Anyone out there have fibromyalgia that has made them quit their jobs?

Missy,

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I have had fibro since I was a teen. At the age of 28 it got worst. By the age of 43 I was out of work and filed for disability. It took a year and a half after 2 denials and finally got it on the third appeal. I lost a house due to loss of income. I had two children in my early 30's . They started me in my twentys on amytripoline. I gained 50 lbs in the first year. I took it for 12 years and it just didn't do anything any more. I was also being treated for TMJ and anxiety and depression. I take celexa 20mgs daily and Klonopin .05 mgs 2x daily. I also take celebrex to keep the inflamation less. I also have trouble sleeping. I am now 60 yrs old and really have suffered from this debilitating disease. Mental clarity is bad. Memory is poor. I have to write everything down. I did have a break-down back in 93, which put me in bed for 3 months. That was such a horrible time in my life. My children don't every remember me being normal. I was so active when I was younger, and everything had to cease. That was so hard for me to change my whole lifestyle, but I had no choice.

I am crying as I write you, cause I know how bad you feel. I did belong to several support groups. I have a brand new grandchild and haven't got the stamina for her. I feel so bad about that too. The guilt of losing a house, the guilt of staying home, and the fact that my children didn't really know their real mom just breaks my heart. I finally had to except the fact that there is no cure only drug to mask the real problem. I had to file for disability under Chronic Fatigue (which is part of the symtoms) because at that time They didn't recognize fibromyalgia as a disease but a syndrome. I was the first person who set a pressidence and did not have to show for a hearing in Mass. I don't know quit what to say to you Missy. You must try to keep stress down . Sure I know easier said than done. Life is stress, so that tells you how far that can go. I am so tied of trying different drugs. I am so sensitive To so many antidepressants, and anti-anxiety drugs I stay with the celebrex, Klonopin, and celexa . I have very little side affects from this combo. I search for years and have tried just about every drug out there. I have not tried Lyica, Cause the side affect is weight gain again. It is the new amytripoline, which I chose not to try. I gained enough weight. It is too new and I will not take . The long term use of this is not known. So, Missy, you are not alone, believe me.

I'm really sorry about the horrible luck and health problems you've been having. It can be really difficult to work full time and be "productive" with fibro, the pain, depression, anxiety, etc. I took about 4 months off from my job (on disability) and then 2 months working part time to build up my stamina to get back to full time. Same thing, very stressful job with lots of public contact and pressure. I just had to stop for a while. At the same time, it's not good to be isolated at home and to feel like you aren't accomplishing anything. That can make the pain and depression worse, in my opinion. It's a personal thing, I think, how much activity you can handle. I'm back to work full time, but I still miss a lot of work due to flares and bad days. It's difficult and frustrating. I don't really travel or do much on the weekends, so I will have enough energy and strength to get through my work week.

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I don't think that's a good way to live, but with the way things are right now, I feel grateful to have a job. I don't know what the answer is. I wish we could all find the miracle cure and be healed. I hope you work things out and find something that helps you.

I am a 51yr old RN, I've had Fibro since I was in my 20's- sometimes bad, sometimes just an irritant. I started a bad flare 6/27/09, haven't been able to go back to work since! I was only working 2 12hr shifts a week, but considering that going to the grocery store for 2hrs wipes me out, I can't do a 12 hr shift!
One of the crummiest parts is, I was like 7 days from meeting my pre-existing clause on my short/long term disability insurance!!! So far, we've gone thru our retirement investments and now my 70yr old mother, who lives with us, is picking up the slack. Feels pretty crappy at 51 to go to your "Mommy" when you need money!
My husband is already on disability, due mult back surgeries, so have been down that road before! Doesn't mean we look forward to it again. If I could just get my stamina back and return to work,even just 1 day a week would make a world of difference!

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One thing I would look into if I was you, are you being seen by a rheumatologist? Mine doesn't like to give narcotics, but he has me on Lyrica, flexeril,Ultram,Mobic plus I take fish oil and glucosamine/chondroitin. With all this, My pain is USUALLY controlled to 2/10. Pretty good in my book. If he could just get me my stamina, I'd be ecstatic.
And, you really should look into disability- you earned it!

Well I'm only 21 so I haven't had to quit a job yet really although I ended my summer job so poorly that I think they would've fired me if I'd stayed longer because they didn't like that I had to call in a couple of times because of the pain. It was a manual labor type job and I was determined to do my best so I pretty much drove myself to my breaking point almost. I've been in some kind of pain since I was about 12-13, by age 18 I had to have surgery on my knee but the doctor did that more as exploratory although he did a Lateral Release as well which did absolutely nothing at all, I was in a couple of car accidents which made my back worse although riding in cars for long trips has hurt my back since I was in about 8th grade, and then it got considerably worse in the middle of July09 which is when I began researching fibro.

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I was finally diagnosed with fibromyalgia in Aug.09 and then in Sept.09 a neurologist ordered an MRI which showed that I also have Chiari malformation which in simplified terms basically means that my brain is too big for my skull... literally. Since Aug. I've been on Lyrica and a number of other meds none of which really help anymore. I went to see a neurosurgeon this week who informed me that if my fibro wasn't responding to meds it is probably symptoms of Chiari malformation and not true fibro. Chiari malformation and fibromyalgia both tend to mimic each other so a lot of people get misdiagnosed because few doctors know much about Chiari at all so sometimes they end up telling people the wrong thing. I'm now scheduled to have an Endoscopic Chiari Decompression this May which might possibly relieve all my pain if my body responds correctly.

Anyways, my point was that I would advise you to beg for an MRI of your brain which is the only way to find Chiari; but if that's what you have, surgery might give you some major relief from a lot of your pain.

Hi Missy

Don't know if you are still 'tuned' into responses or not, but maybe this will help someone else.

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1) Disability - yes fibro ended my career as a sales and marketing exec when I was 45. I developed it when I was 43. Both my private disability and my SSI application 'sailed' through. I attribute this to incredible documentation. I kept track of everything and helped my primary care provider do the same. I did not leave it up to the doctors on the documentation - I got a copy of every report for every single thing i did and I submitted it in addition to whatever the doctors where asked to submit directly - though I found, in the end, it was the documentation I submitted they used to determine eligibility. Of course this was ten plus years ago - I am sure it is different today, except that good documentation remains important - including daily activity/pain charts. I cannot emphasize enough how powerful your daily tracking of what you could and could not get done, level of pain, etc - 'proves the point'. I went through at least four rheumatologists and two major medical centers (University of Michigan and John Hopkins). Have survived two cancer experiences I knew the drill with disease. Be relentless as quickly as possible. Pursue. Don't take no for an answer and if you're involved with a medical professional that tells you its in your head, laugh and say, "no kidding, if you had all this pain it would be in your head too" - and find someone else.
2) Accept it quicker than I did. For eight of the last ten years, maybe even nine, I pursued every treatment option known to man, woman, or otherwise. I tried everything, a lot of it a lot longer than I should have. I wanted to get back to work for so many reasons, and I refused to believe I couldn't 'lick this', like I did every other challenge life presented. I finally ended up at Mayo Clinic last year for a total of six weeks, the last stay lasted three in their pain rehabilitation center. It was there I finally figured out that I'd really done the best I could and now the new challenge was not 'cure', but balance. It's a disability, learn to work with it, not against it. The stuff Mayo taught folks was the way I lived my life. By the way - I highly recommend this center for people with any kind of chronic pain - Pain Rehabilitation Center - Mayo Clinic - Rochester, Mn. They are a bit brutal but they help about 75% of the people who go there.

I have been unable to work since 2005. I applied for disability through my employer at the time, but they fired me instead. Yes it is illegal, but after being fired and having two kids to raise, I couldn't risk the $1,000 retainer fee for a lawyer. It was just no win. I then applied for SS disability in 2006 and was denied. I kept trying to work, wanting to be able to support myself and my children, but each job I accepted I was fired from even before I could earn unemployment benefits. Most of these jobs I loved and really wanted to keep, but just could not hang onto them. I think I was in denial of my disabilities for a very long time. I had to reapply for SS disability last year 2009 because my Chronic Myofascial Pain came back with a vengeance.

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That and once again being misdiagnosed and mistreated by physical therapists as only having Fibromyalgia and not the Chronic Myofascial Pain caused them to prescribe exercise which is the last thing someone with multiple myofascial trigger points should do. I finally refused and asked them if they would get up and run down the street as a response to waking up with charlie horses in the middle of the night or would they grab the muscle massage and stretch it. Duh?! Myofascial triggers are like having multiple deep tissue charlie horses all over your body all the time. Don't understand why this concept is not being excepted. Massage and trigger point release by someone trained to do it does work, but there is nobody to be found in my city to help me. I live in a medium sized city like Toledo. No-one!!! Please if anyone is listening pray for me to get my SS disability award now instead of later. I know that I will eventually get it because I am disabled and my records and physicians can prove it, I just cannot wait another year n 1/2 to 2 yrs to get it. My children and I have been living off of $600.00 per month, in rent assisted appts, with trashy, crack dealing neighbors, food stamps & medicaid (thank god). I really need some people to pray for me. My kids and I cannot take it anymore. I can't take out the trash, do laundry, or go grocery shopping by myself. I would love to be able to afford to get someone to help me. My girls help out some, but they are teenagers and I am tired of the arguing. Love, peace, light & hope to all who are suffering and facing financial devastation in wait for SS benefits. There ought to be some company out there that will take %50 of your lump sum just to provide you with some income now. It would be worth it to me. It is unreal what we must endour financially while being sick and disabled. Its downright inhumane.

DEAR MISSY2 & OTHERS:

Missy after reading through and analyzing some traumatizing situations in your life, I have a few things to say but first & foremost I most tell you that you must be strong to have gone through such situations emotionally & physically - it seems to me that you have a strong spirit or motivation for something, possibly kids or loved ones, or even just for yourself? :P Anyway let me continue because it's important you read this to tell your doctor on your next visit.

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From what you've gone through physically through your ADULT LIFE there are clear indications of bodily injury, meaning your body has been damaged physically. The situations you've listed and other events that are untold is no-doubt one of - if not the single - primary reason for your pain & mental/physical condition. AS YOU WERE AN ADULT, IT'S CLEAR THAT MUSCLES, NERVES, AND BONE HAVE BEEN DAMAGED. I want to stress to you the importance of injuries and damages inflicted upon your body as an ADULT because as an ADULT your body has stopped doing a lot of cellular processes in which does effect the body's healing and process.

I'm going to put it this way. When you're a kid and maybe even a "new" adult, meaning an adult 18-21, your body is constantly changing, developing, and cells and processes are always monitoring, reviewing, and repairing your body. That all stops as a fully-grown ADULT - it's like cycles slowed down, your body doesn't constantly monitor itself if at all, and most-importantly things don't heal right, don't heal fast, and depending on the injury may never heal/fully heal. Once you're full grown and everything in your body to make it grow has completed their functions, it's like your body lives day-by-day as it is, in a sense.

From reviewing some of your injuries as an ADULT, and taking them into consideration by analyzing them, I can see that your pain is not being treated properly. I don't even personally believe that you're being diagnosed properly because of what I have told you about the body. I believe your pain is legit (not a mental problem) and is the result from injuries that never fully and/or properly healed - your body has been aging over the time and really your pain as well as your fragility is like driving with a pinhole leak.

Also from reviewing the trauma you've been through emotionally including some mental disorders, I do agree that you do have fibromyalgia, but it is not the primary reason for your pain - it only intensifies it. Your pain isn't caused by nerves, it's caused from your injury - nerves could stimulate and increase your pain though.

Anyway, I am not a doctor but this makes me really want to become one. Seems doctors don't care about patients anymore and don't understand narcotic opiate pain relievers are here to help relieve pain - they're the ONLY effective pain relief for BONE and the most effective! There are no substitutes for it & doctors need to kick liability and help patients live a pain-free life so that the patient can enjoy life.

I wish you the best Missy. If I were a doctor I would start you out on either 10mg Hydr

I was diagnosed with fibro in 2003 after suffering for a year with pain, severe diarrhea, migraines and severe anxiety. I was placed on many different meds and ended up on Cymbalta, Lortabs, Xanax, and Lotronex and finally Norditropin (human growth hormone). I worked in a hospital lab on the evening shift and was under tremendous stress due to cutbacks and hostile employees. I asked for a part time job, waited for 2 years and was finally forced to retire. I was never allowed to work part time, I have lost most of my income and am living on retirement and social security. I have also filed for workman's comp. Another girl there has also been diagnosed with fibro and is leaving also. Stress seems to be a major factor with this disease. It destroys the pituitary and affects the adrenal glands capacity to produce the hormones that help you to deal with stress, such as cortisol. I cannot take any type of cortisol as it makes me deathly ill.

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I try to avoid becoming stressed out by doing some type of exercise everyday, but not too much. My hobby before I became ill was working out, so obviously it did not help me to avoid getting fibromyalgia. The body can only take so much stress. It causes changes in the endocrine system which seems to be uncontrolable. My first clue that I was sick was pain and extreme fatigue. After working out for 30+ years I knew something was very wrong.

Dear Missy, If you haven't been able to work in over a year apply for disability now. I waited to find a doctor to say I couldn't work and to help me with my disability and now its to late. You work for it get if not for the money but for the Medicaid so you have health coverage. I was diagnosed in 1990 and worked until 2003 when I just couldn't get up anymore. I have taken it all and tried everything the doctors gave me. I'm on Savella, 50mg. at night along with Diazapam,Sertrline,Percocet,Potasium,One A Day Women and Gabapentin. I do feel a little less painful since I'm on the Savella and I actually sleep all night last night. First time in three weeks, I'm amazed.

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I watch all these fun raisers on TV all the time and awareness for Cancer,diabetes,MS,Lupus and so on. I've yet to see anyone raise money for research for Fibromyalgia. Its not like we can get out there to do it. We never know what kind of day we are going to have, to commit to anything.

The only advice I have after all these years it live. Do what you can when you can just don't over do it cause you'll pay for it the next day. Educate your family and friends how fibromyalgia affect your mind, body and soul. Take care of yourself and if your feeling down call someone and go to lunch are just get out of your house. Even if you just go out and read a book are walk to the end of your block just to clear you mind.

I'm still learning everyday on how to live with this. But, I have Fibromyalgia it doesn't have me.

Have a GREAT DAY

Teasie