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Old 10-30-2007, 09:56 AM   #1
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Question Dealing with people that don't get it!

I am new to this site and So very happy I found it! I have been diagnosed with FM for 5 yrs. I have dealt with it many years before that since as you all know it takes forever to get a diagnosis. Just recently I was also diagnosed with HMS as well. My wonderful NEW doctor thinks that the two are related.
I said NEW doctor because I have been to so many. I am guessing most of you with FM have as well. I have been to doctors that don't believe it is real. That think it is all in your head. I think that those doctors are uneducated on the subject so the easy answer is that it's in my head! I wish in a sick sort of way that they were right cause then I could go get some therapy and make this pain stop!!!
Doctors aside the hardest thing for me besides the daily pain and everything else that goes with FM and HMS, is dealing with the people that I love and care about, that agree with the doctors that say FM does not exist. I have heard comments like, "You look fine", "How can you do that(whatever I am doing at the time)if you have this pain", etc...It really hurts my feelings and I have no idea how to handle this short of getting my diagnosis in writing and sending them all a photo copy...LOL.
Does anyone else get this type of reaction or is it just me? IF you do how have/do you handle it?

Thanks
Julie

 
Old 10-30-2007, 01:05 PM   #2
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Re: Dealing with people that don't get it!

Quote:
Originally Posted by chickscleo View Post
I am new to this site and So very happy I found it! I have been diagnosed with FM for 5 yrs. I have dealt with it many years before that since as you all know it takes forever to get a diagnosis. Just recently I was also diagnosed with HMS as well. My wonderful NEW doctor thinks that the two are related.
I said NEW doctor because I have been to so many. I am guessing most of you with FM have as well. I have been to doctors that don't believe it is real. That think it is all in your head. I think that those doctors are uneducated on the subject so the easy answer is that it's in my head! I wish in a sick sort of way that they were right cause then I could go get some therapy and make this pain stop!!!
Doctors aside the hardest thing for me besides the daily pain and everything else that goes with FM and HMS, is dealing with the people that I love and care about, that agree with the doctors that say FM does not exist. I have heard comments like, "You look fine", "How can you do that(whatever I am doing at the time)if you have this pain", etc...It really hurts my feelings and I have no idea how to handle this short of getting my diagnosis in writing and sending them all a photo copy...LOL.
Does anyone else get this type of reaction or is it just me? IF you do how have/do you handle it?

Thanks
Julie
Hi Julie,

I didn't have a hard time getting a diagnosis thank God. But my extended family doesn't understand fms and flares. I wore myself out trying to explain a few times but when i mentioned depression, i guess that is all they heard. They just didn't get it all. My husband and kids understand because i had them read some book excerpts. And my closest friends are understanding and compassionate. This helped especially with trying to explain fibrofog.

I don't try to get anyone to understand much anymore. I just say it is a central nervous system disorder that causes pain. It is just too complicated to go into, ya know? There is a St. Francis of Assisi prayer and part of it is "help me to seek to understand rather than be understood." I just love that. It is so much easier instead of me trying to get validation from another person that my pain and fog really do exist. It helps me to remember to focus on others instead of myself. I don't know if that makes sense, but it works for me. I'm kind of foggy today.

If your docs don't understand, get new ones, there are lots of docs out there that are educated on fms. I have a primary, a rheumy, a chiro, and a pain mgmt doc. I read that there is an estimated 6 to 10 million people in this country with fibro and that rheumatologists see more people with fms than with rheumatoid arthritis. That's what i read anyway.

Thanks for posting. By the way what is HMS?

 
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Old 10-30-2007, 07:40 PM   #3
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Re: Dealing with people that don't get it!

Thanks for the reply. HMS is Hyper Mobility Syndrome. The joints are too/more mobile then they should be...Double jointed...Do some research on it, you may fall into the criteria. The Doctor that diagnosed me told me that there are many Central nervous System disorders that are now being looked at to see if they are one in the same, or closely connected.

Julie

 
Old 10-31-2007, 06:42 AM   #4
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Re: Dealing with people that don't get it!

hi julie,
my answer is always the same. i say, i am so fortunate. i have days that are great and i can do anything. not everyone gets that. i smile my best smile and thank them. when someone asks me how i can do that and be in such pain i smile and say, pretty cool, huh? and i laugh my happy laugh.
just the other day i had a client ask if i am always in pain. i said yes. she said are you in pain now? i said yes. she said where? i said every inch of my body. she looked at me and asked how do you do it? i said attitude and adaptation.
for myself i have found the more pain i have the more i can handle. each time i come out the other side stronger and less fearful of pain. we went to lunch and at the end she asked was i in pain the whole time i was laughing and eating and chatting. i smiled and said, yes. know what i saw in her eyes? that look that says if she can do it so can i. can't beat that!
peace,
bluelakelady

 
Old 10-31-2007, 10:24 AM   #5
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Re: Dealing with people that don't get it!

I'm so glad to meet you! I have found that explaining this condition is a waste of time. In the past I have seen roadblocks in the eyes of those I am talking to about FMS to so I don't bother anymore. BUT, to someone else who is suffering, there is so much you can give to them. That is what I focus on.

I believe HMS is linked to FMS. I have HMS also, and I have to be very careful not to hyper-extend my joints. Excercise has helped a lot.

Take care,
Kirstee

 
Old 10-31-2007, 02:27 PM   #6
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Re: Dealing with people that don't get it!

hi there fellow fibro friends, i to have given up on trying to explain, if people want to know i just tell them too read up on it, my x husband is the worse he tells our kids that im lazy and just looking for sympathy, so when the kids come back from spending time with him it takes a while for them, to settle back in.i was out mowing the lawn the other day and a friend pulled up and said i thought you were sick, i told her i was having a good day and i,d prob pay for it tomorrow, she gave me a weird look, my true friends have read up on it and understand. i like to help my current hubby as much as i can .gee that sounded like ihave been married heaps of times lol giggle.so when i can i do his weekend chores , gives him a break . tell your friends too read about if they choose too it,s ok if they dont who cares we have too much going on to be bothered ....

 
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