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Response to Your Diagnosis
I was just wondering how your friends, co-workers and family members respond to your diagnosis of "fibromyalgia" or "Chronic Fatigue Syndrome". I often feel like I have little support from people... excluding my best friend, who had cancer when she was very young.
It is hard for me to read these posts. I just joined the forum--17 years after being diagnosed with CFS. I was even in a U of M research program back when it was still considered an infectious disease. My oldest child was 13, followed by 3 more children, when I first got sick. I couldn't expect them to understand and, in fact, they have some baggage from not having a mother over the years. I believe that they see me as weak and I wish they could have known me before I got sick. My husband has never been supportive. Because I was never validated by him I suspect that that is part of the reason why my kids don't even want to hear about how I feel. I remember once when I was too sick to get out of bed and he stood over me screaming, "What are we going to do for supper"! I grieve for who I used to be, even yet, but only because I wish they knew that it is the disease that has robbed me of my vitality, intellectual abilities and energy. They think I am just lazy. But it's not all bad. I just found a doctor who has fibromyalgia and follows the Teitlebaum protocol. He has given me hope, has validated the illness to my husband to a small degree, but most of all....I have realized over the years that although I wish I had the kind support of my family, I don't, and to continue needing it is emotionally destructive. There are a couple friends I have found over the years who are kind and understanding. The rest of the world...well, it's none of their business.
No, I can honestly say the PCPs' that I have seen are not knowledgeable in it, I don't even bother to tell them about it. They have my medical records. One doctor was a pain doctor, he is the one who told me about "when they can't figure you out that is what you get diagnosed as".
The only pain I get are the thigh muscles have a very deep ache that hurt as if you had a toothache. I can move, does not hurt to be touched, can't say I get fatigued, but I do suffer from insomnia anyway.
Those are basically my only pains.
The only pain I get are the thigh muscles have a very deep ache that hurt as if you had a toothache. I can move, does not hurt to be touched, can't say I get fatigued, but I do suffer from insomnia anyway.
Those are basically my only pains.
It's a huge comfort to here most people are being given the support from family ,friends and even there rhumy!!!! i found when i was diagnosed with fibro and c.f.s that i was given less support from my family and friends and i found that it did discriminate.. my body and posture have changed over the past two years and also my looks are not what they use to be..this doesnt bother me as much as having the illness but i have been asked by family members who just dont understand my illness but yet they see me when am ill and have accused me of being on drugs. this came as the last blow for me and though am not on drugs or never have been i cant put any weight on and remain very thin since bad flare up...my doctors have not been supportive and give me anti-depressants and shue me out the door..i dont have any support from anyone now and i look after myself and my 13 year old son..the only support i recieve is by phone ,my sister who lives the other side of the country and this forum. i dont tell people whats wrong with me anymore i just pretend am well.. it seems the best way unfortunatly..hope your all doing ok best wishes to you all. zz
"I mention that I have CFS, I am told "well, I am tired all the time too!". I HATE that statement."
I do as well and I blame the CDC for this. Our illness has a long history and why most people in America who have CFS don't know this.... I'm not sure (?). To read about the history of CFS (AKA: Myalgic Encephalomyelitis), check out my journal entry below.
Also,tThere is also a petition link that I posted to fight in my journal to speak out against the latest abuses that Dr. Reeves at the CDC is trying to get away with. We can decide whether or not to let this man get away with it, or we can speak out. I choose to speak ! You can also sign the petition and have your name listed as "anonymous".
http://www.medhelp.org/user_journals/show/91344?personal_page_id=495962
I do as well and I blame the CDC for this. Our illness has a long history and why most people in America who have CFS don't know this.... I'm not sure (?). To read about the history of CFS (AKA: Myalgic Encephalomyelitis), check out my journal entry below.
Also,tThere is also a petition link that I posted to fight in my journal to speak out against the latest abuses that Dr. Reeves at the CDC is trying to get away with. We can decide whether or not to let this man get away with it, or we can speak out. I choose to speak ! You can also sign the petition and have your name listed as "anonymous".
http://www.medhelp.org/user_journals/show/91344?personal_page_id=495962
PETITION LINK:
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/signatures-21.html
Reading all of these posts, it is so sad that there is such a misunderstanding, isn't it? I have CFS and have found that there is very little support for that diagnosis. My husband tries very hard, my kids do too, but mostly if I mention that I have CFS, I am told "well, I am tired all the time too!". I HATE that statement. It is not the same as the extreme exhaustion of CFS. When I tell people that I get up in the morning and want to just crawl right back into bed, that I feel like I have been hit with a truck, it isn't the same as being tired at the end of a long work day. Also, people will tell me, "well, you look good" and I say, yes "make up and a good hair day will do that". I don't LOOK sick all of the time. I have had way more support with my heart issues than with the CFS. I think it is sad. and to the woman who thinks she doesn't have fibro, I hope you don't. My sister has fibro, it is REAL and it is disabling. I wouldn't wish it on anyone.
I was dx'd with fibro on may 14,2004. the Fibro came with ptsd 9 years ago on the 20th.I have 8 other conditions and a new one emerging.
When I told my dad told me Fibro is just a label you are given when they can not diagnose you.
my mom tries to be supportive, but doesn't understand it. my brother still thinks I'm being lazy, and we haven't talked once in 3 years now. my sister helps me out when she's in town by taking my kids for a few hours to a week once a year. she still can't figure out how I keep up with 2 pre-teens. they wipe her out in 3 hours.
I got most of my support from my rheumatologist. he has fibro, he can/has finish my sentences. he explained what it is and what I can do. he told there are 4 ways to treat fibro: 1) prescibe medications for immediate relief. in my case xanax 2)recommend treatment that makes the body feel better. as we all know fibro amplies every underlying problem, so if we can get it fixed do it. he would just rather try to fix the low levels of dopamine in the brain first, and then see what we're left with. 3) work on the causes in order to restore dopamine levels. 4) prescribe medications to restore dopamine levels;mirapix or requip. both of these are off-label protocol for dopamine agonists and they aren't easy to tolerate. my IBS stopped me from using either of them, but I did feel a little better. the fibro fog was for the most part gone, pain level was lower provided I didn't over do it.
I would never met my rheumatologist if my PC gave on me. my PC kept plugging away when a test came back neg or normal. I have a good working relationship with all my doctors.
I lost people who I thought were friends, but that's fine with me. w/o them I have more time with my true friends and can make new ones.
When I told my dad told me Fibro is just a label you are given when they can not diagnose you.
my mom tries to be supportive, but doesn't understand it. my brother still thinks I'm being lazy, and we haven't talked once in 3 years now. my sister helps me out when she's in town by taking my kids for a few hours to a week once a year. she still can't figure out how I keep up with 2 pre-teens. they wipe her out in 3 hours.
I got most of my support from my rheumatologist. he has fibro, he can/has finish my sentences. he explained what it is and what I can do. he told there are 4 ways to treat fibro: 1) prescibe medications for immediate relief. in my case xanax 2)recommend treatment that makes the body feel better. as we all know fibro amplies every underlying problem, so if we can get it fixed do it. he would just rather try to fix the low levels of dopamine in the brain first, and then see what we're left with. 3) work on the causes in order to restore dopamine levels. 4) prescribe medications to restore dopamine levels;mirapix or requip. both of these are off-label protocol for dopamine agonists and they aren't easy to tolerate. my IBS stopped me from using either of them, but I did feel a little better. the fibro fog was for the most part gone, pain level was lower provided I didn't over do it.
I would never met my rheumatologist if my PC gave on me. my PC kept plugging away when a test came back neg or normal. I have a good working relationship with all my doctors.
I lost people who I thought were friends, but that's fine with me. w/o them I have more time with my true friends and can make new ones.
I fortunately have a lot of support from my family and friends..it's taking a bit longer for my husband to come around but I know he will.
I got really sick a few years back and no one took me seriously. After my appendix ruptured and I almost died my family has been extremely supportive. It's too bad that it took something like that to turn them around but at least they're here for me now and that's all that counts.
P.S.
I'm also glad that we have each other here in this forum, you guys ROCK!
I got really sick a few years back and no one took me seriously. After my appendix ruptured and I almost died my family has been extremely supportive. It's too bad that it took something like that to turn them around but at least they're here for me now and that's all that counts.
P.S.
I'm also glad that we have each other here in this forum, you guys ROCK!
To those who have a true 'better half' and friends who support and believe in our illness is a realy blessing. I know so many people who have to fight their conditions alone.
Whether you have FMS, or ME/CFS, or both.....symptoms are mostly unseen, hence no one truly believe that you 're seriously ill.
I believe there're many doctors out there would rather believe FMS, ME/CFS are just a syndrome where they don't know what catagory to put you into. What ignorance and arrogance those doctors are. I've met one infectious specialist who claimed that he could 'cure' me in 3 months. When I was didn't not respond to his treatment, he dismissed me as a patient. Lucky for me. Otherwise, I iwll never find the doc I have right now.
My husband was a pilar of rock......we research every book in the library to finally figured out that I 'might' have ME/CFS. ...and he's been supportive every day for 15 yrs. I'm extremely blessed.
My family? is a different story. Until my older sister had stage 4 cancer, no one realized that it actually took enormous courage on my part to live with ME/CFS, Addison Disease, and Cardiomyalpathy, now add hypothyroidism. Well, better late than never, true?
To those who until this day have found no support, my heart goes out to you all. Please know that you're not actually alone, we are all here for each other and you're more than welcomed to come and vent.
In loving friendship,
Kit
Whether you have FMS, or ME/CFS, or both.....symptoms are mostly unseen, hence no one truly believe that you 're seriously ill.
I believe there're many doctors out there would rather believe FMS, ME/CFS are just a syndrome where they don't know what catagory to put you into. What ignorance and arrogance those doctors are. I've met one infectious specialist who claimed that he could 'cure' me in 3 months. When I was didn't not respond to his treatment, he dismissed me as a patient. Lucky for me. Otherwise, I iwll never find the doc I have right now.
My husband was a pilar of rock......we research every book in the library to finally figured out that I 'might' have ME/CFS. ...and he's been supportive every day for 15 yrs. I'm extremely blessed.
My family? is a different story. Until my older sister had stage 4 cancer, no one realized that it actually took enormous courage on my part to live with ME/CFS, Addison Disease, and Cardiomyalpathy, now add hypothyroidism. Well, better late than never, true?
To those who until this day have found no support, my heart goes out to you all. Please know that you're not actually alone, we are all here for each other and you're more than welcomed to come and vent.
In loving friendship,
Kit
Hello All,
I have the support and help of my live in companion and I also have an 11yr old who tries to understand. I have no support from my Father and Step Father or my Sister and Brother my one Sister and I speak on the phone and she tries but I don't like to complain to her to much. I don't have any visitors ever!! That really upsets me because I'm alone all day and at night it's just me and my daughter. I don't drive so I can't get to them. I've been sick for almost seven years and I can count on one hand how many times anyone has come to see me. I usually see my Family on holidays and special occasions if I can get to them. They get very angry at me for not attending all the gatherings and for not calling often enough. I can hardly lift my head off the pillow and they're angry at me...what a joke!!
I could go on and on about this but my hands hurt to much so I'm going to have to stop typing. :)
xxxooo
I have the support and help of my live in companion and I also have an 11yr old who tries to understand. I have no support from my Father and Step Father or my Sister and Brother my one Sister and I speak on the phone and she tries but I don't like to complain to her to much. I don't have any visitors ever!! That really upsets me because I'm alone all day and at night it's just me and my daughter. I don't drive so I can't get to them. I've been sick for almost seven years and I can count on one hand how many times anyone has come to see me. I usually see my Family on holidays and special occasions if I can get to them. They get very angry at me for not attending all the gatherings and for not calling often enough. I can hardly lift my head off the pillow and they're angry at me...what a joke!!
I could go on and on about this but my hands hurt to much so I'm going to have to stop typing. :)
xxxooo
Since being diagnosed with FMS, two-two/half years ago, my whole family has been supportive. It now seems that my husband has forgotten all of the days that I laid in bed too tired to get up and too sore when I did. He is constantly on me to get up,move around, what's for dinner, now I'm ironing his shirts, and biggest grip out of me is his constant yammering about when I'm going to file for disability. Maybe I need to bring out that old letter that the lady wrote to here entire family explaining what she had and how they acted. I am sick and I can't do what I used to do. Planting a flower in the yard put me down for the rest of the day. Where to go from here???
Not a lot of people know I have FMS. My friends are more supportive than family and that hurts to say it. DH is trying to be supportive but sometimes he isn't and of course that hurts.
I'm pretty certain my family isn't as supportive is because they don't really understand fibromyalgia. I try to educate them but get tired of sounding like a broken record.
I'm pretty certain my family isn't as supportive is because they don't really understand fibromyalgia. I try to educate them but get tired of sounding like a broken record.
A married couple who are very close friends of mine are the ones who offer unconditional support (he has RA, her mother had FMS, so they are very sympathetic), but most people's reactions are, "You don't look sick." I've been involved in music and musical theater in my area since 1980, and some of my older colleagues are supportive (the ones who know, anyway). One director whom I told of my condition just looked at me for a few seconds and walked away and I haven't heard a thing from him since. Another went into a fit of histrionics about where she was going to find another tenorI guess what I'm trying to say is you really find out who your friends are when you are diagnosed with a chronic condition, and those are the ones you learn to keep close.
I was very suprised to see that the majority of the members who voted "Response to Your Diagnosis" was good, or little support, its better than none.
I read the support some of you have from your doctors in diagnosing whats going on.
I have a support network they are my mum and eldest daughter, but they live 30 miles away and my mum doesnt drive and my eldest daughter has a family with three children who require a lot of her attention. I find it hard to get myself motivated to drive up there to see them, and the pain stops me from driving up there. I have a husband and two children (aged 22 and 23) who live with me but they dont recognise that im ill. It was different when i had a operation on my knee, my family who live with me were a great help when it came to even making a cup of coffee, they would say no mum you sit down and i will make it, but with my Fibo symtoms they dont seem to recognise it! Ive got to have a hystrorectomy soon, i will have to put a bandage around my stomach so they help lol.
by ladygeegee
Perhaps you don't have fibro. All I know it got progessively worse. I had all the syms come on me at once. When I was working I was out when the weather was bad. I was out because of migraines and on and on. I think like this one Dr wrote.... the different stages of fibro. At first a sym here and there. Then finally it hits you like a ton of bricks. Flare up after flare up.!!! I disagree with " it's a diagnose that Dr give when they can't find out what's wrong with you" The dr's who know about fibro are not quick to "label" everyone with an unknown disorder with fibro. It's the lazy ones who don't believe it's real that throw everyone all together. I have read so many threads, articles and Journals on fibro. We all share common syms, pains, aches etc.....
What ladygeegee says above I dont share the same opinion as my doctor doesnt recognise it. I do agree with "At first a sym here and there. Then finally it hits you like a ton of bricks. Flare up after flare up" This is whats happened to me. Its helpfull in my case for the doctor to ladel me so i can claim benefits, which im not happy about as i love my job and would like to go back to work asap, but the way i feel i cant do this as yet. :-((
I read the support some of you have from your doctors in diagnosing whats going on.
I have a support network they are my mum and eldest daughter, but they live 30 miles away and my mum doesnt drive and my eldest daughter has a family with three children who require a lot of her attention. I find it hard to get myself motivated to drive up there to see them, and the pain stops me from driving up there. I have a husband and two children (aged 22 and 23) who live with me but they dont recognise that im ill. It was different when i had a operation on my knee, my family who live with me were a great help when it came to even making a cup of coffee, they would say no mum you sit down and i will make it, but with my Fibo symtoms they dont seem to recognise it! Ive got to have a hystrorectomy soon, i will have to put a bandage around my stomach so they help lol.
by ladygeegee
Perhaps you don't have fibro. All I know it got progessively worse. I had all the syms come on me at once. When I was working I was out when the weather was bad. I was out because of migraines and on and on. I think like this one Dr wrote.... the different stages of fibro. At first a sym here and there. Then finally it hits you like a ton of bricks. Flare up after flare up.!!! I disagree with " it's a diagnose that Dr give when they can't find out what's wrong with you" The dr's who know about fibro are not quick to "label" everyone with an unknown disorder with fibro. It's the lazy ones who don't believe it's real that throw everyone all together. I have read so many threads, articles and Journals on fibro. We all share common syms, pains, aches etc.....
What ladygeegee says above I dont share the same opinion as my doctor doesnt recognise it. I do agree with "At first a sym here and there. Then finally it hits you like a ton of bricks. Flare up after flare up" This is whats happened to me. Its helpfull in my case for the doctor to ladel me so i can claim benefits, which im not happy about as i love my job and would like to go back to work asap, but the way i feel i cant do this as yet. :-((
:) good grief! One would think that I was sneakin a sip of Gramp's home brew the way I was spelling. It's a good thing that we all understand Typonese. :) :)
I am certainly happy that I didn't land in that doctor's office.In the almost 2 years since my diagnosesI have grown progressively worse. Everytime I have a flare, it takes me longer and longer to get over the worst of it. Like Gee, it hit me all at once. One day I was walking the flea market, and the next I was flat on my back.
I thank God everyday that I have 2 wonderful, well educated doctors who keep up to date with diseases such as fibo and chronic fatigue. It makes me angry when doctors place a "label" on me, when he walks a mile, or should I sat "shuffle" a mile in my shoes, then he might not be so earnest in labeling. I am so happy to have found medhel and this forum. I was scared to death after my diagnoses and needed someone to talk to that knew what I was going through.
This disease has taken away so much from me and all of the other sufferers of fibro/cfs, but it damn well can't take away our hope.
gentle hugs
Angel
I thank God everyday that I have 2 wonderful, well educated doctors who keep up to date with diseases such as fibo and chronic fatigue. It makes me angry when doctors place a "label" on me, when he walks a mile, or should I sat "shuffle" a mile in my shoes, then he might not be so earnest in labeling. I am so happy to have found medhel and this forum. I was scared to death after my diagnoses and needed someone to talk to that knew what I was going through.
This disease has taken away so much from me and all of the other sufferers of fibro/cfs, but it damn well can't take away our hope.
gentle hugs
Angel
Perhaps you don't have fibro. All I know it got progessively worse. I had all the syms come on me at once. When I was working I was out when the weather was bad. I was out because of migraines and on and on. I think like this one Dr wrote.... the different stages of fibro. At first a sym here and there. Then finally it hits you like a ton of bricks. Flare up after flare up.!!! I disagree with " it's a diagnose that Dr give when they can't find out what's wrong with you" The dr's who know about fibro are not quick to "label" everyone with an unknown disorder with fibro. It's the lazy ones who don't believe it's real that throw everyone all together. I have read so many threads, articles and Journals on fibro. We all share common syms, pains, aches etc.....As my grandma you to say " Fifty french men can't be wrong. I'm glad you don't suffer with all the syms most of us live with everyday. Perhaps your one of the lucky ones. I think sharing with people who understand our pain is good and a healthy thing. Take care and feel good.
Gee
Gee
"Fibro is just a label you are given when they can not diagnose you."
That is so sad ! IMO.. that is basically a confession of failure from physicians who say this.
That is so sad ! IMO.. that is basically a confession of failure from physicians who say this.
I have never told anyone about being told I have fibro. I have never missed work due to it. I don't think I have it anyway.
I have had other medical issues, but I am the type that hates to talk about medical issues with anyone.
I was told by one doctor that in all honesty, Fibro is just a label you are given when they can not diagnose you.
I have had other medical issues, but I am the type that hates to talk about medical issues with anyone.
I was told by one doctor that in all honesty, Fibro is just a label you are given when they can not diagnose you.
As far as my family I have a wonderful support system with all of them. It took my husband a short while to really understand. Bless his heart, he was so used to me digging out in my garden, racing across our land with my grand-babies and my dog babies all loaded up in my golf cart, working on my next quilt and then it was like over night, I was a different person. I have one close friend and she has been a trooper. We live in different states now, but talk at least 2 times a week and visit often with one another.
I stopped trying to explain to my neighbors, they look at me like I have 2 heads. My hubby's siblings have no idea how to act around me so I stopped going around them. They live out of town so that has been easy to do. My grand-babies range from 14 down to 3 years old(9 of the little stinkers) and I am so proud of them. Even at their young age they understand that Granny is sick and I won't get well. This disease is brutal in all aspects, it has no pity nor does this disease have compassion. I'm angry because it has taken so much away from me, just as it has every one else that has been afflicted with fibro/cfs. And then we have to fight every inch of the way to be recognized as having a crippling disease. But we will fight.
gentle hugs
Angel
I stopped trying to explain to my neighbors, they look at me like I have 2 heads. My hubby's siblings have no idea how to act around me so I stopped going around them. They live out of town so that has been easy to do. My grand-babies range from 14 down to 3 years old(9 of the little stinkers) and I am so proud of them. Even at their young age they understand that Granny is sick and I won't get well. This disease is brutal in all aspects, it has no pity nor does this disease have compassion. I'm angry because it has taken so much away from me, just as it has every one else that has been afflicted with fibro/cfs. And then we have to fight every inch of the way to be recognized as having a crippling disease. But we will fight.
gentle hugs
Angel
You are very lucky. Honestly... I am grateful for the support that I have from my best friend and husband. My husband doesn't see my illness and he treats me the same. But if I'm too sick to go somewhere, etc... he is always supportive of my decision and always puts my needs first. I am truly blessed in that sense.
When I was first diagnosed, I did have friends that were very uncomfortable when I told them my diagnosis. It is upsetting. I stay in touch with most of these friends (except the ones who ran away.. LOL!), but I can't discuss my illness with them and it is very difficult not to... especially when they ask me, "how was your day today ?" It's almost as if I need to lie to them. But yet when I ask them the same question... I'll get to hear about their troubles sometimes. ; ^) Anyhow, I am grateful for the little support that I do receive, but I believe that the medical field and the CDC needs to do a LOT more to get the word out on these illnesses. Not only are they real, but they can and often are disabling. The CDC has (privately) admitted that CFS/ME can be as disabling as MS, stage 3 AIDS, COPD and other terminal illnesses. Then why is there still so much doubt in the medical community ? That is hurting us. And also... Ryan Baldwin. He is the 16 year old teenager that was removed from his home by the state. Apparently, they don't believe that he is ill, despite his medical records and medical history and also being declared by SSI twice as being disabled. So we have more work to go... but I am hopeful.
I have found support from my best friend, my mother and my children. My husband wasn't so supportive at first. He was fit to be tied when I had to have treatments for anemia everyweek for 10weeks. He couldn't understand why I wasn't "back to normal".. The pain was hard for him to understand as well as my fatigue. I don't try to explain to neighbors and such. Only one neighbor I shared my story and she understood because her sister-in-law has fibro. The people I worked with were concerned at first because I was so sick at work. Thus I no longer have a job. It's been almost a year. A few ex co-workers do call and ask how I'm doing. I've stopped by the old job and the people say you look good........"Like stooping over a shopping cart is the new fashion statement !!!!".... Anyway I try to keep a postive mind.......lol
Gentle Hugs
Gee
Gentle Hugs
Gee
I also believe that I have been discriminated agianst (obivously.. with evidence) because of my illness. Yes, I have been treated differently. Trust me... I prayed for a lupus or MS diagnosis.. anything, but CFS. Isn't that horrible when we have to do things like that because we are afraid of being judged and/or treated differently ?
I thought this would be a good thread in light of CFS/ME and fibro awareness week. We need to speak out on how disabling these conditions really are and why we need more funding for research and more support from physicians and others.
My employer was unsympathetic (even though my head supervisor knew someone with FMS who was wheelchair bound). Hence, being fired while out on disability.
Honestly, were it not for my husband's compassion and love, I don't know where I would be right now. He nursed me through the surgeries (a hysterectomy and 3 for my leg) and without him I honestly believe I would be much worse. My best friend, who has crippling arthritis, gives me a lot of support. My son also understands that I am ill and that they do not know why. Otherwise, I don't look for comfort from others who are not best friends or family members. I am disabled from my injury, so I don't bother to mention the FMS/CFS unless I know the person well.
Honestly, were it not for my husband's compassion and love, I don't know where I would be right now. He nursed me through the surgeries (a hysterectomy and 3 for my leg) and without him I honestly believe I would be much worse. My best friend, who has crippling arthritis, gives me a lot of support. My son also understands that I am ill and that they do not know why. Otherwise, I don't look for comfort from others who are not best friends or family members. I am disabled from my injury, so I don't bother to mention the FMS/CFS unless I know the person well.
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