Hello,
After seeing 6 internists, 4 rheumatologists, 2 pulmonologists, 1 endocrinologist, a chronic fatigue syndrome specialist, an immunologist and a gastroenterologist, I finally have a reason for why I have been sick for so long. In addition to the docs, I had 4 chest x-rays, 2 chest ct's, sinus ct, pituitary mri, bronchoscopy, endoscopy, and a colonoscopy.
One doc told me I just need to exercise. ( I wish he was right - that would be much more simple).
I finally found a wonderful rheumatologist who after listening to my symptoms and story, said it sounds like Sjogrens. Thank goodness for this doctor. I have been on Plaquenil for 2 months and am starting to feel better. I have hope again!
I have been absorbing as much info as possible from this forum and it has been extremely helpful.
Thanks for listening and letting me vent!
Hi Sparkle. Congrats on the rheumy! So glad you're feeling better already on the Plaquenil! That's great.
SIX internists????!!!! WOWIE WOW!
Hi Sparkle!
I must admit I had to chuckle about the "exercise" thing. Drs like to tell us to lose weight and exercise and we'll be just fine. My dr recommended "exercise" not too long ago for neuropathy in my legs. I told him that i do water exercise and walk a mile several times a week and he shut up then. Lucy
sparkle
so sory to hear its taken to many procedure and cos to DX SJS such a common take :(
Glad you finally got a good rheumy who is prepared to treat you, and glad you found this forum, lovely ppl here and great support and advice, sorry it is SJS, but glad you finally have all the pieces of the puzzle in place now, tc you and look forward to seeing you aroung rhe forum
T x
Hello and welcome Sparkle.
Unfortunately your experience isn't unique, but you've stuck it out and got the prize... a rheumy who knows what's going on and how to deal with it! I'm so glad you're starting to feel better.
It's great that you've found the site helpful, and that you keep enjoying it...we're good listenter, and venting is not just accepted, it's approved, because we know it's one of the very few places that people understand what you're venting about!
Hi, Sparkle. I was intrigued by your statement that you have "felt sick for so long." Can you tell me in detail how you had been feeling? I'm curious because I 've also feel really "sick" for about six months, but not like I want to sleep. More lightheaded and weak...
Welcome,
Babs
Quote from: Babs659 on April 10, 2009, 04:35:55 AM
Hi, Sparkle. I was intrigued by your statement that you have "felt sick for so long." Can you tell me in detail how you had been feeling? I'm curious because I 've also feel really "sick" for about six months, but not like I want to sleep. More lightheaded and weak...
Welcome,
Babs
Babs, I don't really feel tired either. When say I feel sick, I feel like I have a fever even though my temperature is normal. I would find myself taking my temperature all the time. I guess you can say it feels like I have the flu.
Do you get lightheaded when you stand up or is it constant? When you say weak, how does it affect you?
Hi Sparkle :)
Welcome to Sjogren's world.
I'm glad the Plquenil is beginning to help. I found it took about 4 months but it did make a difference. I hope you find the site useful.
Take care - Scottie :)
Hi and welcome Sparkle. Glad that you're finding some relief with the plaquenil. I'm soon ready to accept that plaquenil is doing little for me after 9-10 months. enjoy yourself here.
Dave
"Babs, I don't really feel tired either. When say I feel sick, I feel like I have a fever even though my temperature is normal. I would find myself taking my temperature all the time. I guess you can say it feels like I have the flu.
Do you get lightheaded when you stand up or is it constant? When you say weak, how does it affect you?"
[/quote]
Sparkle, I am lightheaded mostly when I try to walk, but sometimes when I am just sitting. I really feel it when shopping or trying to do any exercise. I also feel like I have a fever or the flu. The weakness is like I've had half my blood drained from me. My arms and legs feel heavy, wobbly and weak, and my walking feels uncoordinated. My head feels weird, like I have a sinus infection, but I don't. It's good to hear someone else describe my same symptoms, because I have myself convinced there is something else horribly wrong with me.
Hi Sparkle and welcome to Sjogrens World!
I'm glad that you finally found a good and open minded rheumy who is actually helping you! Yahooo! Its also good to hear that you have already found the information on this website helpful to you...glad you found us!
Yes , yes, yes...I have heard the exercise speech too.....and like you I wish it were that easy! ;D
Thanks to everyone for your replies!
Babs, your are not alone with your flu-like/ fever feeling. That is the worst part for me. I can function when the malaise lifts, but when it is here, it is hard to get out of bed and it is depressing to feel so miserable all the time. I am still getting used to the idea that this is a permanent condition. It must be so hard for you to function when you feel lightheaded and weak. Do the docs have any explanation for why you are lightheaded, it or is it just a symptom of Sjogrens?
Hi, Sparkle. My rheumy does insist the Sjs is to blame for how I'm feeling, but I wonder if I should have some tests for MS. The only thing that makes me think it IS Sjs, is that I feel pretty good as long as I'm lying on the couch doing nothing. I do not have a hard time getting out of bed in the morning. I feel pretty good until I have to go walk the dog---then I start to feel "woozy". Also, any emotional stress brings on the same whoozy feeling. Last night at my Father-in-laws I felt okay at first, but his family is very loud and there is tension. After a couple hours I felt really bad and we had to leave. I felt very feverish and weak. It was an extreme effort to cut the turkey because my arms were so tired. When we got home I just rested on the couch and after about an hour I felt a lot better. I don't know much about MS, but I think that part is more like Sjs.
I hate to go on and on, but I'd really like to know,
do you feel just like me??---horrible when too active or stressed but better when you rest a bit?
(still waiting for the Plaq and Medrol to kick in)
Babs, I can relate....I definitely feel worse when stressed and get that feverish feeling. Sometimes when I get sick, if I lie down for a few hours(not sleep) it helps a lot. I don't know about MS, and hopefully your rhuemy is right, but if you are a little nervous about it, and thinking about it causes stress, can you get evaluated by a doc that specializes in MS? Maybe if you could rule it out, it would help?
Sparkle, as a matter of fact I went back to the rheumy Monday and told him I'm still lightheaded and my husband says I'm very forgetful and having problems with speech. He became very concerned and told me to stop the Plaq, continue the Medrol, and he sent me for a brain MRI with contrast. On the prescription, since he must write a possible diagnosis, he put CVA (stroke) and acoustic neuroma. I'll know the result in a day or two......