The Lame Dame

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Posts tagged with "erythromelalgia"

burningweird:

the neuro called my em “under control.

Ok I guess -cannot bend fingers from swelling- is normal and I should just deal then

Sep 4
  • Me: *typing away on laptop doing media homework*
  • Brother: *walks into room*
  • Brother: feel my hands they're like yours
  • Me: *holds hands* oh wow you're right the temperatures are so different
  • Brother: oh your hands are like that too right now
  • Brother: does it affect your feet too?
  • Me: EYEP
  • Me: is it painful though?
  • Brother: nope
  • Me: well I guess you're literally hot too
  • Kind of cool to know my brother finds the weird temperature thing funny too, and I'm glad he doesn't experience to the same level where it also involves pain. It's this sort of thing that makes me believe what I have is genetic and it gives me something to chuckle about
katisconfused:

I made this for an erythromelagia art contest.
I didn’t win (or even make the top 5) out of like 17 entries even though this is one of the better things I have ever drawn :’D
/fail

I think it’s beautiful…..I feel this feel a lot :(

katisconfused:

I made this for an erythromelagia art contest.

I didn’t win (or even make the top 5) out of like 17 entries even though this is one of the better things I have ever drawn :’D

/fail

I think it’s beautiful…..I feel this feel a lot :(

Aug 6

*sigh*

burningweird:

The autoimmune doctor doesn’t think there is anything autoimmuney wrong with me and should just keep focusing on neurology :/

Another appointment of no real progress. I don’t like this outcome because I know the treatments left to try for EM pretty much are:

  1. Different versions of drugs I have tried and reacted horribly to, that will all require ween on/off time meaning every one I test will require like 2 months at least 
  2. Stuff like spinal blocks, which even if they work are going to be completely useless when I get flares on my face
  3. Narcotics. Which seem to work on me, but I can’t really function on them still and eventually they will stop working. Also you know, the whole hassle of even getting any.

So yeah, even though there might be some weird experimental thing I don’t know about that doesn’t look too good to me. I was hoping that maybe I could find treatments from a different angle.

Also the dreaded “exercise” thing came up also. I have like 5 things wrong that get worse with exercise I find it hard to motivate myself to exercise when I know it will result in joints giving out under me, muscle pain, foot swelling and burning, hives, and coughing up this mucus that tastes like blood. I admit the muscle pain is probably worse due to lack of movement but that doesn’t outweigh all the other things, especially when my joints are doing that and I still don’t know WHY. I could possibly be doing permanent damage if I overstress them.

#also I utterly failed at wheelchairing so that isn’t looking like a viable option for me

I’m sorry you had an unproductive visit, but eventually something will stick.