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Having fibro and having a life?
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Orchid_918 posted:
Hello there fellow FMers. Feeling a bit depressed and worried for the future tonight, hoping some of you may be able to share some wisdom or experiences to help me through it. I'm 27 and I have fibro. I was diagnosed almost 2 years ago, although I think its been affecting me since my teens, just getting rapidly worse in the last couple years. I'm currently trying to balance working and trying to finish my degree, and 2 weeks into the semester I'm having a major flare and can barely walk. I'm seriously questioning if I will be able to stay at my job, and basically just worrying about ever having a normal life. Fibro has stopped be from being able to work much over the last 2 years and I am afraid it will stop me from finishing school. I worry that even if I do finish, will I be able to hold a job then? My husband is very loving and supportive, but I worry that the stress of dealing with my condition will take its toll on our marriage. So tell me, how do you all cope with the responsibilities of daily life when fibro is wreaking havoc on you?
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beachlady719 responded:
Hi Orchid, I wish I was here to tell you that everything will be just rosie, but I would be lying. I am 47 years old have had fibromyalgia for 16 years now. I have 2 daughters ages 10 and 21. my oldest was only 5 when I got sick, but it had just started in my left arm. By the time I was pregnant with my 10 year old it was all over my entire body. I had 3 specialist while pregnant and everyone including doctors, family and friends tried to talk me into having an abortion. But my thinking was if I am this sick and being blessed with another baby it's for a reason. I had to go off all my meds, go through all kinds of test and had foot massages every day because my feet turned black because of the disease. But, I was right she was sent to me for a reason. She is very active in school, loves outdoor activities, and does all kinds of arts and crafts, just like myself. I was always active too. She IS the reason I am still walking now. It's a very difficult life because I am in the severe stage the doctor said. I was married for 22 years and the stress of my disease did not help our marriage. We have now been divorced for 8 years and he is my best friend. As time went by he began reading information on fibro and really understands now just what is going on with me and how much it has changed my life. At one time I did just about every water sport in South Florida where I lived, I went rollerblading, rollerskating, ice skating, had a beach cruiser bike that I rode for miles, painted my own house and even black topped my own driveway. I have given up much in my life, but I did have a poem published, wrote a childrens book and working on a book about my life.It's not all about the disease, but a big part of the book. I am hoping it will help other women with many issues. I did lose friends because of my disease. That's when you find out who really cares about you. I deal with the pain the best I can because it never goes away. The meds just take the edge off. I have to take meds to sleep, but I can't take antidepressants because I have severe reactions to them. Like right now my main concerns are fatigue and depression. The past 3 years it has just been awful. I get up and pack my daughters lunch, get her breakfast and see her off to school and by 8:30 I am ready to lay down. Every time I go to the doctor which is once a month he tells me the same thing,(Keep taking you vitamins) He now has me taking Centrum for women, Iron and extra vitamin D. I eat well and I do keep myself moving, but nothing is helping. Of course anyone with a chronic pain disease will have some level of depression, and right now mine is severe because I can't do what I want and I feel guilty alot because I can't always do what I want with my youngest daughter. I do go on her fieldtrips no matter how I feel and involved with everything at school. I do as much as I can at home and I do spend about 3 hours a week ironing her clothes. What I am trying to let you know is that everyone with this disease have different issues that bother them more or less than others. Meds work different for everyone. We all have to find what works best for us. Like my daughter I was always busy. I worked in the courthouse in Ft. Lauderdale and worked 60 hours a week. Now I am lucky if I can finish what I need to do in my house for the day. I gave up alot of things, but I have tried to find things I can do. It can be very depressing and there might be times you feel like giving up, but don't. Don't let this disease win. My doctor keeps trying to get me to let him order a scooter for me, but I won't do it, because it's like I am saying I give up and I will keep fighting this as long as I possibly can. Have your husband read up on the disease now, don't wait till it's to late ok? If you have any questions about doctors, treatments or meds please feel free to ask me, believe me I have been through it all. In one day a doctor put 12 injections across my shoulders. your not alone.
Laura
 
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rudyandirmouse responded:
Orchard. You sound just like me when I was 27 and newly DX'd with fibro. YES there is LIFE AFTER THE DX!!! I'm living proof.

I thought, back then, my life was over. I went and laid down on the living room couch and just waited to die. HELLO.. didn't! My DH, we didn't have children then, just let me wallow in my own sorrows.. my friends didn't. They showed up 6 months after the fibro DX, said ENOUGH. Got me signed back into classes. I was working on a teaching degree, Middle and Senior High, and drove me to campus, walked with me to class and even helped me study and catch up. ( I lost one semester due to depression. )

I got my 4 year degree, got 2 years more in Education and then we moved to TN where the brakes went because TN didn't want un prepared teachers/ in training from Los Angeles ruining their students. They told me teachers from California were un prepared to teach in TN. So fine, I stayed home, raised 3 daughters, 3 grand children and have had, all things considered, a BLESSED life!!

And looking back the only thing, the only thing that I am pissed off about is that I gave away, just lost it, 6 months of my life that I could have lived my way. But I let fibro take it from me and I swear 'it' will never get another moment of MY LIFE again.

Advice, get up, get moving, and live your life.. it is YOUR LIFE not fibro's. You may have slow days, you may have really painful days.. but there YOUR DAYS and you can pace and rest and pace until your head hits the pillow at night and you'll know you did the day as you wanted.. not as fibro would dictate.

So take your life back. It's not over, it's just differnt. This illness/ collection of illnesses don't own you. You are still you, you still make the calls, you still own your destiny.. So please make the adjustments as I did and have a good life.

Linda R.
 
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Anon_10089 replied to rudyandirmouse's response:
Hello-

I'm 29 and definitely have had FM for most of my life, although I was diagnosed a few years ago. I had pain and fatigue throughout my childhood and teen years, but I'd say the symptoms really started to interfere with my life in my very early 20's.

To be honest, the FM has forced me to make many choices I otherwise would not have. A few times during the last decade, I told myself that I would not give up on anything, just push through. And a few times in the last decade I have had complete physical and emotional meltdowns. In the last few years, I've really had to be honest and recognize and respect my limitations. It's taken me 2 years to recover from the last "I'll just push through it" stage.

I have worked part-time for years now and do okay with that. I cannot have highly stressful jobs. Although I am good with people, I have found that I do better with jobs where I do not deal with the public. I've been fortunate to find jobs that meet these specifications.

If I was in your position (this is just me and only my opinion!) I might look into fields where you could have flexible hours and possibly work from home--some kind of freelance work, perhaps.

I do believe that even with FM, it's possible to achieve a satisfying life. Part of that achievment is figuring out our limits, accepting them, and then living within those limits. Way easier said than done, I'll admit!

FM can be very hard on a marriage, especially when you're figuring everything out. I think it gets better once both spouses have accepted the changes that FM will bring. It also gets better when you settle into a good treatment routine. Then, at least it seems like something is getting done. I have a unique point of view in that while I have FM, my husband also copes with a mental illness. I have gone through some very difficult times because of his issues, but we've survived and have a strong relationship. I've never wanted out. In the course of any marriage, difficulties arise.

I know what's important to my husband and I try to not let the FM interfere with those things. And I think remembering to thank them for putting up with us goes a long way!

I hope you're able to find a balance that suits you and your husband!
 
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dawn025 replied to Anon_10089's response:
Hello fibro family,I am new to this site.My name is Dawn from Pasadena, Maryland.i have had fibro for 13 years now and need a doctor that takes insurance. i have been paying out of pocket for 6 years now and money is tight.i live in chronic pain everyday.i am always tired and worn-out. i am always cold. muscles are tight and achy.i have every symptom of fms and cfs along with ibs,kidney infections,I have had a hysterectomy, two carpal tunnel surgeries i would not wish fibro on anyone. it is a horrible syndrome to have, yet alone deal with everyday .. it will drive you nuts trying to figure it out.. cause there are new symptoms daily. i feel for my family because they see me in pain, see what i can and can not do. i also need a doctor willing to prescribe the current meds i an on.deep muscle massage works great for me, i also have three spinal cyst that like to flare-up upon any activity that causes me to hold my arms out.My neurosurgeon retired. Primary care moved out of state.Doctor currently seeing is over an hours drive and cost just over $200.00 a month. So anyone out there know a good doctor that knows fibro people, I would like their names. To find a meet new doctors scares me. I feel like I am starting all over again,coping my medical chart telling my story. Mentally exhausting.Some times I wish i had someone to take me by the hand and guide me. Like I have done for my father-in i cared for with lung cancer died in 05. My father I cared for with lung cancer died in 09. My husband who was crushed by a 51 thousand pd liquid nitrogen truck.smashing his pelvis and everything in that area. I am still caring for him, thank god he is alive.I have put my medical health on hold since 2005, but i am getting worse and need a doctor asap.that takes insurance. Looking for HELP!!!! Fibro and ME..I am scared and really don't know what or how to move forward.I am causing myself to spiral, STRESSED OUT!!!! Thank you, Dawn

 
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Margaret A Caudill-Slosberg, MD, PhD, MPH responded:
Orchid_918, you have asked an important question and I can see that once again the fibro community has given some great advice. Fibromyalgia is a waxing and waning condition that is not life threatening, it just feels like it is! The threat to a life is more from the loss of control and despair that can drag you down if you let it. The pain experience is about interpreting the pain sensation and managing the response to that sensation. Since we don't know how to turn off the abnormal volume of pain we have our most control over managing the suffering. How much or little you suffer has to do with a variety of factors- how much control you feel you have, social supports, prior life traumas, prior coping skills, locus of control, self efficacy, how you talk to yourself inside your head.

The locus of control has to do with how much control you think you have over what happens to you. If you feel that everything that happens around you is beyond your control your suffering will be greater. If you can define where you do have control in spite of this painful condition your suffering will be less. If you interpret the events that happen to you in catastrophic terms ("the worst thing that ever happened", "it's killing me!") you are more likely to have a difficult time controlling your suffering. Even if the skills you brought to the problem are not effective the good news is that you can learn new skills to manage the suffering. Finding where you do have control and nurturing yourself and your meaningful relationships will help to reduce the suffering and get a life, in spite of the pain. It may require doing things differently or even walking down a different path than you started but it will still be your path. Best, Dr. Margaret
 
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Caprice_WebMD_Staff replied to Margaret A Caudill-Slosberg, MD, PhD, MPH's response:
What a great response, Dr. Margaret!

It confirms so much of what I've learned and has been a great reminder to me.

I hope it helps you too, Orchid.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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An_239690 replied to Margaret A Caudill-Slosberg, MD, PhD, MPH's response:
Dr. Margaret,
How are we to control something we have NO control over? We can be happy and free and pretend we aren't in pain, but then the day comes like today for myself and Orchid where we can't hardly walk, talk, think, anything, and we are supposed to "buck up cowboy" in a sense? That's just not fair!
"NEW" coping skills doesn't help greatly. We shouldn't have to COPE with Fibro, we want to LIVE with it!
Sorry for being hasty if it was, but this the same answer every doc has told me for 14 years, and refused to treat me. I finally got one to actually listen to me and not give me this answer, and found out it was alot more than "just a headache" or "a low pain tolerance" or "lack of coping skills".
 
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frogmom25 responded:
Orchid,
I am a newly diagnosed, but have suffered for close to 20 years. I have the same fears as you. I've had to make heart breaking decisions over it.
I really do hope you find a balance in your life you want and having fibro. I have no coping methods for you as I haven't found any myself. I do wish you the best of luck.
 
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Booch007 replied to beachlady719's response:
Hi Orchid,

I am (old)..well, 57. I have been dealing with this dragon for about maybe it is 20 years...over 15 for sure. Started as hand issues, then weakness to the arms..then I got hurt lifting a patient in the ICU and the whole thing just spiralled after that.

I still work full time, I am blessed to have found somethng that fits me. I use different muscles during the day to alter the stress on me. I have changed everything just about in my life. This is my new life.

IT IS A FULL LIFE. As full as i can make it. I don't look at what I can't do, but what I just did do. Now I am known for crossing the line here. I push the envelope though in pain, I still do things. Almost like I refuse to admit I am giving this dragon one more inch of me.

In doing this I keep control. I have a flare and pull back and then up and out again. I have awful mornings, the pain is unbearable at times...but I sit at 5:20 in the a.m. with coffee in hand and take my meds and sit here on the computer and wait for them to help release me.

I take Soma, Tramadol and Savella(12.5). I take CoQ10, Mg and Vit b complex and Vit D 2000U. That is breakfast before breakfast. The I get on here and it adds distraction as a med and a joke on FB or Email as another med.

I wait about 2 hours and I rise and shower and stretch in the warm water and start the day. I make lists and create projects to keep moving. (the devil can't hold on to a moving target). I have about an 8-10 hour window of wellness I call it. NOW it has taken me......7 years of real trial and error to get this far, and I hone eachday. Nothing is not thought of in the future.......that for me is gone. Nothing spontaneous or lengthy....I know my limits for the most part.

DH just asked to go listen to our son tomorrow night at a club...YIKES, we are talking after 10pm...OUT in public, I am not sure I can do it. ""Plan"" I will pace tomorrow and nap in the day and medicate before we leave. BUT I have not agreed til the day is here....(could be a bad day)

I have had so many bad mornings and feeling that I was going to leave (exit...) It is past now, there is a light at the tunnels end. I am near that area now. The days are better. I have to say since being on the board and meeting so many people and made good friends years ago here...I AM BETTER.

You can get a sure footedness about you. Knowledge is power. Please look into the book I use so much. " FM and Chronic Myofascail Pain " a survival manual, by Dr Devin Starlanyl. I love this book.

It will teach you so much and give you hope and there is no way I will say we are ever without pain, but we can have a life.

I nurture my husband in many ways..........he knows when IT is bad the i am in the dragons mouth. He helps alot when he can. I am married 32 year now. My sons are 31 and 30y/o and I am now a Nana........this has changed my llife. So, there is more for you.

It sounds like a bad place to be in right now,and you have to work to get out of there. I do mind tricks, use music so much. ALWAYS on..I am humming away here...IT changes your brain chemistry too, not a pill, but it works and it is free. Not all the answers are in a medicine botttle.

I hug you from here in NY. I hug you from this chair at midnight (as I couldn't sleep yet...) I hope today is a better day. Life is perception........it really is, and we do have some control over that part of it. All my best, Nancy B
 
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Caprice_WebMD_Staff replied to An_239690's response:
Hi An_239690,

I think you may have misunderstood what Dr. Margaret was saying. She wasn't saying 'buck up cowboy'. (Thank goodness! )

I have FM too and have been diagnosed with it for two decades (and probably had it much longer). The only thing we CAN control is how we deal with it all. How we think about it and how it impacts our life, and how we can still pursue a full life despite it.

I'm glad you finally have a doctor who hears you. Unfortunately, my current doctor hears me but isn't particularly helpful. So I have to help myself.

I'm also glad you found us here and hope you'll keep talking.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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Anon_5741 responded:
I am 31 and I have the exact same fears as well. I just started school again for the 3rd time in hopes of eventually doing medical coding from home. But in the meantime I am in trouble with attendance at every job i've had for the past 7 years. I have usually been able to scrape by until I can get FMLA but this time I haven't been able to. I am so worried with this economy the way it is. I need this job but I need something much less stressful that does not deal with the public. I can't seem to find that. I don't know what to do. My family and friends think I should just "buck up" as well but i just can't anymore. I am tired of living like this, tired of working at my job in utter fear of having to use another sick day, tired of no answers. I just can't bear to go on like this, and I am very worried about my future. I have no idea what I should do next and I have very little support on this. My husband says I do not have the option of quitting.
 
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zareksmom replied to Margaret A Caudill-Slosberg, MD, PhD, MPH's response:
Dr Margaret,

Thankyou for your response here. I am 34 and diagnosed this year with fibro. I am raising my son who is just shy of 2. I think what I find hardest is managing the depression that hits when I feel like a bad mom because it hurts so much to keep up with my son's activity levels. I have been thru cbt twice long before this diagnosis, and I do use those skills to help deal with the depression and pain. Was wondering if you might have any advice on other coping skills that may help as well. I currently use deep breathing, visualization, basic yoga that i found for people with fibro. Thanks so much!
 
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Orchid_918 responded:
Thanks to all of your for your replies. I have to admit I teared up while reading some of them. It is so difficult to live a "normal" life with this condition. Because of the bad flare I just went through (starting to feel a bit better, thank god), I had to drop a class (got too behind), and quit my job. I had gone back to my old college job working with kids, but can't keep up with the physical demands of the job. On top of school it was just too much. My husband was supportive of the decision, but we are not sure how we are going to make ends meet now.
Thanks to all of you for sharing your experiences and advice. I do have a fighter within me, and I am learning to be patient with myself. My friends and family don't always understand. But at least I know deep down I am doing the best I can.

I don't know if any of you out there are also students, but this week I found out about the DRC (Disability Resource Center) at my university. I registered with them and they signed me up for a golf cart service to get me around campus when I am having trouble walking so I don't have to miss class. They also help negotiate accommodations and helped me talk to m y professor to get an extension on a paper that was due when I was having a bad flare. It was so encouraging to know that there was someone at my school who could help those of us who have these kinds of challenges.
I am trying not to beat myself up about not being able to keep up with all I had taken on for myself. I am working on learning to live within my own limitations and take on what I can handle while still allowing myself time and energy to cope with my fibro. Best of luck to all of you out there in similar situations.
 
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Margaret A Caudill-Slosberg, MD, PhD, MPH replied to zareksmom's response:
To zareksmom,
Not being able to be the mom ( wife, employee, student) we think we should be can be very challenging to our self esteem. The trick is always finding what you can do because you can drive yourself crazy with what you can't do. Raising a two year old boy is exhausting even without fibro! It's why mother's groups are formed or hiring a babysitter even when you remain at home so that you can get a break and the perspective needed to regroup. The coping skills you are already using are helpful with the stress of pain on the body and the mind. Other considerations are volunteering, because of the positive benefits of giving and starting each family dinner with sharing a simple pleasure or observation that you found peaceful, beautiful, enjoyable or made you laugh, let everyone take their turn. Having a "Panic Plan" posted on your refrigerator that lists the techniques or interventions that bring you immediate comfort allows you to mindlessly get a jump start on finding comfort without thinking about it. Hope these help. Best, Dr Margaret


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