I've had a positive ANA test (1:320, homogeneous) and symptoms of various joint pain (but no swelling), so my family doctor has referred me to a rheumatologist with a suspected diagnosis of SLE. Since then, and having done some reading, a few things are starting to make sense. My hairstylist mentioning spots of alopecia, my constant red cheeks, various rashes when out in the sun, fatigue etc.
My question is more relating to aches and pains. I've dealt with… read more
I went 5 years with pain and everything was "normal" then getting blown off. It wasn't until they did a CT scan for something else that they found scarring on my kidney and nodules in my lung, and a new doc, that my pcp decided to look further. I had recently found out my biological mother had RA. Everything combined, she ran the ANA test. Since then things have gone downhill. Fatigue, pain and muscle weakness have become my life. When I get frustrated, my daughter tells me I have to remember I can't do what I used to. It is so hard to rely on others for help. I have always been very independent. I usually start making a list of questions a week before my rheumatologist appointment that I want to ask my doc. Between that and using the resources like lupus.org, I can find ways to deal with things. Knowledge is power. Just be sure you stay away from sites like webmd (that will have you convinced you are dying tomorrow) you can find a lot answers.
I was diagnosed with Lupus in 1983, at the University of Miami medical school. My Dr. was the head of the Department, but at that time there very few Dr who understood Lupus and I got better so I put it on a shelf and forgot it. I was a new FF/EMT and had to bust my butt to become one of the first women to achieve that goal and I wasn’t walking away from my dream career. For the next 15 years I would get really sick, but when I brought up Lupus I was treated like a nut so I gave up twenty years ago. This last six months have been hell with none stop breathing issues and pneumonia. Now I’m in stage three kidney failure and started treatment for the first time in 33 years. I should have been more forceful about treatment along time , so stick to your guns, you know your body and what is right or wrong for you.
We women tend to be strong and determined that nothing will get us down. Lupus has a way of bringing reality into our lives, i.e. that we are normal human beings and have the normal challenges but those of us with lupus the reality is we have far more challenges than many people. My sister said to me 'Stop trying to be super women and minimize your lupus, it's a horrible thing to have to live with. My daughter says "Mom, It is what it is and people need to know you're vulnerable and you have to accept your limits" this was after I stupidly climbed 87 stairs and nearly collapsed afterwards because I didn't want to ride with the other old and sick people in the elevator!!!! LOL We need to let people know we have limits and not be ashamed of the fact.
There is so much truth and good advice here in all the responses. Years ago I told my doctor that plaquenill had saved me. He was glad my lupus was controlled (not any more) but said, “we can treat the disease but really it all just depends on what your immune system decides to do.” We can still get “unrelated” illness like flu, colds etc but we have to be more careful as often our immune systems are so busy worrying about the wrong things that they aren’t protecting us where we need it.
I try to eat healthy but am not fanatical because I’ve not found it makes a difference. Most important for me is to do my best to avoid a lot of sugar as it is so inflammatory and weakens muscles. Exercise, stretching. Walking all help me even when it is painful I eventually loosen up. Find ways to keep your spirit up. Constant pain is exhausting and we just can’t give in. Afterall, this is our life.
I can vote personally for me on cbd products helping ease symptoms but never eliminate. So to answer the question of the post, how do I distinguish where my symptoms come from? I honestly don’t know! What I can say for me personally what helps them- don’t drink in excess, do keep exercising and stretching- yes change it up so you don’t push yourself into collapsing depending on how you feel day by day. Don’t quit- days I quit I don’t get out of bed. Never quit. Push yourself within reason. Don’t be a superhero like I tried and spend your day in worse pain than you were trying to prevent lol.
Find things that work for you. Drs only know what your labs say and what comes out of your mouth. They make their best educated guess on these factors. So honesty is important. Being expressive, giving examples and being direct are your best bet. Don’t gab their ear off but get your point across. If you feel like you’re not being heard or they want to try something you’re not comfortable with, say it, ask for an alternative. Stay true to yourself. Realize nothing gets solved over night, patience is hard.. but.. this is our life now. We just have to live it as best we can. Good luck on your journey.