Post # 1
Hi bees, I was just wondering if any of your have fibromyalgia (or have a close relative who does). I wanted to know how you deal with it and live your day to day life. Do you work?
I’m asking this because my sister has fibro and it’s been really tough on her the past few years. She doesn’t qualify for disability and she hasn’t finished college so her job options have been so limited she hasn’t really worked. I’m concerned for her because she just turned 30 this year and doesn’t really have any prospects for bettering her life right now.
We’ve grown apart the last few years because of frustration on both of our ends. She’s tired of me asking what she’s going to do with her life. I’m tired of her “I don’t know” answers.
She lives a pretty isolated life right now. Not many friends and since she doesn’t work or go to school is home pretty much all day every day. She lives with our mom, but they fight like nothing else. So I’m hoping several bees can share their story so that I can share it with her.
Post # 3
I don’t, but at my last position our office administrator had fibromyalgia. Some days she worked from home and sometimes she needed a cane. She was going to school for IT last I heard.
Has your sister considered desk related jobs that she can do from home? I can work from home, also–I’m an engineer. Many companies provide these options and would be understanding of her situation.
Post # 4
@ejs4y8: The problem is most of the jobs I’ve seen that offer telecommuting are ones that you either need experience or education for. She has an AA in addiction studies, a Certified Nursing Assistant license (that’s a very physical job!) and an incredibly spotty work record. (She works from Jan to April as a receptionist each year for the last 2 years I believe. Before that she didn’t work for 3 years. And every job before that she hasn’t held for more than 6 months at a time.)
I’ve been trying to interest her in medical billing but she said it wasn’t for her…
Post # 5
My mom just found out that she has it. It has been very hard for her, but if you have fibro you cant let it get the best of you. Tell your sister to control it, not let it control her! Its prolly hard to do, but if she sets her mind to it she can get back to her normal sefl!…Hope i helped a little!
Post # 6
I’m not sure what the technical name is for is, but my cousin has SEVERE bone and joint issues. We’re talking fracturing her vertebrae from walking kind of severe. Meanwhile, she’s been dealing with it since puberty basically and is a HS senior this year. Last summer she underwent drastic treatment that basically rendered her infertile… but yet she still dances (ballet/jazz) and goes to the summer camp she’s attended her whole life. She’s ski’s and doesn’t let it get her down. She’s pretty much my hero, because if she can be so happy, be president of her NHS, and still be active with everything going on with her body, I really have no excuse.
I guess any illness is what you make of it. I’m not sure what level she is at, but my time in medicine taught me that more so than an actual diagnosis or disease… it’s what the patient makes of it. She can dwell on her fibro and let it hold her back… or she can fight. Basically, love and support her… but push her to move past it. There’s no reason for her to be so isolated. Do you think there’s depression or something else at play?
Post # 7
I have chronic pain. I think fibro is an unfortunate term that doctors like to throw around a lot. Once you get labeled as having “fibro” then other doctors don’t pay attention to your problems as much because they are probably just due to fibro which has no known cure or cause. Anyways, I went to a three week pain rehab program and my life has been better since. I met all sorts of people in the program, including many fibro patients. The program seemed to work for many. The pain isn’t gone, but you learn how to live a normal life with it. PM me if you want the name of the program. Your sister honestly sounds like she’d be the perfect candidate for the program, and the best part about it is they have family days where you could attend to learn what to do to help her and learn what you have been doing that may have been hurting her.
Post # 8
@Miss.Lace: I’m very sorry for your mother. 🙁 Yes, I tell my sister to stop focusing on what she can’t do and focus on what she can. However she’s always been easily discouraged, so I don’t know how she’s going to take the mental leap necessary to get on with her life.
@KLP2010: Wow, your cousin sounds amazing. I’m sorry she has to go through such troubles at such a young age, but I’m glad she’s able to still live her life to the fullest.
I agree that any illness is what you make of it. I try to push her toward thinking about her future, but every time I bring it up she starts crying and says she doesn’t know what she is going to do with her life. 🙁 The conversation goes downhill after that. I’ve been telling her that very few people in the world figure out what they want to do and spend their life doing it. At this point she should just do anything, if only for the sake of getting out of the house.
I do think depression is a part of it. I would be depressed if I was no better off at 30 than I was at 18. She used to go to counseling for it but she said Veteran’s Affairs only pays for a certain number of counseling sessions so she hasn’t been recently (and she said it wasn’t helping anyway). She doesn’t work so she doesn’t have any insurance.
@amariem25: I sent you a PM. I’d love to know how I can help her more. At this point though I think we’re both just confused and frustrated. Nothing seems to be helping at this point. She gets lots of pills for the pain, but she says they don’t really work.
Post # 9
I have an aunt who has it (and know an acquaintance who also has it). It is very debilitating and like another poster said, some Doctors often stop listening to patients who have it. It’s so bad that my aunt can’t get out of bed some days and you just look at her, she looks quite ill. She aches all over. She said she didn’t start feeling it until after getting very sick from something else and her body just continued to deteriorate. A lot of people misunderstand the condition and so there’s frustration on both ends. To me, it’s one of the worst diseases to live with, I hope to never deal with anything of that magnitude. My aunt hasn’t found a medicine regiment that has decreased the pain, BUT she has said living a stress-free life AND letting your body rest when it needs it has helped tremendously. It’s been difficult for my aunt as far as employment, luckily her husband is employed but she definitely had to force herself somedays and take disability on a few occasions. Good luck, I hope your sister finds some treatment to ease some of the pain or finds a way to cope!
EDIT: I know some people may hate this suggestion but counseling could help her. Maybe not with the pain, but possibly with acceptance and dealing with all the frustration. There is a supposed link between depression and chronic pain/diseases; not sure if I agree with that but I think it would be great for her to vent and explain the frustrations in a manner that would be beneficial.
Post # 10
I have it and know how she feels. I was misdiagnosed /over-diagnosed with several other things and saw several specialists, and no one put everything together to help me. Each specialist seemed to be only concerned with their specific area of expertise, and somehow managed to forget that there was a whole body involved as well as a whole person needing answers. Over the past five years I was sent from Dr. to Dr., and finally to a rheumatologist, where I finally feel is where I belong. I am on several medications that we play around with, and so far the combination is helping…but I have good and bad days, and never know what I’ll face when I get up. I also can’t sleep, so am dealing with that as well. I had to stop working in ’05.
Yes….I am depressed, and get asked the same questions about what am I going to do for the rest of my life. I’m too young to be home all the time too, but if I was diagnosed at age 30, I’d really have been miserable. I don’t think anyone can really imagine what it’s like unless they’ve gone through it and live with it. Counciling can help, but it’s pretty expensive, even with insurance. Mine won’t cover Psychiatry except for an initial visit, and sessions are held with a social worker after that.
I think it’s wonderful that you want to encourage her and not condemn her, but I think she has to find her own way. Most people don’t understand it, and after awhile, you start to question your own sanity when experiencing the doubtful looks and questions from people who either can’t or won’t accept it. It’s pretty frustrating, that’s for sure. I remember meeting someone who told me she had it when she was in her early 30’s….I thought she was just being lazy. It’s one of those obscure things you hear about but never know someone personally who has it, so it can be a hard concept to grasp.
Just be there for her and offer your help when you can. There are many online support groups she may find helpful, so maybe do some research and send her some links. Best of luck. You sound like a great sister to be so concerned.
Post # 11
I was diagnosed in March of 2008, but I had suspected that I had it for a long time. I was 20 years old when I was diagnosed, but I’ve lived with it since I was an early teenager. It’s so difficult to know that I’ll probably never live a day in my life without pain of some kind and that no one I know can totally understand.
But, if I let my pain hold me back from anything I ever wanted to do, I would be in pain and miss out on so much. If I go full force and push through, even if all I want to do is lay on the couch, I am still in pain, but I can still have fun and make good memories.
I know FI and my family totally support me, but honestly, there’s only so much anyone can do. I have to be the one to make my own choices and deal with things on my own in order to accept their support.
For helping your sister, ask her often how she’s feeling. Tell her you believe that she really is hurting the way she says she is. Often, people with fibro don’t feel like anyone really believes them. Get her a gift certificate to a massage place that have therapists trained in how to help people with fibro. Stay in with her, watch a movie, have a spa day, and try to focus on the positives. Often, fibro is a lonely journey. I don’t know anyone else who has it, and no one else really understands what I feel. But, what makes a big, big difference is when FI asks how my fibro has been and how he can help.
I hope that helps! Don’t give up on your sister…. she needs you!
Post # 12
I also have fibromyalgia, and was diagnosed when I was 21 years old. I agree with everything that piglet said. It is so important to me to push through when I can, but to know when I can’t. I find there is power in knowing what I can do about my fibro. There are things I can control, like diet and stretching. But there are things I can’t control, like needing at least 9 hours of sleep and being in pain every day (BTW, if I have a bad fibro day on my wedding day, I am going to flip my ****)! I have learned to listen to myself, to know that doctors are not always right, and to trust the doctors that listen. I have also learned to say “no” to others when my body is telling me to rest. I am definitely not a go-getter anymore, but I have been able to get a masters degree, and work full time. I am so thankful for those two things, as a lot of people with fibro are in worse shape than I.
One thing that is difficult about fibromyalgia is that it is an invisible disease. You haven’t lost your hair like from chemo, you aren’t in a wheelchair, but it is a very real disease. I recently went on a trip with my sister, and had to frequently remind her I needed to take a cab when normally we would have just walked. I’m not lazy, I just can’t do it. She didn’t care either way, but needed me to tell her how I felt, so that we could both enjoy the trip.
It is scary to think about your future with fibro.. how will I be a mom with chronic pain? What am i going to be able to do with my life? As i said earlier, am I going to be in pain when i am standing at the altar? So I don’t totally blame your sister for her answer. But people get sick, and they still live full lives. Hopefully your sister can learn what works for her and live her life as full as possible.
Post # 13
I have fibro, i found out about 2 years ago and i really try to live my life just like anyone else. It can be really hard, especially how exhausted i feel but i dont let it control my life. I was on a medication called Savella for a while and it helped so much, i stopped taking it because i didnt have health insurance and have not been on any medication for almost a year. I did work a 9-5 and take classes, but after the wedding i got to quit my job and now im just in school. I dont really like telling people that i have fibro because they just look at me like im whining or making excuses, the way firbo is looked at by people both medical professionals and non can be really frustrating. Basically i try to ignore and as someone else said “push through” as much pain as i can.
Post # 14
@sjones724: It sounds like you are like me… I live with my disease, I try not to suffer from it. The problem is that with many online support groups I have found, is I end up feeling worse about it than when I went on there in the first place. (make sense) because people’s lives revolve around their fibro, and their fibro does not revolve around their life.
I was diagnosed about 12-13 years ago, (my son was like 2 or 3 thats how I guage the time, he is 15 now) I too haven’t been able to keep a job (aside from 1 or 2) for over 6-9 months, eventually its like my body just gives out.
I finally think that all this time later, I have come to realize, I will probably never be able to work Full Time for any length of time and am now looking for permanent part time work.
I also just had surgery for meniere’s disease and got my hearing aide and so now i am employable again. 🙂 yay!!!!!
My husband (we have been married 18 years and are planning our vow renewal for our 20th anniversary) tries to be as understanding as he can be. I do understand the fatigue, and no one believing this thing… its so frustrating, I keep it to myself. This past year has been rough, with my menieres, 2 major surgeries, etc… But I just keep on keepin on.
good luck to all of you/us/them… 🙂
I guess I wasn’t much help, but its nice to know we aren’t alone! 🙂 yay!
Post # 15
I was diagnosed 11 years ago and was fortunate to have a long period with very mild symptoms. This last October I slipped a disk in my back and that injury brought my fibro symptoms back with a vengence. I was out of work on medical leave for 4 months and then went back. I work 12 hour days, 5 every 2 weeks. It’s hard because I’m on my feet for my whole shift, it’s a long painful day. I was in school and I’m still on a medical leave from school until next year.
I take narcotics daily for pain and just try very hard to take care of myself. Sleep is the MOST important thing to me. People laugh at me but on nights before I have to go to work I go to bed at 8pm. I cannot function without good sleep, it makes me better able to deal with pain.
The hardest part for me is having an invisible illness. People don’t understand why you have no energy after sleeping 12 hours. People don’t understand why I limp but I don’t have a leg or foot injury. When you forget words while speaking people just think you are an idiot, not someone with an illness. Thank GOD for my Dr. She understands and is very supportive and I’m so lucky to have her.