plans and activity

One of the really difficult aspects of both my Rheumatoid and Fibro is that my very specific layers of therapy is not easy to understand or in fact like. I never share to tell people how to treat themselves, only that we all have very different experiences. What helps us all is believing we have tried what we can.

I defy expectations in very uncomfortable ways. There is no link to diet for me as I’m not allergic to anything (always good to reduce inflammation of any kind and that is especially true for food- and there are other aspects that do have an impact and vice versa) but activity can and does trigger it. Which goes against almost everything we are told.

It’s not that I can never walk, or never do anything, its that my limits are quite quickly met. I can’t walk every day, and in fact over the years how far I can walk has shrunk. Again, this is the opposite of what is expected. If I walk even a short distance say three days in a row I won’t be able to do that for more than a week. So every other day, and making best use of that time is much more effective for me. Still not a cure, still doesn’t undo damage.

But that’s because even on double therapy my inflammatory markers remain elevated. It’s very frustrating as often I can do a specific task but then pay for it for anything like a day to a week. Which makes it very difficult to plan yes!

Today I ironed some fabric and I’m a bit sore. In a few hours though that’s going to be inflammation in my jaw, elbows, and hands. So rather than keep going until that point and being utterly unable to do anything for the next few days (and on each of those days I can cause more activity by not respecting the even more constrained limits on those days.) I am stopping now.

I am going to turn my electric blanket on (yes, I am also “weird” that heat reduces inflammation, always has*) and ease my back muscles right now while I have a chance to use minimal interventions.

I don’t use much prednisone now, and codeine is a one off to reduce my chance of a fibro flare.

Whoops. Actually I will as that is very likely indeed.

*Cold constricts small blood vessels, heat dilates them. So there are many theories as to why there is this difference in patients, and RA tends towards if/then in general. If someone is Rf positive they are likely to be anti-CCP negative, and vice versa. If high inflammation, then low erosion, and vice versa. If you have sub-cutaneous nodules, you likely have organ involvement, and if you don’t then likely no organ involvement. So this hot/cold difference might well be another kind of marker.

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