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Feeling isolated
3 Replies
Butterfly36 - November 5

I've a fantastic doctor who has spent 6 months having tests run to rule out other possible causes but has recently diagnosed me with FMA & ME. He's very understanding, but my family don't understand. I overheard my daughter telling my husband i should buck myselk up and get on with it which hurt so much, and recently i was trying to explain how i feel to my husband and that there are days i can barely move, but other days when i'm still in a lot of pain but able to do some tasks as long as i rest after. Before i could finish this sentence, he cut me off at when i was about to explain about other days and being able to force myself to do something and cut in with how he discussed it with someone he knows with FMA and said - other days they just feel really great! This reall upset me as he talks to others but won't sit and listen to me or understand that there are no days i can say i feel 'really great'.

 

AP197112 - November 15

Butterfly36 I'm so sorry you are going through this! I must say I never really understood what my dearest friend was going through until I was having so much pain and was finally diagnosed with FM. Now my husband tries to understand but he can't really comprehend it. But know you are not alone and sometimes they have to hear from others to really receive what you have been telling them. It is just like our kids when we tell them something they don't really listen until someone else tells them the same thing we have been telling them. Lol. Maybe have your husband go to your doctor's appointment so he can ask your doctor some questions to help him better understand!

 

dorret - February 13

Hi, yeah, I know what you mean; my caregiver (I am almost 70) says, there's no cure or treatment for fibromyalgia. I asked my doctor to refer me to an "auto-immune disease " doctor, my dumb doctor will not do it!They are SO STUPID IN OREGON. I will probably try to find an auto-immune disease doctor myself,I always have to find stuff out myself.I looked fibro up on the web, a lot of people believe it is an auto9immune disease Its possible, because my dad had one,and the info; said, its often inherited. yeah, a parent may have had fibro, under a different name!!my dad had Epstein-Barr syndrome. I was always scared of getting the same thing; and the symptoms are very similar, which is why now the researchers think its an auto-immune disease. It could be, alright. As far as everyone telling you, you don't fell bad, tell em to go mind their own business, its your body, not theirs. Don't be afraid to get stubborn and take care of yourself, if you have to. Don't ever let ANYONE tell you, what YOU ARE FEELING. If you never feel great, its your business. I am sorry your family is not supportive, but it often winds up that way.People LIKE being in denial. DENIAL is the biggest longest river in the world.

 

Suzetooz63 - May 25

My family and friends do not care and do not help me in any way. I am totally alone and on my own. It is hurtful because I was always there for all of them.

 

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