Pain Question

I get lower back and knee pains. My left knee itself is all kinds of messed up, that I actually walk with a mild limp.

And none of this has to do with DID, I've just done a loooooot of really dumb $#%^ growing up, and still do.

Wow, be careful with yourself, Mr. Bates

Can't stand still on stage when I play music, gotta bounce rapidly on my bad knee and swing myself around the stage. Go home, lay down, can't move, body hurts too much, don't care cuz I feel like a rockstar

Well, okay... as long as it's worth it

Sorry it took a while to reply properly. We get lots of pains... joints, constant migraine (like every single hour of every single day), chest, back, you name it. Never considered it could be abuse related but Mara's mum had suggested that we may have fibromyagia. We had tests for arthritis, ruemathingy thing but they've all come back clear. So... the pains we feel (which sometimes make it near impossible to walk) are apparently normal aches and pains.

aaaahhh good old NHS.

-Ker & Josh

Yep. We have severe fibromyalgia, chronic myofascial pain syndrome, and rheumatoid arthritis (not related to the cause of the other two). From therapists, to our psychiatrist to rheumatologist, they all believe our fibro and likely the CMPS were caused by being an abuse survivor. I guess, the way I look at it is that, when you're abused in whatever fashion again and again to a point that your mind splits off, but that doesn't stop the abuse either... that's got to affect a person down to a molecular level. When enough is enough, the body tends to revolt.

-Mikaela

canolime wrote:But how do you know if something is a body memory? I have so many things all the time, coming and going... it's a little confusing The pain does get worse when I'm upset, but maybe that's just because I tense up...

Fibromyalgia pain tends to stick around for a while. Body memories only last so long. The pain absolutely would get worse when you're upset. Stress and anxiety are huge triggers for fibro.

You need to see a rheumatologist. They're expensive though. So are the meds which are hit-and-miss. (We've never found one that helps, but a LOT of people do find something that helps.) If you do get in to see a rheumy, bear in mind that diagnosing fibro is a process of elimination. There will be a lot of blood tests involved. Maybe an EMG and MRI, too. They need to rule out Lyme disease, MS, Lupus, peripheral neuropathy and things like that. It can be a long process, but definitely try to get into a rheumy and NOT just a regular doctor. Regular doctors tend to not believe in fibro. (I think they should be made to live with it for just one day. They would change their minds so fast!)

Whoever said the cause of the pain is unknown... it used to be unknown. A study in France proved that the neurons that send pain signals throughout the body when we get hurt are screwed up in people with fibro. and so ours just go off all the time. Now the original cause of this misfiring of the neurons is unknown but believed to be a physical manifestation of trauma in a lot of patients. But in the others, who knows?

-Mikaela

mosaicmonkey wrote:Sorry it took a while to reply properly.

It's okay

mosaicmonkey wrote:We get lots of pains... joints, constant migraine (like every single hour of every single day), chest, back, you name it. Never considered it could be abuse related but Mara's mum had suggested that we may have fibromyagia. We had tests for arthritis, ruemathingy thing but they've all come back clear. So... the pains we feel (which sometimes make it near impossible to walk) are apparently normal aches and pains.

Ugh... all of that can't be normal Normal aches and pains aren't supposed to limit you like that. I'm sorry, guys

mosaicmonkey wrote:aaaahhh good old NHS.

Indeed

TwilightInsight wrote:Yep. We have severe fibromyalgia, chronic myofascial pain syndrome, and rheumatoid arthritis (not related to the cause of the other two).

Sheesh, that's no fun

TwilightInsight wrote:From therapists, to our psychiatrist to rheumatologist, they all believe our fibro and likely the CMPS were caused by being an abuse survivor. I guess, the way I look at it is that, when you're abused in whatever fashion again and again to a point that your mind splits off, but that doesn't stop the abuse either... that's got to affect a person down to a molecular level. When enough is enough, the body tends to revolt.

Makes sense I have a question, though: did you always have the pain, or did it start later

TwilightInsight wrote:Fibromyalgia pain tends to stick around for a while. Body memories only last so long.

Okay. Some of the things (like the body aches) never leave, while others pop up every now and then. Thanks

TwilightInsight wrote:The pain absolutely would get worse when you're upset. Stress and anxiety are huge triggers for fibro.

Great... well it sure does

TwilightInsight wrote:You need to see a rheumatologist. They're expensive though. So are the meds which are hit-and-miss. (We've never found one that helps, but a LOT of people do find something that helps.) If you do get in to see a rheumy, bear in mind that diagnosing fibro is a process of elimination. There will be a lot of blood tests involved. Maybe an EMG and MRI, too. They need to rule out Lyme disease, MS, Lupus, peripheral neuropathy and things like that. It can be a long process, but definitely try to get into a rheumy and NOT just a regular doctor. Regular doctors tend to not believe in fibro. (I think they should be made to live with it for just one day. They would change their minds so fast!)

Okay. I don't know if I can do that. Yeah, they sure would believe in it if they experienced it

TwilightInsight wrote:Whoever said the cause of the pain is unknown... it used to be unknown. A study in France proved that the neurons that send pain signals throughout the body when we get hurt are screwed up in people with fibro. and so ours just go off all the time. Now the original cause of this misfiring of the neurons is unknown but believed to be a physical manifestation of trauma in a lot of patients. But in the others, who knows?

That's interesting. Thanks for the info! Bad neurons - do your job right!

canolime wrote:Makes sense I have a question, though: did you always have the pain, or did it start later

I really don't know for sure because I don't remember much before my mid-twenties. I do know (from family) that I was often "sick" without a fever. But when I have a fibro flare-up, I tend to be feverish so who knows? Usually fibro. doesn't manifest itself until adulthood though. I know that 6 or 7 years ago I started to have what seemed like a constant flu. It was never-ending and that is still how the aches feel when I'm not in a flare up. I'm in a flare right now and the aches are more like stabbing, hot, ripping pain than just soreness. I don't remember if it got this bad in my early-to-mid-twenties or not, though. Anyhow, I'm rambling... Something was definitely "wrong" with me when I was younger but likely it wasn't fibro. I don't know if I've ever heard of a kid with it, actually. But wow... if kids can develop it that would be so horrible. It's bad enough as an adult. Though I know two little boys with Jr. Rheumatoid Arthritis (JRA) who raise money for research and stuff. Kids are awfully good at dealing with stuff like this. Maybe us adults are the babies.

-Mikaela