Sunday, January 24, 2016

Disease combinations = confusion and lack of support

When you get a disease, you learn about the symptoms, treatment, and when you will feel better. Add a second ailment and things get confusing. I was told I had rheumatoid arthritis and fibromyalgia about the same time. And I have osteoarthritis too.

I was also told it can be hard to tell which ailment is causing which pain. I can tell sometimes - when a ribbon of pain rushes across my back, that's fibromyalgia. When my knees grind as I walk down the hall, that's osteo. When my fingers decide not to cooperate, that's rheumatoid. When I need a nap, that can be fibromyalgia and/or rheumatoid.

But then I look for support - medical and emotional. The medical support is usually fairly good but then sometimes I get told 'you need to ask your doctor for that other ailment about that'.

And emotionally, I dig around to find people like me. I have found a support group for those with chronic pain but its not that convenient for me. I found a fibromyalgia support group and don't really like how its run. (Its run well, but its just not run in a way that works for me.) I was just told about a new support group for people with chronic illnesses (and told that unfortunately I am eligible for that one too) that I may try.

I have also looked around for medical resources and bloggers who are like me. I frequently find medical articles and studies on one ailment but not on people with more than one. I know most medical research is done focused on one ailment but there must be more people like me. I haven't found any really.

I did find a study that states that if you have breast cancer or thyroid cancer your risk is double (or so) for the other one. I know of two people (besides me) who have had both.

My complaint I think (if its really a complaint) is that the medical world is not set up for people with multiple ailments. Its really designed for one ailment at a time. If your treatment changes you need to wait for that medication to kick in before you can go on to the next ailment. This can takes months. Most RA treatments take three to six months before their impact is felt. So that leaves me stuck in pain or cranky. Or just confused and isolated.

No comments: