How Do You Feel When You Are Having A Flare?
The first word that comes to my mind is miserable when I think about how you are feeling when you are having a flare. I see why they used the word flare to describe us when we are in pain. It goes throughout our whole body. I know for me that a psoriatic arthritis flare will have me in a very low place. When I’m having a flare I just want to be left alone.
What is a flare?
First off let’s talk about what a flare is. I have been asked this question several times. You first must know your body. We know when we are in pain and know that we need to act on what is going on with us. I think that we need to listen to our bodies. If you have a headache; you know to take an aspirin and try to relax. You just do it. Our body tells us that something is wrong. Don’t ignore the pain; it will get worse as you all know.
Signs of a flare
- Pain all over the body
- You're tired, but can’t fall asleep
- Brain fog – you can’t remember what to do on a job that you have been doing for 30 years
- Having hot and cold spells
- Your fingers are swollen, tender and in pain
- You're moving slowly or not at all
There have been times that I get flares so bad that I just cry. I have found that talking to people who are having the same problems as I am is helpful though. There are people who do understand what you’re going through. Talk to family and friends so that they can be there for you in this time of need.
The impact of pain
Sometimes I just want to be left alone and handle this on my own time. I know that having a flare is not going to go away overnight. Let people know how you feel and that you want to be alone, to just relax, and focus on yourself. I’m not mad, angry or depressed - I just want some “me” time while I get through this.
Our disease puts a large impact on our lives. We have doctors visits, filling prescriptions, taking shots and pills, putting on creams and lotions, taking different therapies, and through all of these things, we are consumed with daily pain. We have to change so much in our lives; there are some everyday things that I can no longer do.
Different journeys with psoriatic arthritis
We are all different and have different stories. I have had psoriasis for 55 years and psoriatic arthritis for 35 years. I would have thought we would have found a cure by now; but not yet. I think about how my life would have been if I didn’t have psoriasis or psoriatic arthritis. Who knows, life is so unpredictable. We will never know what the outcome would have been without any illnesses. So, I focus on advocating and helping others know that they are not alone on this journey.
Someone said to me once; well at least you don’t have cancer. Please stop saying that, you minimize our feelings. I didn’t have a response to that remark at the time, but if someone said that to me today I would tell them; no I don’t have cancer, but I have a disease that has no cure and it often feels like I am alone. I have feelings of terror and discomfort. My question to you is, “what do you say to the person who does have cancer”? Well, at least you don’t have the "bad cancer."
When chronic pain is misunderstood
We have chronic pain, but our doctors tell us it’s all in our head. I had an associate tell me that her job told her that nothing was wrong with her and that she wanted to get workmen’s compensation. Doctors understand cancer; they don’t understand chronic pain. There are people who do have more serious illnesses, I agree with that, I just don’t think you should downplay our disease or compare it.
I have positive and caring people in my life who help me to stay motivated and positive. I do have my good and bad days with this disease. A flare can come on at any time, so keep your head up and we will find a cure together one day.
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?