I’ve had a couple of very good days where I managed to be have 4-6 active hrs for about 3 days before I even got uncomfortable. Today on the other hand I’m stiff sore freezing exhausted with a cough I’m fighting to keep my eyes open! I go to my 2nd Dr appt this evening and honestly until this morning I started thinking hmm… Maybe it is just in my head and I’m gonna go to the Dr and hear your fine. Today on the other hand I am too tired to even get dressed. I don’t know what to think . is this “normal” with lupus?
We sound a lot alike! I had my oncologist appointment two days ago and I was certain my bloodwork was going to show something wrong because I was so tired and my legs hurt so bad. But, everything was fine, so chalk another one up to lupus weirdness. I had a very productive couple of weeks up until a day or two before my appt. Take care fellow lupie! Gentle hugs.
Right now I am fighting through a very hard time. I am lucky to get about 3 hours in day to be able to do something before the debilitating fatigue sets in. When I spoke to my dr. about it he replied that it is part of the disease. I am hoping with time my energy level will get better. When I think back to a month ago I do notice an improvement. Hopefully you will get diagnosed soon and started on medication. The sooner the better. Good luck and keep us informed.
::hugs:: Oh my YES, this is totally what Lupus pulls on all of us. Bad enough to know folks are likely to doubt us about being sick, but when our body tries to act like everything's fine, then pulls the rug out from under us... ugh, Lupus is a cruel trickster.
Unfortunately, it's very common to experience a dramatic roller coaster of symptoms. It's highly frustrating. It makes it nearly impossible to tell whether you should think you are getting better or getting worse. Sometimes for me it just all kinda ends up blurring into one big ball of misery, even if I HAVE had good days. Hang in there, take good care of yourself, and don't ever let your doc, your friends, or even your body convince you that nothing is wrong. This is NOT all in your head! ::more hugs::
Thank you all very much! Good to know I’ve not completely lost my mind! I go at 6 tonight he wanted me double booked but I think its because I told him I often had worst symptoms later in the day, I have ten new bruises with NO explanation and I had a whole can of peas for lunch because nothing has taste other than weird things I never eat lol. Thankfully the Dr I picked is wonderful at understanding and not labeling me as a hypochondriac! I’m so anxious to see what my bloodwork shows =) hugs to u all!!!
Ups and downs is the norm. Try not to overdo on the good days. I find if I overdo I am bad the next few days, so my motto is "pace yourself"
Take care everyone.
Cindy
Don't ever think "it's just in my head." It's so awful when you feel too sick to even get your clothes on to go to the doctor. And when the doctor walks in the exam room and asks how you are, don't just say "fine." Speak the truth, "not good" "very ill" "sick and I hope you can help me with______" How often are we our own worst enemy! In my mind, "normal" with Lupus is all over the place! Take care, Chasity and believe in yourself. All the best, Lupancatwoman
Hi , this is part of hav in g LUPUS. …BEVERLY L.
This is what lupus does. your feeling good in the morning and by midday you're exhausted and the only thing you did was make the bed, my days run that way sometimes, I've learned to just do what I can when I can, when I can't I don't. it took me a lot of years to get to this point, I hope you get to feeling better soon,
I feel your pain. I will have a good day, followed by a bad one. I am only able to do something a couple of hours a day. My hubby says it is because I don't try hard enough and don't exercise. I am torn as to what I should be able to do.
I do what I can.
What you "should" be able to do, quite honestly, is between you and your doctor, and sometimes not even that. My doc has told me that exercising and stretching could help my SI joint pain, so I'm finding a way to make it work. My 'exercising' may not be what most people would define it as, but that's okay. I do five minute stints on our eliptical, taking it very slowly, and do that whenever I feel the urge or up to it through the day. This past week, the most I've been able to do is three times in one day. But that's okay, because that's what I can do, and that's better than not.
My point is, do what you can do. Don't let anyone, even those closest to you, tell you that you don't try hard enough. Tell them to strap ankle and wrist weights on with needles on the inner surface, then have THEM do their normal day and exercising, and THEN they can consider what it must mean to "not try hard enough." No one can tell us what our pain is like, and no one can tell us what we "should" be able to do. Not even other Lupies. We are all different, we are all individual.
PoohP said:
I feel your pain. I will have a good day, followed by a bad one. I am only able to do something a couple of hours a day. My hubby says it is because I don't try hard enough and don't exercise. I am torn as to what I should be able to do.
I do what I can.