I'm always reading on here about flairs and it seems most people have them and know when they have them. I have rarely in my 5 years of diagnosed SJS known when I am in a flair. I take meds and have since the beginning. They are the regular ones, not the big guns...Plaquenil. MTX, Lyrica, Nexium and a few others. I cannot get out of the feeling of NO energy. When I was having cancer radiation 4 and one-half years ago, after my first radiation treatment, all the energy went out of me. I have not been able to regain it. I stay in bed or on the couch most days and may get dressed about 5 pm. My poor hubby lives like he is alone here. He does most things for me and around the house.
I can with utmost trouble, get up the energy to go to the dr. It's taken me awhile to do this and for awhile I was rescheduling 3/4 of my appointments because I could not get out of bed. I also can get myself together to go out to dinner once a week or so. Sometimes it's just Wendys so I don't have to clean up. Sometimes my hands hurt so bad, I plug in the electric blanket to warm my hands and the rest of me. I've been anemic somewhat, but my bloodwork is usually ok. I have a long-lasting UTI that we are working on.
On an occasional rare day, sometime in the afternoon, I might get myself up and get dressed and watch tv or maybe go to the drug store etc. I usually don't realize I'm feeling pretty good until afterward. I think alot of my stuff happens during the night and I wake up like a cow that's been hit by a car. I have been working with my GP and antidepressants a bit and it's only one week and I notice I'm talking alot. (weird-I can talk a lot, but this is even more.) I am going off effexor and staying on Seroquel and adding Zoloft. I am doing it slowly. It was my idea to try Zoloft again because I was on it for a long time, but about6 years ago and I stopped it on my own. It will take a bit to see what this might do.
I have two knee replacements. One 9 months old and the other 9 years. The older one has to be redone, but at my discretion. Darn, it still hurts when I do stairs. My knees are creaky, but walking is better. I am weak in my leg muscles, but not usually pain in my knees when I walk. I am venting here, but I'd like to know when I am having a flair. If I am in bed for several days, is this a flair? I basically think I just have different days like others, but no real flair. But then again, can you have SJS for so long without a flair? I do know my hands are involved when I am sickly and no energy. I'd appreciate your words about me and my non- or not-flairs.
Lucy
as you know i have no experience to offer you so i will just let you know i have read your post and i sympathize .. hugs Lucy
For me, I usually feel sick most days and have alot of your symptoms, but when my really bad flares hit, I can tell immed. I feel toxic inside, like someone just injected me with a poison or something..like you have a bad infection in your body somewhere?...I usually have extreme dryness all over, stomach really starts bothering me, no appetite at all, feel feverish, and cant do anything...get out of bed etc. I also notice I lose more weight and get more emotional..of course, the joint pain, and extreme headache (like a migraine) I should mention. This usually goes on for at least one week. I take more medrol and motrin/tylenol to try and help....
You may just be having the standard sjogrens symtpoms as well...plus, maybe some depression. Its very hard to figure this out.
Have you been to see Dr. B. lately? I have her send lab request to my nearest quest sometimes to see if anything shows on my bloodwork..like
elevated levels of something that may indicate a flare? email me if you want more info ok?
take care sweetie
Gursie
Hi Lucy, I too am new here and just learning so much. My health over the past year, the year without a rheumy has just been a mess. I am so happy to have found this site. Everyone here is wonderful and you will get the help and support you need.
((Hugs))) and I hope you get relief soon.
EllaBlue
I don't have flares. Not everyone has them. Most of the people on this board are a lot sicker than the average sjoggie.
Have you had a thorough hormone workup? If the radiation beam wasn't properly targeted it could have taken out unintended targets.
Hang in there -- there are still lots of things to try.
Sharon
Poor Lucy, I'd say you were in an all time flair with all that going on.
I think my flairs would be when all my problems occur together.
Thats when i just want to go to bed , be snug and sleep!
Forunately that doesnt happen frequently, but thats my answer to your query,
hope you sort it Lucy, or that when you are in a flare, you dont know it.?
Bless, Dolly x
I agree with Dolly. If you don't have the strength to get to a doctor's appointment, I would say you're in a flare. I'm glad you have a nice husband to help you. Hang in there Lucy!
My flares occur when I overdo it. I feel total exhaustion and then will feel feverish. My joint pain will flare at the same time and my muscles will hurt.
I hope you find the key for you to feel at least SOME better!!!
You know, sometimes when I feel extraordinarly awful, my body feels like it is pulsating with inflammation. I do not mean the needles and pins thing. It isn't neuropathy as I do have that and it's way different and I know what and why and where my neuropathy. A few months ago, I had elevated SSA B and I was likely in one of the times when I feel like I'm going to explode. Don't anyone come near me with a needle or knife. Lucy
Lucy, It would not surprise me one bit if that chemo that you went through just did a job on your poor autoimmune ridden body. I can imagine that your starch was taken out of you and didn't come back.
Those weak spells sure could be sjogrens, however, when you speak of the days your Blood work is high and those exploding feelings, I can just imagine that you feel like your body is being over run by aliens.
It is so hard to sort depression and fatigue out as they can overlap. Also, the fatigue of autoimmune is almost indescribable to someone who has never experienced it. Saying that we are "fatigued" or "really exhausted" just doesn't do justice to what we go through, does it. Hope you can get to feeling better. Take care Irish
I want to come get you, drive to the coast, set up my canopy, and just sit at the waters edge with you and let you feel the breeze and the waves roll over your feet.
I want that for you so bad.
Thanks all for the good words. @Irish, I'm sorry but I must correct either you or myself and say it was not chemo I had with my b. cancer, it was radiation. I must correct that because it's easy to get them confused and some have both. I had rads and after that first day, I was no longer myself and it's been awhile, years. I may never be me again, but I guess I'm getting used to that, or not. I think when I'm in bed for days and most weeks it's more days than not I'm flaring. Lucy
Quote from: jazzlover on August 04, 2012, 04:49:40 PM
My flares occur when I overdo it. I feel total exhaustion and then will feel feverish. My joint pain will flare at the same time and my muscles will hurt.
I hope you find the key for you to feel at least SOME better!!!
That's how mine are.