Quote:
Originally Posted by Juniebear
I hate that question at the doctor every time... "what type of pain is it burning, stabbing, throbbing?" I don't know!!  I never know what to say to that. It's all and none of the above. My pain is just there. What do you say? Sometimes it feels like I'm being jabbed with a knife, sometimes bee stings/bug bites, tightening pain? Pain in my legs now is like somebody is sliding a hand under my calf muscle and peeling it off the bone... but squeezing it too. I just don't know what to say anymore.
So frustrated with all of this. Some days even I have pain but then I'm not 'sure' about it. I don't know if that makes sense. It's like I'm getting so used to the pain I'm just not that aware anymore of it.
Also being asked the degree of pain 1-10... well, I don't know what to say there either. One moment it'll be hmmm, a 4 but then the next it's a 9. Then, try and think what I'd gauge it before all this hell started and can't tell.
Frustrated and losing hope that I'll ever know what is wrong or get a diagnosis. I don't want to live the rest of my life like this with no answer. Just a fog of pain and fatigue. Seeing doctors who I feel aren't listening or don't believe me.
I've been tested for everything under the sun and it all comes back 'normal'. My MRI's are "pretty good", one lesion but only comment ever made on that is that it isn't conclusive. Is it wrong to want a new MRI at this point and hope it's full of lesions just so I have an answer? How warped is that?! |
Its not warped. You just want answers. I have numbness, but can feel pain at the same time. Normally when you think of numb, means you cant feel right? I have a thing where I can feel the outside of my leg, but the inside of my leg by the bone I cant feel it. Neuro explained stuff about different nerves being on the outside of the leg from the inside of the leg.
MS is a very difficult disease to dx. As far as describing your pain, I can sympathize. Ive been there, still am there. Sometimes feels like pinching or a pin being dragged across your skin, etc. You just have to describe as best you can. We've all been there.
Sometimes I just throw my hands up and say I don't know how to describe it doc it just hurts likes you know what. Sometimes you have to average out your pain. Like on average what is your pain like, make sense? That's what my neuro has me do. Not what your here and now is unless your here and now is quite painful.
Are you seeing an MS specialist or a regular neuro? What tests show now may not be the same in 6 months. Keep fighting for yourself. You know your body better than anyone. Lots of support here. Hang in there. We're all here for you.
