I have not had a great day so have been avoiding creating a blog post but I’ve gone past into the “this is ridiculous” zone and so should be able to inject a bit of humour. If it doesn’t come across feel free to convert every full stop into a smilie.
My Rheumatoid Disease means I need to be very mindful of pain. Not just location, not just severity, but the type of pain. Pain as a result of trauma or inflammation is likely to result in damage and the sooner I can intervene the better.
So far so easy to understand.
However RA is not limited to the joints. It is systemic which means I can often attribute a pain symptom to something else and miss an opportunity to intervene.
Right now I am covered in small patches of welts caused by activity in my skin. I have nodules which are very well documented in literature, but I have been ignoring itchiness as a warning sign of activity. These welts last for months and only respond to steroid cream.
This is not psoriasis, though PSA is a related autoimmune disease.
It could be vasculitis which is bad so I’ll need to have them looked at. Do not google it. Really, don’t. Mine is not as bad as the images you’ll see immediately. There are some that it does look like- if you have ever grazed your knee on gravel it is much more like that, about the size and shape of forming an o with thumb and index finger. But a lot of them. Mine are very itchy, and I tend to forget that they are not just like regular itchy bites. They trigger it to be fair. But so has resting my elbow on my chair.
So itchy is a neurological and immune interaction that I need to add to my list of Things To Look Out For.
Fibromyalgia has been a very exciting layer of complexity. All the recommendations are pretty much the opposite of recommendations for RA. Which has meant learning the very specific causes of my different pain signals.
Muscular back pain usually triggers a bruised sensation in my skin. Other times and places it is burning, other times I get stinging like prickles.
These are not purely different flavours of pain they indicate what kind of intervention I need to employ. The bruised feeling starts to wrap around to the most common trigger points in the collarbone and hips and from there usually I have a very small window before I wind up with breathing issues and cramping. I think that these mixed up signals are related to fatigue; if they usually get particularly bad they lead to full limb cramping and a panic attack from that. It is very scary as the cramping pulls fingers and toes backwards far enough to hear cracking. This the panic and thus the escalation.
So while I do agree I have fibro I cannot just think the pain away but instead work out what the signal really means.
I can usually ignore the ghost pain in the toe I broke. That is very definitely a sensory illusion and one I can use CBT on very easily. The prickles and raw feeling is one I haven’t fully understood but it is easy to avoid when it starts as it is a touch response and only on specific patches.
The bruised sensation is triggered by touch and if it lasts only a few seconds after I can usually hydrate, stretch, move. If it lasts for minutes I have to apply heat immediately and rest. Or it will last for hours or possibly days.
It is very weird. And figuring out these patterns took a long time. And a lot of experimenting because none of this is in any treatment plan that I have seen. Not traditional, not contemporary, not alternative, nothing.
So this is a case of trusting the body but also learning how to interpret various signals.