Do You Keep A Journal Of Your PsA Symptoms?
I am having the worst flare I have had in 20 years. Every day, it is something different. I decided to track what was going on with me daily. You can write down, how long a pain lasts, and what part of the body is it in. Write down what you think the pain level is. Are you able to move around or get out of bed? These are just a few.
I took my list with me to my rheumatologist appointment. He was very impressed and said that this helped him a lot.
Do you keep a journal of your symptoms or even a list for your doctor? Would like to hear from you.
, good question and I sure do. I'm a paper and pen gal so in between rheumatology appointments (about every 4 months), I jot down anything that I think is pertinent. Then before my appointment, I sit at my laptop and put thing in categories; joint pain, medication issues, flares if any, questions etc.
I print a copy for me and a copy for my rheumatologist. At each appointment he asks for my notes first and reads them before we discuss anything. (I do have an outstanding doctor that spends at least 30 minutes with me at each appointment. I feel so very fortunate.)
I think it saves him time and saves me from forgetting something.Hell
, That is awesome. I never thought about this until so much was going on with me that I would forget things. Thanks for sharing. This is awesome!! We need to spread the word about this. I have a great doctor now, but it took me years to find him.
, my notes for my doctor began as very scattered and scribbled thoughts and questions. I am not necessarily an organized person. Exhibit A - my desk drawers LOL
When I started putting my finished notes into categories, it helped a lot - my doctor and I can cover more ground.
I am so happy to hear that you too have a great doctor. It's such an important relationship. I can't imagine having this disease without good doctor/patient communication.
Hello
, I laughed when I read about the scribbled thoughts and questions. I would write my thoughts on the back of the mail that I was going to open. Most of the time it was junk mail that would get thrown out. I have got a lot better now.
I loved that idea about categories. I'm going to try that. Thanks for sharing some great tips.
Do you do this for all your doctors?, I do but its usually not as detailed for my GP, or eye specialist. I have one notebook dedicated to medical stuff. Seems ridiculous but its a system that works for me. I use sticky note bookmarks for different doctors questions. I have a bit of "white coat" anxiety so this keeps me from forgetting stuff!
I got information from PSA Support Group but it got hard to write down every day. It felt like a constant reminder and I try to enjoy my few good days. I am on IVIG for another condition and it cuts back on my flair ups. I have had this diagnosis for around 10 years.
I relate so well to this, Sometimes I think that a person just does not want to be reminded all the time, as having PSA already takes up so much space in our lives. I do hope that you are currently having a few good day. Sending you a gentle hug. -Clair Psoriatic-Arthritis.com team member I have IVIG infusions also. I'm not sure if they have helped or not. But after 25 years I now use Skyrizi and I had also been using Otezla. My insurance won't pay for either so I get samples from my Dr. They told me they are getting cut back on Otezla samples so they really wanted me to wean off. We'll I did. I actually was doing better than I had been in 25 years.
So now I am off Otezla and although it's not as bad some of the pain is returning. I tried Otezla by itself and Skyrizi by itself. I finally got some relief with both.
I can't understand why, when I have tried every medication I could, that they are refusing to cover either one of these meds. I also had been diagnosed with optic neurititis, a possible precursor to MS. This contraindicated Humira, Enbrel, and quite a few others.
I am so frustrated at this point. I believe my health insurance is detrimental to my health.
As you know the IVIG infusions will need to continue for the rest of my life. I'd be afraid to stop them anyway. Like I said I think they may be easing some symptoms but who knows. I am at the end of PSA meds I can try. I'll take relief from any source it comes from.
Thanks for listening.
I journal pain levels and bowel issues. I am able to gauge whether medications are working based on the number of days that are over my normal threshold of pain. Right now I am averaging about 12 bad days a month.
this is a great idea. And so helpful to keep track of the number of days over your normal threshold of pain. How are you feeling about having 12 bad days per month? Is this normal for you? Or high or low? -- Warmly, Christine (Team Member) Hello
, I like this. I am retired also, so I do have time to monitor my pain levels and bowel issues. I have pain every day, so I need to figure out what days are my bad days versus good days. This will be based on whether can I get up in the morning without going ouch. I am going to start doing this immediately. Thanks for sharing. Is 12 days a month a normal range for you? Diane (Team Member)
