Fibro Challenges Online Support Group

Hi guys,

I'm new to this and new to fibro, so i'm wondering what experiences other fibromyalgia suffers have had and how chronic illness has affected thier friendships.

I ask because I can't tell if it's the fibro and the difference fibro has had on me and my values, or if it's just life but i am really struggling to maintain friendships with people. As it is I only have a small circle of friends and since the fibro it's gotten smaller, alot of people have simply stopped contacting me, once they realised i couldn't go out anymore or do all the things i used to, they stopped calling and eventually even deleted me off facebook. Their have been a few that stayed in touch, but recently i've noticed they only want to talk when they want someone to complain to. I don't really talk about my health with my friends because it's impossible for them to understand and when i do, i get blank looks before they change the subject and prehaps it,s the fact my fibro has gotten alot worse that i'm suddenly noticing they don't seem to want to talk about me at all. But I am i just being overly sensative? my doc keeps telling me how emotioinal and sensative i will become and irritable. I feel like my friends don't care and sometimes it's not even the fibro. Recently I was talking to two of my friends for the 4th time about my brat flatmate who refuses to move out, i was told point blank, we've heard this before and then they proceeded to complain about thier latest boy friend problem which is the same story i have been hearing for no less than 5 years. When i finally got around to telling them i was looking for a 1 bedroom apartment so i can live on my own I was told it was a stupid idea, i should give up all my possesioins and keep just what i can fit into a car and find a furnished share house to live in just like the two of them. My point is, where previously i would have just ignored this comment and do what i want to do anyway. Now that i have fibro more and more i find thier behaviour hurtful and quite frankly i'm not sure i want to put up with it anymore for the same reason i wanna live on my own, i'm to tired, i'm to sick and i'm to irritable to wanna deal with anybody elses drama if they want support mine. I've always been the agony aunt in most of my friendships but i was ok that, i rarely needed someone else to complain to, but maybe that's the problem i never set proper boundaries, i made my self an emotionally available agony aunt 24/7 and now that i need someone to talk to myself, i'm so much less inclined to wanna deal with anyone else crap unless their meeting me dead on half way and are respectful or my time.

I guess what i'm wondering and i hope this hasn't sounded like a pitty rant because that's not the way i meant it, but has anyone else gone through something like this where there suddenly forced to re-evaluate all their friendships? Is my change in attitude a result of the fibro, or has the fibro just forced me to grow up some more prehaps just a little bit faster (i'm 28 btw) Or is this just a natural phaze of life? i've grown up, i like responsibility and i know what's worth it and who's worth worry about, i don't fuse about with men who arn't worth it, or the politics of work, I just live my life and strive to be the best human i can be and make the most out of my life. I might have fibro but it doesn't define me and yea it makes life harder but i make my own happiness and i don't need to give up. I have always lived by a rule 'if at first you don't succeed, change the rules) and maybe that's half the problem i also am increasingly finding thier problems trivial and where once i felt sympathy now i just feel nothing. I no longer respond by saying "ohh huni you poor thing" now i respond with " ok & what are you doing about, and ok but why didn't u do this or that when you had the chance, then this wouldn't be a problem"

I hope this all makes sense and i'm sorry if this sounds a bit to much like a pitty rant, i just don't have anyone else to compare fibro notes with. Oh & if my spellings terrible it's because i lost my glasses. lol

OMG! I was just on http://www.fibromyalgia-symptoms.org/nervous_system.html and this one paragraph, explains so much. OMG so relieved to know i'm not going crazy, i don't have some undiagnosed mental illness

"In patients with fibromyalgia, the sympathetic nervous system functions at an abnormally high level, while the parasympathetic nervous system functions at an unusually low level; this leads to a constant "fight or flight" response. Studies have shown that this constant state of hyperactivity also leads to an increased heart rate when patients are both standing and lying down. Several studies have found that female fibromyalgia patients can have a particularly severe autonomic dysfunction."

I really have lost all friends at work and home. But, because I have a wonderful husband and am extremely close to my two daughters, 20 and 14, it is OK for me...but, if I did not have this support, I would be alone. I also have noticed the fight or flight and emotional issues more and find that certain meds have made me much less inhibited, allowing my thoughts to burst out of my mouth at very inappropriate times. I am in big trouble at work as a result and am in jeopardy of losing my job as a result. 24 year stellar career down the tubes.

But, I understand what you are saying about the impact of fibro on friendships. I find that this forum is a great place to find new friends so you don't feel so alone, though. Hang in there. I care and would love to be your friend.

I understand exactly what you are saying. I find that my "tolerance" for other people is low. On another forum I made people mad at me because someone stated a problem and I automatically told them what I thought they should do when all they wanted was someone to say, "You poor dear." I do not work outside the home but like Kim, I am very close to my daughters and husband. We moved to a small town a couple of years ago and have not had the energy to try to make new friends. I really have no close friends. My best friend of over 30 yrs dropped me when I changed religions. Apparently, I will be burning in hell! LOL

This is one reason I find this forum so important. Other people "get" what we are dealing with.

Thank you So much Kim, you have no idea how much your post means to me!!! sadly i'm crying as i write this. When i was first diagnosed i was so glad i didn't have lupus i thought this would be a walk in the park, id be better then ever in a year i said. But now i'm learning the hard way literally that this disease is horrible and there's nothing it doesn't affect, from my joints to my muscels to my eye sight and heart rythm. I am so sad your jobs in jeopardy, i really do hope you don't lose it, i know how hard it can be just finding a job with fibro, let alone the stress of losing one and trying to find another. Hearing your story is so comforting, just to know i'm not alone. This is a horrible disease and whilst i'm sure that in time, the emotional pain i,m feeling from and about it at the moment will fade and i will get to a point in my life where i will have this disease managed as best as is humanly possible, it doesn't stop this disease from being any less traumatic- which is ironic considering how many people believe it's a disease caused by trauma.

@ winternow, I had the same thing, i changed religions and lost my family and all my friends, I was dissowned for 2 years before my family would speak to me again. But they still tell me i'm cursed by god and this is his punishment. Ironically I've now left the second church i joined but that was for theological and religious reasons, well that and their elders kept tellimg me god had told them i was emotionally broken and i needed emotional therapy to fix this disease. i'm to scared to give religion a try now, i'm thinking of looking into buddhism but for religious group that doesn't believe in god, they deify thier buddahs which i find ridiculous. And like you i'm very direct and more so now i have fibro infact these days i border on the deliberating provocative, just because i now find people over reacting to what i consider small stuff funny. I'm trying to stop that attitude mind you, i find myself rude when act like that.

Thank you again so much, I never thought i find anyone who understands. I was soo scared i was going crazy and now i know i'm not.

Bec I am so sorry you have to struggle with friendshipa. I do not have any of minds now they all dropped me I have all new friends and most of the are MDJ friends.I am here for if you need a shoulder please feel my armas around you. Much Love River

Thank you River, knowing i am not alone means so much. After many hurtful comments from my lifelong best friend, i finally sent her a email gently explaining what fibromyalgia is and how her comments her, 20 minutes ago i recieved her reply and i was told i'm a a attention seeking exagerator, she is sick of my links and posts on facebook about fibromyagia and medical research and that if i think she's not listening to me properly then obviously she's not good enough to be my friend. Your post came at the right time when i needed comfort. THANK YOU!

Oh Bec she sounds so much I wanna my friends who also use to tell me there was absolutly nothing wrong with me. She been a wonderful friend till I got sick then she was always putting now and my hubby for puttin up with it I sent her articles on fibro she refused to belive I had it. I am so happy If was able to help you. You will make lots of wonderful friends here . I am here for you Just give PM anytime Much love River

Bec, your story is a common thread among us Fibro warriors. But while we used to be Fibro sufferers, we are now Fibro Survivors as we lift each other up and are here always, when one of our fellow group (fms family) members needs a ready ear or a soft shoulder.

It is so heartbreaking when our old and 'good' friends fall by the waysid, of their own choice. If we drop them it is only because we finally Must begin to think of our own emotiona welfare. I have tried the printout route to try and help them understand what Fibro is like and how devestating it can be, to no avail. The sad truth about my own experience is, that most of my friends do understand, but is some of my family members that don't and don't even want to. They don't ask and I don't tell any more.

I know it's a miserable ordeal but just want you to know it does get better. Once we finally Accept, Grieve for our 'before fms' life, and then begin to adjust to our new challenges and way of doing things. Life may still be painful or limited, but, "We Get by With a Little Help From our Friends". <3

love and hugs, Karen