[LupusCat50]

Having lupus, fibro and OA makes it very difficult for me to determine just what chronic illness is causing me trouble. I never have a day without pain, fatigue, foggy brain, etc. So how does one tell if it's the lupus or the fibro?

 

[willow]

to be honest, half the time i can't, but if i am really struggling, i get my gp to do bloodwork and that will let me know pretty quickly which one it is.
*hugs*

 

[sadieone]

Cathy,

Having lupus, fibro and OA and 2 slipped disks makes it very difficult name what is making you sick that day.

I don't even try to identify one or the other. Because as soon as you indentify one the other rears its ugly head to haunt you.

Since i'm in pain every day i just say its a good day or a bad day and leave it at that.

Now if i had to say for whatever reason what was really bothering me right then and there i would have to stand up walk around and meditate on that one as I try to block it out most of the time.


But for future reference i call it, IT. It hurts today to walk sit, stand, or it just hurts.

Question,, have you ever told someone all of your diseases and have them look at you like u were dying or lying?

 

[LupusCat50]

Yes, Sadieone, all the time. On the outside I just look like an overweight, 50ish woman who is healthy. This is really frustrating because it's hard to explain to them.

The other day a lady in my office was critizing a man, whose wife works where we do, who had been dx with Cancer about how he seemed to just accept what the doc said and has gone down hill very fast. She's very religious and keeps saying "don't claim it". Well, I listened to her for a while and then I looked at her and very calmly said "Well, you've never been told that you have a disease that could kill you. And until you have you have no right to say how someone should react, because you haven't been in our shoes". She continued to try to get me to see her point, but I insisted with my views. The next day she came into my office and said she was sorry, she didn't mean to sound like she was "downing" me or implying that I had "given up". She knows the struggles that i've been through for the past 3 years and knows that I'm not "faking it".

I get so tired of trying to explain why I can't walk straight, or why I can't go out after work, or why I'm so quiet all the time.

Otherwise, I guess I'll just accept that it could be any one of the illnesses and it just doesn't matter; however, my rheumy insists that the lupus is under control. I just wonder some times if he is just placating me or if I'm losing it. I'm in pain all day, every day and the only thing he will prescribe for me is Darvocet. I might as well take a drink of water for all the good that does me. He makes me feel like I'm a drug seeker so that I've quit asking and even telling him about things that have happened between appointments. I just feel there's no reason to mention anything, he doesn't listen anyway. Maybe it's time to find another doc.

 

[Raglet]

Question,, have you ever told someone all of your diseases and have them look at you like u were dying or lying?

to be honest, if I tell people what is wrong with me, they always believe me. I guess it is because lupus has made me look physically different - I more usually get people asking what is wrong with me which drives me nuts, as I don't want to have to explain it all to strangers. People often ask if I have this or that disease, and I just go along with it because I can't be bothered. When really pushed for an explanation I tell people I have a neurological condition and change the subject. Nobody has every heard of NPSLE and honestly I don't want to have to explain it 10 times a day.

I am just so sick of having to explain stuff when all I really want to do is just get on with whatever I am doing.

but, we are all different, and I do realise that most people's lupus doesn't make them look physically different the way mine has.



regards

raglet

 

[sadieone]

Cathy,

Don't give up.

I kept telling my docs that i was still in pain and they kept trying to offer me narcotics. I refused,, but kept asking. Finally my my gp put me on cymbulta, it is good for fibro and it has been working. I'm able to get around without a lot of the muscles fatigue for 90% of the day.
I can walk up the stairs without stopping in the middle or at the top of the stairs. This is how i measure my success. So i started walking on the treadmill because now they tell me i must exercise more or they will have to put me on more meds.

Now, this does not stop the flares that we will get, so i discovered.. Right now i'm in a flare and nothing they gave me works for that, just plain old rest and patiences that it will go away soon.

So hang in there Cathy, we are with you in this lupie fight.
Somehow i think it is making us stronger.
Just take one day at a time,, Don't push yourself and if you can't do it today you can try again tomorrow. No worries Mun
Take care

 

[LupusCat50]

Raglet, I understand where you are. It sometimes feels like we are the illness and ourselves get lost. My mom, after she had her stroke, would get so mad when people talked about her, in her presence, as if she weren't there, like she ceased to exist because she had a stroke. People begin to identify us with our illnesses. But me, I look healthy I just have problems moving.

Sadieone, thanks for the encouragement. I know I need to exercise; however, I find it very hard with the pain, fatigue etc. I intend to strive to do more.