a good trip to Florida to visit friends and family-to-be (Our son's fiancee's mother and step father). We got home yesterday and today I woke up with myalgia (body pain all over), headache, tired and cranky, and my skin burns and tingles! WOW.
These are the symptoms of a flare! How can I have a flare with gazillion medications? (Medrol, Gabapentin...endless stuff).
How can this be?
I'm too generally miserable to try to even figure out why. I haven't felt bad like this since I can't remember when. Boy, even the inside of my mouth feels weird.
I can't think right now, honestly. But I wonder if I am having a reaction to something I've been taking for ages, or what? Is something blooming here now?
I would just want to sit, but I'm feeling sad and anxious and my feet hurt. This is clearly a flare..how a flare got through all my meds is beyond me.
Boo hoo, I feel sorry for myself: depression!
Ok enough of this. It is what it is. I don't get to choose. I forgot that. I always forget I'm not in charge.
I will wait and see what happens.
Stay tuned!
Hugs, Elaine
Its easy Elaine..you just got back from trip..it took a toll on your body. Even though you had a wonderful time, its amazing
what that will do to us.
Try not to figure it out and just relax and get some rest. Try not to do much of anything for the next few days.
Feel better soon!
Gursie
Dearest Elaine,
I am so sorry you are having a flare - as you know, it is O.K. to feel sorry for yourself. I feel sorry for you, too.
It is wonderful that you had a great trip! I hope your current misery is temporary, as in Gone very soon.
My hubby, I and two teen grand sons have a 5 day trip to Hawaii on Mar. 28, and I am trying my hardest to Not stress about it. I know that sounds ridiculous
to most people.
Hugs and love to you, Tricia
That is exactly what a 'flare' is...any symptoms outside of the normal boundaries. It can be brought on by any number of things. You might be coming down with a bug/cold or maybe the trip itself just took a little more toll on you than you thought.
Is it possible you forgot to take one of your meds?
You may feel better tomorrow without even knowing why this happened. Sometimes we never find out what caused the flare.
I'll echo that the trip itself may be part of the trigger - whether it's the travel, the doing more things than you usually do, eat something you don't usually eat, or getting out in the sun more.... Any of these might be a trigger.
Give yourself a few days to rest up, and see if you feel better.
Thanks everyone! I knew I could count on you all.
gursie, it may have been the trip, and I never do anything much, so that part's easy. But we took a trip in October/Nov. and it seemed ok. This is just weird.
And I don't have anything left to take for this! I take it all already.
I do assume, Tricia, that it will be gone soon. But you know, when i feel bad, I can't think about being better...I spend all my time trying to work around feeling bad, sort of fighting it, or whatever. It's just weird, I can't relax and just accept it.
The thing for me, Anita, is that I haven't actually been sick with an infection since I started IVIG, but I just went BACK to this time last year, and guess what? I had the same weird symptoms then? What? I had the word FLARE is my Infusion notes.
Yay for keeping a record! I would have SWORN I didn't have anything like this since I started infusions and Medrol.
But I WAS WRONG. So I had this before, last year in March. Weird. This is the point of writing to you and keeping my infusion and health history. I can have a sounding board and I can check.
I don't think I forgot to take any meds. I'm pretty organized with that.
So warmwaters, this day is almost over. I also know that this is small stuff compared to most of what most of us are suffering.
How petty of me to feel 'sorry' for myself.
I'm basically happy and I know how lucky I am.
Hugs, Elaine
Rest and sleep is what you should do now. No stress lots of quiet time, it sounds like a flare, hopefully it will pass soon.
Hope you feel better very soon!!!
Elaine,
Maybe you're allergic to NC? Sounds like you were doing great in FL!! ;)
Feel better soonest!!
Amanda
Elaine,
I have noticed a pattern of having flares. I can have company, go on vacations, prepare for holidays and most of the time do fairly well. When the event is over 95% of the time I will just crash with unrelenting fatigue and it takes several days to recover. The only thing I can do is just rest and sleep.
Hope you feel better soon.
Anna
Anna, that pattern you describe sounds like my flares too. I am sometimes amazed how we can push ourselves so hard, then suddenly collapse in a heap.
Hope you feel better soon, Elaine. Get your rest. You earned it.
Sorry you are not feeling well.
I find that when I go out of the safety, comfort zone of home I have created, consciously and subconsciously, (my real life 'spoon theory') when I return home I am 'off' for days, needing rest; symptoms that were managed in the zone come to the forefront.
Last weekend I spent two days taking care of some business away from home.. and am just now feeling better. Bone aches, malaise, etc.. discouraging as the sun and weather is finally good here in the north. But, I have been sleeping for days.
The road trip we took last summer.. came home and crashed for about two weeks.
More than simply sitting in a car for us.. it is a stressor on our body ---> then mental state.
Then too when traveling, visiting people we are no longer free to be on 'our' time table; rather a series of commitments.
Even some healthy people come home from trips, vacations tired.. needing a vacation after a vacation... get back into their routines (comfort zone).
Hope you feel better soon.. rest.
First of all I'm very new here and this is my first post. I'm glad I read this post as it might explain why I've been feeling so bad these past few days. I was diagnosed with cutaneous Lupus and Sjogren's in Jan. and after starting Plaquenil was doing not too badly, although nowhere near where I used to be. I used to attend two exercise classes and three dance classes a week befor this all kicked off. My main problem is fatigue. It was my birthday last Tues. 10 and my dear husband arranged a trip to London for 3 days which included a show and dinner at a very posh restaurant. I didn't get to see the show or have dinner as that day was spent in bed at the hotel, I was so fatigued and unwell which I now presume was because of the travelling, so it was comforting to read the comments on this subject, although I'm finding it difficult to come to terms with this.
I agree with Anna and everyone else who feels this may be caused by the stress of a trip, even if it is something joyful!
I became so sick and fatigued that I quit my job as I'm sure people are sick of hearing me b--ch about.😉
I then was able to focus all my little energy on my family. I spent a week with my oldest daughter when she had her third child - and a C-section. I was so relieved to be able to go and to actually be of good assistance! It was a very joyful time, but when I came home I crashed for about a week. (Just so thankful that I didn't crash when she and the kids really needed me!)
I spent another week with my youngest daughter when she had her first baby and I know I was invaluable help to her. Again a joyous occasion and thankfully I didn't crash until I got home.😃
I went to Jamaica on vacation with friends and fretted that it might be just too much for me. With careful planning and preparation it was enjoyable and I started to really crash on the way home.
At Christmas I had a house filled to the brim with family and three extra dogs! It turned out wonderful but I worried so much about my energy and really planned to make it work. Again I CRASHED when it was all over, and that's okay.
My son is getting married in May in New Jersey. I live in Illinois and all my daughters, family, grandkids, and a friend are caravanning (driving) out together. I will be needed to help with the children. Also, my son has asked me to do a reading at the wedding and actively participate during certain parts of the ceremony.
I am thrilled but scared to death. What if I crash? What if I become hoarse (like I seem to do so often) and start coughing during the reading??? I think my daughter would be a better reader, but he has asked ME and he wants me.
It is hard to be in a hotel room and have to share with family. What if I start coughing and wake everybody up? I'll be bringing my vaporizer, nebulizer, myriad meds, facial steamer, etc. it's a lot of work just trying to make it through the day. I'll be gone for about a week.
Please pray for me that I do a good job. I don't care if I crash afterwards - I just want this to be special and I don't want this to be about me! I want to add to this beautiful day and so I am planning!
Any suggestions would be appreciated.
Elaine I knew you were on vacation cause we hadn't heard from you in a bit. You were missed! Sorry you are feeling so bad, and hope with TLC you will feel better soon.
And now to change the subject! I assume that the picture on your post is you? You are a great looking woman and should be proud of yourself. Considering all you have been through! You really look great!
My goal is to look half way decent for my son's wedding but I think I have my work cut out for me! Ha ha!
Kathy
Wow Kathy! you are in the 'prime of life'! What fun, but I know what you mean about the crash part. Somehow I didn't think this was 'stressful', but of course it was!
By yesterday evening I was worried I would wind up with a big patch of cold sores, which would be nothing compared to what Gursie is going through, but is so scary to me.
However, so far that hasn't happened, AND today I do feel better. Who knew? Yesterday I couldn't think past the next hour. But you guys got me through.
Hugs, Elaine
Elaine, sorry you came home from a wonderful trip to a flare!!! Ugh!!!!!
However, I have to agree with several here, that happens to me sooo often when I travel, even short day trips. It wears me out. I can hardly drive anymore and our current car has tinted windows which I think really help. But often, I feel great on vacation and just crash really bad when I get home. And, I am not an over-do'r....
Can I ask why you take IVIG? Is it for the SJogren's or another auto immune situation? I didn't understand all the acronyms.
Again, I hope this is short lived for you and you wake up feeling great tomorrow!!!! :)
Hi Deb 27,
I am one of several here who have Immune Deficiency (low count or complete absence of two or more of the 5 Immune factors, A,G,D,E and M). I am very low in IgG and IgM.
IgA, IgG, IgD, IgE and IgM are the factors in our Immune system that are also called antibodies. Antibodies work to defend our body from outside invaders: fungus, bacteria, and viruses. When we are deficient in antibodies, we don't have enough defenders, and we get infections. Some of us who have this deficiency get very sick, hospitalized and often have severe damage to organs/systems from chronic infections or severe infections.
IVIG is Intravenous Immune G (IgG also called Gamma-globulin). This Gamma-globulin is taken from the blood of paid donors, and infused into our bodies to give us more defenders. The 'borrowed' Gamma-globlin only lives a short time, and since we don't produce enough of our own, we have to have more on a regular basis.
This condition, Immune Deficiency is different from autoimmune condition. Our Immune System may produce AUTO antibodies along with the helpful antibodies. Auto antibodies attack our OWN BODIES (hence the term AUTO - self). Most of us with Sjogren's, Lupus, Hashimoto's, etc. have auto antibodies which are attacking organs and systems of our own bodies. Sjogren's attacks the moisture producing systems, although it can attack any part of the body. Lupus is known for attacking the kidneys, Hashimoto's for attacking the thyroid gland.
And some of us have won the Immune Sweepstakes and have BOTH an Immune Deficiency and Autoimmune factors attacking our own bodies.
We can't defend ourselves without help, and our own immune system is attacking us. Fun, eh?
Don't hesitate to ask more questions. We are always here to help where we can. And, yes, we do speak medical letter jargon all too often.
Hugs, Elaine
Well, dearest angels, the flare seems to be gone.
You know I would have sworn this hasn't happened since I started IVIG and Medrol. But I keep a daily diary and when I checked back, sure enough, there were other flares.
I think we repress them for a very good reason.
Now I'm easing back into feeling pretty good, tho' I know how fragile that is. And we have a BIG trip, 23 days, compared to this 8 day trip, planned for May/June. However, I will just go with the flow and see what happens.
Hugs, Elaine
I'm glad you feel better, Elaine. I often get sick when I travel...it is often respitory issues, but I can get flares too. I think a change of weather can be a big issue for me. AND mid Florida can have lots of allergens in the air. Just some ideas, that may not have occurred to you.
I can relate to what you said about how yesterday you "couldnt think past the next hour." Geez, some days are so difficult. And, I have to control my thinking, otherwise, I could very easily get depressed. But, I say to myself "this too shall pass, it always does." Some days, it is a struggle to believe this. And, people who understand (like you and the others here) certainly can help one get through!
Blessings! :)
Happy you're feeling better, Elaine. Flares are not fun. But if I could answer your question of "I wonder why?", I'd be rich!!
Hugs, Maria
Glad you're feeling better Elaine, and I hope that good health continues all the way through your next trip!
Twenty-three days! Where are you off to?