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Adrienne Dellwo

To Work or Not To Work With Fibromyalgia & Chronic Fatigue Syndrome

By July 20, 2011

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Q:"I have watched my ability to do my job, e.g. getting projects done, responding to emails, working with people, answering very technical questions, going down the tubes. But I am very stubborn and persevere, trying to work harder in order to meet the requirements of my job. ... The frequency of bad days is increasing, creating the need to "push on through" and then working harder on the good days, thus triggering some more bad days. (By way of example, it has taken 30 minutes to write this email when it should have taken only 5 minutes.)

"So, when is it time to hang it up and go on disability? Do you just keep trying until you have completely failed and are fired? Do you struggle on until someone hits you in the head with the proverbial 2x4?" - Pete

A: That's a tough question for many of us with fibromyalgia and chronic fatigue syndrome, and one I wrestled with myself. I was like you and tried to just keep pushing myself, which of course didn't do my health any favors.

Two things combined to make me see that it was time to quit:

  • I realized my job was getting everything and I had nothing left for my children (who were 2 & 5);
  • I realized I was probably going to lose my job sooner or later because I was missing a lot of time and I was barely competent anymore, thanks to brain fog.

Some things to consider include: Are any positions available that would be lighter duty or fewer hours? Could a change in hours or other reasonable accommodation help you keep working?

If you do opt to file for disability, remember that you may be able to file while you're still working - which is a good thing, since it can take years to navigate the system. Here's more information on that: Filing for Disability While Working.

Best of luck to you, whatever you decide!

Work & Disability Resources

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Comments
July 20, 2011 at 7:46 am
(1) alana says:

well good luck w it. most of us won’t quit cause we think we need the money but most of all it’s cause it’s not our nature to not work.
so anyway – it’s the habit of persisting that gets us sick in the first place. work is also a habit. i stopped working once i could no longer stand. anyone still working who has fs and has to push the snooze button twice and if you have cuts in your skin that heal slowly – do not get to this stage! cut back on your hours. if you say ‘no i need the work/ money’ – well – you can’t work if you have zero health.
once you have zero health, it is very difficult to recover. anyway, if ou don’t hear this, please hear your body.

July 26, 2011 at 1:46 pm
(2) Pete says:

I agree with what you have said, especially the zero health. But this fibro thing is so tricky: one day you are up and can work productively 6-8 hours and the next day you feel like a zombie (and sometimes walk like one). Could it be somewhat a “guy thing” to push and push because that’s what guys do (“work through the pain, walk it off” are phrases I really hate now).
Thank you for your words of advice and encouragement. I really appreciate it.
Pete

September 15, 2011 at 4:07 pm
(3) Donna Dante says:

I wonder how many of us w/fibro are (or were) over achievers?! I know I always pushed myself to do better and take on so much by myself……I think it started as a teenager looking for approval! Just curious…

July 20, 2011 at 9:16 am
(4) Chubachups says:

I agree that it’s in our nature to be stubborn & keep pushing on. After all, with fibromyalgia & other such conditions that’swhat we have to do just to function every day!
For me, the pushing on thing went too far & my fibro pushed back. I damaged the ligaments in my back & was in bed for weeks. I haven’t worked since. My emoployers were great until that point. They changed my hours & got me a special chair etc. Even so, I wish I’d listened to my baody & my family & maybe stopped a bit sooner. I would tell anyone in a similar situation that I loved my job & it breaks my heart not to be able to work anymore, but when it gets to a point where you are just working, hurting & sleeping that it’s time to stop before you do more damage like I did.
I’d love to go back to work & hope that I can one day, but my health has to come first for now.
I hope anyone with a chronic illness who is reading this is healthy enough to work, but if not, try not to feel guilty or useless becuase of it. We can still contribute to society by loving & supporting our families & friends. That’s what matters most.

July 23, 2011 at 5:14 pm
(5) Tammy E. Garrett says:

I am like this, everyday I feel like I am pulling myself around, just trying to walk. Cannot believe how slow I am at work. I don’t pull my part and the miss alot. The only reason I am still there is it’s the state and the supv are trying to understand but Fibro is so hard to explain to people who have not study it and felt it, along with alot of other back problems. But you can’t just quit when you have bills to pay. I am so scared inside. It’s just a matter of time before I just can’t walk or move at all or they let me go. This article said you can file disability while you are working, I read you had to be off work for (6) mos before you could file. Do you know about this?
Have a good day.
Tammy

July 25, 2011 at 11:43 am
(6) patrice says:

call social security to find out the particulars of filing for disability. My hubby is self employed and had massive heart surgery;went to ss to file for disability and found out the rules for self-empl people are drastically different(& more stringent)than for everyone else. the only way to know for sure is call and ask. i have fs & cfs and quit my full time job; now work only 27.5 hrs per week unless we are super busy and i have to work more. this works out alot better for my health but bills and savings for retirement have suffered greatly. most every day i still have to push myself to do anything. i am 53 and get around like an old lady. fibro-fog: yep most every day to one extent or the other. i HAVE to work to help pay bills-not so we can afford new cars, vacations, clothes etc. no choice. one day at a time & w/ the Lord’s help;that’s all i can say.

July 31, 2011 at 10:20 pm
(7) Kari says:

I so identify with: “it gets to a point where you are just working, hurting & sleeping that itís time to stop before you do more damage like I did.” I have been on 20 hour work weeks for 6 weeks and then went on full leave since 6/13 and I was living what you describe and I know I still can’t sit even a half day now. I have nerve pain and pills help but put me to sleep. I struggle with the guilt because my husband is on my insurance. But, even on full leave, we have not been able to have a “normal” life. It is consumed by physical therapy and rest. We are not alone. Thanks for your post. It hit me precisely where I have been for the past 3 years, since a car accident.

July 20, 2011 at 9:51 am
(8) Kathy says:

I kept trying to push thru the pain and the fog until I just couldn’t do it any more. Got to the point of quit or be fired. I was able to get on disability but not before losing my house.
In hindsight I wish I had tried to find a part-time job and tried that as a last resort. I feel like it would have helped with my feeling of self-worth (in spite of a supportive spouse, I feel worthless). I’m not sure of course, but it might have prevented this downhill slide I’ve been on. Is fibromyalgia progressive or is it me?

July 22, 2011 at 10:34 am
(9) Emma says:

Kathy,
Factually, I do not know. Me, oh ya. It does seem to progress. I have been on disability now for 2 years & it is becoming harder & harder each day to get the energy to do simple things I use to love.
The strain on your loved ones is something to think about. Will you be a better wife, mother, etc if you are able to rest when you need to? I know for me, it was.
My boss actually asked me why I was “there some days & not on others”, even if I was Physically in the building.
Talk to your Dr. My FNP was exceptionally wonderful when my time came. I asked her if we were getting to that point & she said yes.
Do what is right for you & most importanly, have the support of both the Dr. & your family.
God Bless & good luck. Gentle huggs,
“M”

July 22, 2011 at 11:58 pm
(10) Jennifer says:

Kathy, I always read that it isn’t progressive, but it doesn’t seem that way to me. Two friends of mine with fibro are also saying the same thing.

Sometimes I wonder if it has progressed because of the constant pushing we tend to do. But when we don’t, there’s the guilt to contend with and that’s hard, too. Sorry to hear you’re feeling worthless. Your comments and participation helped me, so thank you.

July 23, 2011 at 4:50 pm
(11) Jordan says:

I was told many years ago by a specialist in the field it is not progressive. I would say it surely is, no doubt. I started with Fibromyalgia and medium fatigue. As a new mom, new job I pushed and pushed. After a few years of this I became almost completely incapacitated. Many, many years of “working’ to recover with the energy I could expend, many various proffesionals and lots of hope, I can see the light. I will never be the same, but newer. It is for sure Progressive.

July 26, 2011 at 2:02 pm
(12) Pete says:

I have had my primary physicial say that it can be progressive regardless of what you do. I have had the fatigue/fibro specialist say that it isn’t, as long as you take the time to care for yourself and rest. For me, the depression from the self-worth issues you raised seems to make it worse. I am in therapy and trying to deal with this. Don’t know if it is helping, however.

Pete

July 29, 2011 at 4:55 pm
(13) Stacey says:

I can totally understand where your coming from.. I have worked 12 years with Multiple sclerosis and done fine.. I started having a lot of joint pain and other pains.. NOT MS related… of course every dr tried to blame it on MS.. most dont even know the disease at all… so I was just diagnosed a few months ago with fibro… I feel like Im falling apart… I havent worked in 18 months and really.. that is killing my self worth / self esteem so bad… this disease really sucks… I hurt every single day!!! I wont mention the other odd feelings I have to deal with every day from the MS.. but that changes all the time.. so who knows which one is doing what… but yea Pete.. can totally empathize with the self esteem issues without working… I feel lost not working!!!

July 20, 2011 at 10:54 am
(14) Toni Bernhard says:

I tried to keep working after it was clear that the acute virus I thought I had was not going to go away and I was given a CFS diagnosis.

It was a nightmare for me. After two years of of going from the bed to work and right back to the bed, my body just broke down and said “No.” (I write about this in my book — how those of us who are too sick to work do it anyway because we refuse to accept this unexpected change in our lives.)

I’m so grateful that I was able to stop working without losing my house — it was a close call though and I know others aren’t so fortunate. After I stopped working, I felt worthless for several years. Then I decided I had to accept my new life and build from there.

That’s how I came to write “How To Be Sick” — I wrote it from my bed — but, as I said, it took several years of self-blame before I was able to see that it wasn’t my fault that I couldn’t work outside the house anymore and that I could, if I tried, build a new life.

That’s my experience with the issue of work/don’t work!

Toni

July 22, 2011 at 12:23 pm
(15) Kat says:

Hi Toni,

Thank you so much for the book you wrote…”How to be Sick”. Your courage, openness, and vulnerability you show are inspiring, and I think of you when I have a tough day. I have found myself experiencing joy through others more and more, and it’s authentic. It makes me feel good that I’m able to do that more and more, and less of poor me. :) My family all meet in Cape Cod every summer for a week or two, and my son Shane and I haven’t been able to go for the past two years because of my fibro, and finances that we don’t have anymore. I’m about to run out of unemployment in the next couple of months, and am in the process of filing for disability. I’m really not sure what I could do for work considering my pain levels, fatigue and pretty bad brain fog. I am however, starting to accept and embrace that this is a part of who I am now, and I now I just need to find a way to make money to support me and my son. Thank you again for your incredible book, and inspiring me to create a new kind of life definitely worth living!

July 22, 2011 at 3:22 pm
(16) Toni Bernhard says:

Oh, Kat. Hearing this from your just warms my heart. I’m so glad that my book has been helpful. You’re going through such a rough time. I hope the disability comes through. Just knowing that my book is by your side, brightens my day. I admit to still picking it up myself to find just the right practice for the difficulty of the moment.

Warmest wishes to you,
Toni

July 23, 2011 at 5:30 pm
(17) Tammy E. Garrett says:

I have a question on your post it says you have been drawing unemployment. I thought if you quit or got fired you could not draw unemployment. Does this have to do with medicaly not being able to work and the company can put that down for getting unemployment???

Would be grateful for any info.

Thanks,
Tammy

July 22, 2011 at 3:49 pm
(18) Shari says:

Toni,
Geez, you sound exactly like me. I have been told by my family and friends to apply for diability YEARS ago, and because of my pride and ego, I refused to become a person “living of the system.” I now realize how stupid that was. I am losing my house, my marriage is over, and things just basically stink. All the energy I have is spend on the care for my kids and keeping some level of normalcy for them.

I have also told myself for a long time that I will write a book before my days are over. I have journaled and feel like I have lots of things to share with others. I would love to know how you managed to make this happen for yourself.

This syndrome or disease has such a strange amount of irony to it. Folks that are sick with it are the types that want and need to push themselves to their limits, which only gets us in trouble. I tell people it is like being stuck in quick sand. The more you move the faster you sink.

I am still in the “blame” phase and really wondering if this is the quality of life for me, is life really worth living then?? I have always been an over-achiever and now I’m lucky to achieve one thing on my “to-do” list! I feel alone and worthless. Those are the emotions I feel, but my brain and logic no better than that…its just hard as many of you all know.

I would love feedback from anyone who has some advice, including you, Toni. I would also like to know if there are any “tricks” to speeding up the disability process.
Thanks for reading!

July 22, 2011 at 5:18 pm
(19) Toni Bernhard says:

Shari,

I wrote the book from my bed, using a laptop and a notepad. It was a long a difficult process, but the response it’s getting has made it worth it. I talk a lot in it about how to overcome self-blame. I know first hand about it because I had to overcome it myself.

I also talk a lot about the isolation and the loneliness. I hope you have a chance to read it. If you click on my name, it will take it to the website for the book and you can see if it looks like something that could be of help to you.

I wish I could be of more help with disability issues. I was too sick to even try for it when I left work so because I was in my 50′s, I took an early retirement. It led to a lot of financial strain because it was less money, but I was too sick to do anything else. I’m told that getting yourself a good disability attorney can make a huge difference in being successful. Hopefully others here can give you some good feedback.

Please don’t blame yourself for what’s happened. We’re in bodies and they can get sick and otherwise disabled. They’re doing the best they can to support us. It’s nobodies fault. It’s just life and it will happen to everyone. This is just how it’s happened to us.

Warmest wishes,
Toni

July 22, 2011 at 7:07 pm
(20) Cindy says:

I just bought your book. It’s funny I have been trying to study Buddhism, but it’s so hard because I can’t remember a darn thing. And I have an eye disease that makes it difficult to read. I looked for your book on audible. com first. I wonder if you have thought about doing an audible book. Anyway, can’t wait to read it. As I am fighting with my self so much these days.

July 22, 2011 at 8:39 pm
(21) Toni Bernhard says:

Hi Cindy,

I’m glad you have my book. Most of the chapters are short and they have lots of headings. And you can skip around if you like (see the Guide to Practices in the back…you could start that way).

I tried to do an audiobook but I’m just too sick. I thought it would be easy but it’s not and my publisher doesn’t produce them on their own. But Kindle has a text to voice feature so if you get the book on Kindle, you can have it read to you. You can even adjust the speed of the voice and if you want a man or a woman. It’s a bit robotic but I’ve listened and it’s better than nothing.

I wish so much that I could do an audiobook but, for now, that project is on hold.

I hope with all my heart that you find my book helpful.

Warmly,
Toni

July 23, 2011 at 12:01 am
(22) Jennifer says:

Toni, I recently ordered your book for my Kindle and have been reading it this week. So glad you wrote it and I appreciate the struggles and doubts you went through to write the book. Thank you! A koan in the book really helped me (about the mind/body).

July 23, 2011 at 11:18 am
(23) Toni Bernhard says:

Dear Jennifer,

I’m so glad that you have my book and that you’re enjoying it. Thanks for letting me know! Every bit of good feedback gives me a lift.

Warmest wishes,
Toni

July 25, 2011 at 1:32 pm
(24) Esther says:

Hi Toni,

I’m sorry I wasn’t able to hear you at the Insight Meditation Center in Redwood City and I thought that you’re going there at all was a selfless sacrifice on behalf of all of us with CFS. So I thank you for that.

I’ve read your book and need to read it again. What it most immediately helped me with was finding acceptance of the fact that I can no longer meditate. Meditation was my answer when I first improved from my initial illness. I couldn’t go on with my career and had always had as my goal to keep growing especially spiritually. So I began meditating using the passage meditation of Eknath Easwaran. Living in the Bay Area, I was even able to go to his Tomales ashram many times both with and without my children.

When I could no longer memorize passages or remember them well, I tried to use insight meditation but never could establish myself in the practice. Your admission in your book that you could no longer meditate seemed to give me permission to let go of this expectation. There are many other ways I’ve found, including mindfulness in my daily life, to continue my spiritual journey.

I also seemed to feel guilty about spending my days entertaining myself to pass the hours and have come to see that I deserve to enjoy myself as much as I can. (Puritan work ethic not just for boys/men.) Plus it’s much better for me that ruminating on myself and my situation.

And while opera is not my cup of tea, I’m spending more time listening to wonderful music that I enjoy so much.

As I’ve become less self-centered and full of self-pity, more people come around and I’m less isolated as well.

I’m 64 now and I don’t really think the illness progresses as much as it fluctuates and changes. It seems my once up-regulated immune system may be under-active now. And naturally everyone slows down as they age from 39 to 64.

Blessings to all of you out there. Esther

July 25, 2011 at 1:49 pm
(25) Toni Bernhard says:

Hi Esther,

I’m so glad to hear that my book was helpful to you, especially that it gave you “permission” to not be meditating. Yes, we do what we can within the limitations of the illness and I’m just so glad to read that you’re allowing yourself to do what you can without self-recrimination. It’s a daily practice for me — a continual letting go and being nice to myself. I hope you continue with it too.

Warmest wishes,
Toni

July 20, 2011 at 11:55 am
(26) Pete says:

Yes, I’m the one who sent the original email and I appreciate Adrienne’s kindness in posting it (I would never have posted it myself due to shyness). I appreciate all of the comments so far. There seems to be a consensus that getting out before you can’t do anything is the way to go.

My problem, and I own it, is the puritanical work ethic that was drilled into the boomer generation, especially the boys/males. (I also know that many women were raised the same way so don’t call me a sexist.) Another big problem is the perception that FM/CFS is a “womans’ disease” (which is a crock) or that “it is all in your head” (who of us haven’t heard that male bovine fecal material?).
Additionally, boys/males grow up with coaches, teachers, parents, etc that keep saying, “Play through the pain,” “no pain, no gain,” and “boys don’t cry and if you don’t stop I’ll give you something to cry about.” My favorite as an adult is the Comparison Game: “You think that’s bad? I had (fill in with something worse than FM/CFS) and I’m fine.”
It also amazes me how, when you ask for a reasonable accommodation (modified work hours, reassignment of duties, rest breaks, etc) the duties you thought were secondary to the job (which can be modified under ADA) become essential functions of the job that cannot/will not be modified, and if you can’t do them, you’re out. I don’t dare tell my bosses. I’m in law enforcement (still a male dominated profession) and there really are not a lot of duties that can be reassigned or other jobs you can move to. My worry is that I’ll be “outed” because of performance and be figuratively “run out of Dodge.”
Thanks for reading these ramblings. I hope there are more postings to come. I need the encouragement to do what is best. By the way, my mind and body are not speaking to each because of an earlier argument.
Pete

July 20, 2011 at 11:46 pm
(27) fogmom says:

I decided to stop working when I had to write down words I used everday. I would hang them on my wall. No one thought anything of it because I was in the computer department and eccentric anyway because I was doing a “mans job”. Another problem I had was tearing up and crying (I never used to cry, about anything) confrontation was just part of the job. My biggest problem aside from pain and fatique was not being able to speak (remember the simplist words). Everday was too much, when I started thinking I wish I would die I finally listened to my husbands nagging me to quit. I wish I had known you could apply for disability while you were still working. I loved my job btw.

July 23, 2011 at 2:00 pm
(28) georgia says:

Hello fogmom,
Both you & Adrienne mentioned that one can apply for ssdi while still working. I was under the assumption that one needed to be out of work for one year before applying.

Please elaborate on the subject.

Thank you,
georgia

July 29, 2011 at 5:00 pm
(29) Stacey says:

Wow our issues are SOOO similar

July 21, 2011 at 12:27 am
(30) Marie says:

I tried so hard to keep my job. I have always worked and like you did not want to give up. I was on FMLA because I missed so may days because of pain and fatigue. Sometimes I would make up other reasons to stay home b/c I was embarrased to call and say I was in pain AGAIN. In early Feb. I developed an orbital pseudo tumor behind my right eye. Due to the vision issues and treatment for the tumor, I could not return to work. My company was very good to me and tried to hold my job for me. I knew though that I should could not do it anymore. Very hard decision. I am single so I have no other income. I have applied for SS Disability but it is taking so long to get an answer. I am praying I don’t lose my house. I truly don’t need any more problems to make this nightmare worse. Praying for you to make the right decision for you. My decision was made for me when I could not see for several months to drive, read or work on the computer.

July 22, 2011 at 4:13 pm
(31) Shari says:

Hi Pete…
just wanted to say good luck and to tell you to know that you are not alone. I was in law enforcement for nearly 20 yrs and I know EXACTLY what you are experiencing. I would find a good attorney to handle your SS disability claim. I am also a disabled military veteran, so I do get a little income from that, but not enough to sustain.
I think that a lot of us need to quit hiding our health problems and educate the “morons” who say things like you described. I have heard it all and it gets to the point that I am hesitant to tell anyone, or even an ER doctor, that I have FMS/CFS/IBS/RA, etc…..because they are going to think it’s all in my head and I’m probably a “drug seeker.” (a term I have recently learned that they use.)
I just think that if we start speaking up more about this(and keep in mind that we are not only speaking up for ourselves, but for all the others who have these health problems) that eventually it will more understood.
And the most important thing I could share (if I could go back in time and do things differently) is to not wait until it’s too late. As soon as you realize working is becoming more and more difficult, start the process! And document EVERYTHING!
****PS to Val: I totally appreciate your attitude and tenacity, but please know that those are the exact things that get us in trouble. I refused to let this rule my life and the harder I tried the worse things became. Listen to your body and don’t fight with it because IT WILL win.
(am I the only one who wishes there was spell check on this?)

July 22, 2011 at 5:05 pm
(32) RebelRat says:

Shari: I, too, have learned about the docs’ term “drug seekers.” I suffered a migrained-induced TIA (a mini-stroke) at age 40 last November — thanks, fibromyalgia! — and while the ER folks were *very* attentive and treated me very well, I *did* get some crap/flak from the nurses on the floor when I asked for my regular pain meds, and I also noticed on one of bazillion bills I got that they tested me for every drug under the sun. Really? I told them I have fibro and exactly WHAT meds I take — including my narcotic pain med and my muscle relaxer — and wasn’t asking for anything I *don’t* already take. But a couple nurses, who came into my room together, made me feel like a criminal for asking for painkillers that I normally take — which the hospital I was at didn’t have, BTW, so they ended up giving me something stronger. I was really insulted. When I said so, their explanation was that, because I had kept asking for my painkillers in ER (duh — I HAD A MIGRAINE, WHICH HAD JUST CAUSED A MINI-STROKE), they were “concerned” I might have a “problem” and I “needed to be completely honest” with them. My reply was that, to be completely honest, I’d rather have a Dilaudid infusion into my IV than my regular oral Norco, since that was stronger and would work better and faster. I smirked, they looked shocked, said they’d order my Norco in the strength the hospital *did* stock, and stalked out. *sigh* I guess what I’m trying to say here is that, if we fibro folks have THIS much trouble just getting our regularly RXed meds IN THE HOSPITAL, how hard is it getting disability when it becomes absolutely necessary to stop working? That’s another fear I have: As a professional writer, will it be harder for me to *get* disability? And how does one choose a really good disability attorney, which I assume you really need to have to ensure you GET disability and get it in a timely fashion? Ugh, so many questions — I’m sorry for another looooong post! :(

July 26, 2011 at 2:16 pm
(33) Pete says:

Shari, Thank you. But as you know in law enforcement, if we “come out” with a chronic problem, other officers tend to shy away from you, you get moved to what is basically a clerk job or even worse, the front desk.

With regards to drug seeking, our state has a database that any doctor can get into and immediately see the patient’s medication history. In some of the meetings I’ve been in several states have the same kinds of systems. ER docs are the worst: went in with a broken ankle, they diagnosed it as a sprain, wrapped it, told me to ice it, but because of my drug history I needed to take just acetominophen because it seemed that I had a “narcotics problem.”
When I explained that I had fibro and that perceptions of pain are different, he looked at me like I was some kind of raving lunatic.
Fortunately, I got in to see my primary physician who diagnosed the break, put a cast on it, and gave me the meds I needed to get through it.

(No, I wish there were spell check, too)

Pete

July 22, 2011 at 10:12 pm
(34) Ruben says:

Pete
I am a Gulf War veteran and was just diagnosed in Dec. 2010 wwith CFS. My primary VA doc would not listen to me, he would say it was stress and anxiety and would say it was my PTSD and escort me to mental health. I was very frustrated until I was selected for a study for gulf war vets in Georgetown University Medical Center in D.C. I was given all kinds of tests and gave all kinds of blood. I spent 4 days there with Dr. Baraniuk and his staff. My symptoms seem to overlap with RA and Fibro. I have been struggling already with PTSD at work and being covered under ADA. I have been on FMLA 3 years in a row I am not going to be able to work anymore. I struggle to get out of bed because I’m so tired and sometimes wish I had died in combat then go thru this stuff. I’m 41 yrs old.

July 23, 2011 at 5:41 pm
(35) Deb says:

Prolonged stress can contribute to PTSD, and I think that had some effect on the CFS I have. I take my meds and supplements, and each day I focus on what I can do that day without worrying about the other stuff. I enjoy my days better that way, and I think it helps me to manage my life better. I really used to sweat the small and big stuff. I was so devastated thinking there was something defective about me, because I could not ‘exercise’ to get better or ‘make’ myself get stuff done. I would be interested to know how many people that get CFS have prolonged heartbreaking stress in their lives.

July 25, 2011 at 1:13 pm
(36) Esther says:

Hi Ruben,

Sometimes I felt that I’d rather be dead in my 25 years of illness but that has all changed for me now. I want to live! Because despite my body’s condition, I still find joy in this world. How?

By accepting (but not liking) my situation and thinking of what I can do for others. I spent years in self-pity which is, in my opinion, the most destructive emotion, and I work diligently to stay out of it.

I am in a 12-step program and a recovered compulsive eater. I think the steps might be helpful to people with CFS and perhaps other illness. One of the famous quotes from the Alcoholic’s Anonymous Big Book is “acceptance is the answer to all my problems today” which is very similar to the Buddhist philosophy Toni writes about.

And another is that once recovered 12-steppers “primary purpose” is to help those who are still suffering. I think the 12 steps might be a way we could all help ourselves and each other to cope with our illness. And there is nothing better for self-worth than realizing you’re helping someone else. (It is important to note that the 12 steps work for believers and atheists alike.) Any comments?

Ruben, it may not be the life you wanted but it still can be meaningful and joyful. I wish you well. Love, Esther

July 26, 2011 at 2:51 pm
(37) Pete says:

Ruben,
First, thank you for your service from one vet to another. I am a Viet vet. I am with you on the PTSD, stress, anxiety, and so forth. The VA at this point in time is not the vet’s friend. The help they give seems to be what you would get if hurt/wounded at a forward fire base. It’s just basic medicine of patch them up and send them out. It took them years to acknowledge Agent Orange. They are trying to avoid giving diagnoses of PTSD and CFS.
How are the nightmares? The exaggerated startle response? The continual scanning of the environment for threats? The need to sit in a restaurant where you can see the door and no one can come up behind you?
There are meds that can help with these reactions to PTSD. Unfortunately, we will always have the memories. I think the hypervigilance of PTSD is a big factor that contributes to CFS/FM.
My brother in arms, hang in there. The healing can occur. Work on getting enough sleep first. There is a med called Terazosin that, taken at bedtime, can really reduce the nightmares. Interestingly enough, this was a VA study that discovered it.
You can make it through this. Check and see if there is a Vet Walk-In Center near you. Talking it through with others really helps.
Alcohol and drugs will not help. Worse still, don’t off yourself. Hook up with someone you love and live for them if not for yourself. Recognize that offing yourself will hurt this person, and we never want to hurt others. I live for my grandkids. It gets me though the dark valleys we all pass through.
Yes, it would have been easier for us if we had died in combat. But we didn’t. We were spared by some miracle because we were supposed to do something that would make the world a better place. We mourn and honor our brothers and sisters who made the ultimate sacrifice. But the truly brave are the ones who keep fighting, one day, one hour, one minute at a time to stay alive.
Take care, my brother.

July 23, 2011 at 12:07 am
(38) Jennifer says:

Pete, I know several men in a fibro support group and I think it is harder for men to come forward and speak about fibro. Our society seems to expect men to be tough no matter what.

I grew up hearing the same work ethic things and feel it has added to my self-blame when people say things like that. (Oh, yeah, well so and so had this and he went back to work, etc.) We’re all individuals and judgment doesn’t help us! I had similar issues with reasonable accommodations years ago, although I was working in an office and think they really could have accommodated me. In retrospect, it was a huge company and there weren’t even any employees with visible disabilities working there. Odd….

July 26, 2011 at 3:00 pm
(39) Pete says:

Jennifer,
It’s what is called in some circles as “The First Liar Never Has A Chance.” For example, if you claim to have caught a 5 pound trout, you’re stuck with that. You will always be outfished. By the time everyone is done, your trout will look like a minnow when compared to someone’s claim of catching a whale on a ten pound line.
Guys seem to see illnesses, wounds, fractures, etc as almost badges of honor. The trouble with fibro is that there are still a lot of people who don’t think it is real or that it is a “female” disorder. When you are sicker than a dog and just want to lie down on the floor and rest, all you have left, it seems, is your masculinity.
I’m with you. That work ethic thing really adds fuel to the fire of self-blame and feeling you are being punished because you just didn’t work hard enough. It is a lie. Probably the biggest lie we were taught as children. Look at the damage it has caused. I agree, I think it aggravates the fibro and cfs.
Thanks
Pete

July 24, 2011 at 6:46 pm
(40) Kristin says:

I got FM when I was 15. My doctor told me to behave the same way as everyone else because it would never go away. I worked, never called in despite the fact that it was daily never-ending torture, went to school, and became an R.N. I always wondered if I would feel better if I didn’t have to work (BTW studies show that people with FM who work vs. those who don’t actually have the same or better function.) After I put my husband through school and got pregnant with my 2nd, I cut my hrs. way back (A mere 2-4 10 hr. shifts/mo). This is how much I’ve worked (besides writing for About.com from home) for the last 5 1/2 yrs. My FM has gotten WORSE. Looking back I think I functioned best when I was working about 24 hrs./week.

My bro. was diagnosed about 4 yrs ago. His performance at work declined to the point where, like you, he felt it was quit or be fired. He went on disability but after only a few months it was taken away. Ironically, in an effort to treat the FM, he started riding his bike. He was photographed by someone from the insurance co. and bye, bye, disability. He did fight it but no luck. Unable to get SS as well. The financial difficulty has been horribly stressful and his condition, too, has gotten WORSE. I know that if he could take it back he would have done everything possible to keep his job.

Your decision is your own and based on YOUR situation but, if it were me, I would try to go part time and see how that goes. Make sure you’ve considered all your options and the consequences of quitting before you do. Good luck!

July 28, 2011 at 10:35 am
(41) Linda says:

Ilove your last sentence, Pete. Can I borrow it?

July 29, 2011 at 9:05 pm
(42) Pete says:

Feel free! Thanks.

July 20, 2011 at 2:04 pm
(43) cynthia says:

There is no question, “to work or not to work”. I just can’t work! Not physically able…period. I am very fortunate that I have a supportive husband who thankfully has a good job.

July 20, 2011 at 3:06 pm
(44) val says:

Diagnosed and 19 with fibromyalgia……Refuse to let this disease take anything else from me…It already has my ability to sleep and my chance at being a teacher…I will not give up I wil be a productive member of societyat all costs…that means working and volunteering

July 22, 2011 at 3:32 pm
(45) Marja says:

Val,
Good for you! I strongly commend your fighting attitude! However, there comes a time for some of us when we simply physically CANNOT work. There are no ifs, ands, or buts about it.

I hope that this never happens for you, but do realize it is a possibility.

July 21, 2011 at 1:02 pm
(46) Steve says:

I am in a very high stress IT management position requiring being on call 24X7X365. My employer has been gracious with working around my limitations but it is getting to the point that I am not able to do the job to my standards. We have found another job in the company for me that will take away the on-call and employee management. It’s still a big job but should ease the stress enough that I can keep on for a while longer.

I am also building a web business that I hope may be my next step in job related stress reduction. It just hasn’t developed to the point that I can support my family on it yet.

July 21, 2011 at 8:10 pm
(47) Donna says:

I was forced into disability after a serious foot injury/surgery kept me off past the fmla point and I was fired from my job as an Occupational Therapist. I worked before that but it was all I could do to get home and collapse. I was able to get disability, SSDI fortunately but it is still tight. Also the latest is a knee replacement and possible additional foot surgery. I really think that was all compounded by my working in pain and my body breaking down.

July 22, 2011 at 10:18 am
(48) Peta Ennis says:

You are very fortunate that your government recognises FMS as a disability (as does the UK). Here in Australia it hasn’t even been accepted as a real illness yet, let alone a disability. A doctor who specialises in hands, who did my carpal tunnel surgery, argued with me that it was just a name given to a condition which they couldn’t find a real cause for. With the medical specialists having that sort of attitude, how are we supposed to convince the government of anything different.

July 23, 2011 at 12:40 am
(49) Mandy says:

Hi Peta, sadly we have the same situation here in New Zealand as you do over there in Australia, Fibro more often than not is treated as a throw away diagnosis and as for getting a benefit for fibromyalgia – forget it.

July 23, 2011 at 2:29 am
(50) hotyn says:

Dear Peta,
Hi, I’m from Australia too! Currently looking at trying for disabilty pension, due to FM ( severe), OA ( 1 knee replacement and 1 torn meniscus in other knee- both this year) Inflammatory arthritis and now carpel tunnel, just Dx… I am for the 1st time thinking I can go no further with work but in too much pain everywhere to keep going BUT have no idea how to apply for pension and how to convince them that every thing I say is the truth!! any ideas
Lynne ??

July 23, 2011 at 8:26 pm
(51) Peta Ennis says:

No ideas, sorry. But I had a double carpal tunnel surgery 18 months ago, only to fond out later it’s another symptom of FMS. I have also recently been diagnosed with Heamochromotosis, which means…….basically…more pain :(
I don’t understand why we can’t a) get recognised as having a disability, and b) get free flu vax……..

July 22, 2011 at 10:24 am
(52) Michele says:

I have fibro and RA, I am finding it hard to function at work, it is getting harder every weekend , I work one shift that is 48 hours long. My doctor wants to put me off on a short medical leave, but there is no one else to take my place at work. I am a care giver for a gentleman who is disabled. I am not sure what I should do….for my health I know I should take the leave, after all it is not like it is forever, just until my doctor can get my pain and other symptoms under control, but there is no one to look after my client on the weekends…..?

July 22, 2011 at 4:18 pm
(53) Debbie says:

Michele, I am a NURSE, in the South of the USA and I STILL hear Docs say that Fibromyalgia isn’t a REAL disease! Then another Angel of a Doctor is letting me try Hyperbaric Chamber Treatments to see if they will help. I have only been in a handful of times and it takes a LOT of ‘dives’, and commitment, but I am doing it! I just want to cry (and sometimes I do) when they are so nice to me and put me in the chamber for my dive. They are SO KIND! My marriage broke up, in part do to this damn FM, and I just don’t want to give up anything else. I am only working 25-30 hrs a week right now, no insurance, and I come home and nap. I am pooped all the time. And as for remembering things…..what was I saying?? O yea, can’t remember ANYTHING, anymore.

July 22, 2011 at 10:42 am
(54) Tipi says:

I have been diagnosed with FMS for about a year & have had increasing disability with chronic fatigue, fibro fog etc to the stage where I have been unable to do my job as a senior lecturer/program co-ordinator. I can barely even organise myself any more.
I now have a new doctor & I am very impressed – he really knows about FMS & has obviously had experience with it (he doesn’t need to look things up all the time).
He has tried a couple of drug combinations that haven’t worked but has really impressed me with his encouraging mantra that we WILL find one for me and then I can be back in control of my life.
So – here’s what I am on on:
Celebrex 200 mg daily
Fish oil & Vitamin D
5mg Norspan patches weekly
25 mg Endep at night
75 mg Effexor at night
Panadol Osteo every 9 hours

The plan is to gradually get of the Effexor & increase the Endep a bit because I am having a really good response to this – sleep patterns are improving & I don’t feel so dopey :)
I know Norspan isn’t the most ideal option, but it is really helping me & if I can move more & maybe exercise & lose some weight, then hopefully I can get off it in time.
Anyway, this is only day 3 of this combination & the improvement has been phenomenal – my husband just cannot believe how must better I looking & moving.
Think I might just be back at work too before much longer – fingers crossed :)

July 22, 2011 at 8:25 pm
(55) RebelRat says:

Has your doc considered trying you on Topamax for stiffness/pain and Savella? Those have been my godsends, since I suffered severe/disabling side effects (and got no benefits) from Neurontin and Lyrica (e.g., narcolepsy, severe swelling, etc.). I also take Norco for pain and Baclofen (a muscle relaxer, which is actually no longer working very well, after being on it for two years). I also take 2000 IU of Vitamin D and a malic acid supplement daily, plus milk thistle for liver support. But the Savella and Topamax (along with the Norco) have been the best things — although I will say that the titration period onto the Savella was pretty tough and I did need an anti-nausea RX (Phenergan) for it. However, it was totally worth it, because Savella does work for me whereas other meds have not.

July 22, 2011 at 10:45 am
(56) Marilyn says:

Pete
I worked for same company 31 years and i pushed on until i
found i would go totally blank and i still do and after approx 1 hour of work i needed to sleep i was suffering fatigue
and with a lot of time of work i decided to resign as was unfair to my fellow workmates and company as a reliable pperson i had become totally unreliable
I went on a disability pension with no problems my only problem was filling in the paperwork and as u said instead of taking a few hours it took me 3 days

July 22, 2011 at 3:38 pm
(57) Catherine says:

I struggled with trying to keep working for over a year, and my boss was very kind and understanding all during this time. We tried cutting out certain tasks, she took over ones that involved lifting and moving things (I worked in an adult learning center and couldn’t even set up tables and chairs for courses). I used up all my sick days in one month; we switched my hours to part time; then to less than part time … and finally ended up hiring a replacement when we both could see none of this was making a difference to my ability to do my job. In the last few months of work, I went in only to train my replacement. I finally had to stop working at Christmas 2010; and although I had applied for disability several months before, it still took another five very difficult months before I qualified for provincial disability. I’m still waiting for a response to my appeal to qualify for federal disability (I’m from Canada). Leaving my job was one of the hardest things I’ve ever had to do – I loved my work.

July 22, 2011 at 3:43 pm
(58) Donald First says:

There is more thn just Social Security disability, many employers have Long Term disability plans, You need to be careful here as many insurance companies consider thgis a Mental Illness. Mental Illness usually has a limitation of 2 years. we hired an attorney right away. and were approved almost immediately on the first attempt. She went on leave in Frbruary and she got her first check in October.

July 22, 2011 at 4:11 pm
(59) Nancy says:

I worked for 8 years before I was “encouraged” to take an early retirement offer. My absentee record was such that I was sent to Human Resources to discuss my issues. And my absenteeism wasn’t because I was too tired – I was too sick. I’d have bronchitis for weeks and when it would progress to where I had a fever, I’d stay home. Or I’d get all kinds of weird infections.

Anyway, this was a long time ago and things have changed. People can sometimes work from home. Had I been able to take advantage of the working at home that was offered after I took early retirement, I might have been able to hang in longer.

But I still regard myself as very lucky. My children were grown, my husband stuck it out with me, and I’d worked long enough to earn a pension….albeit a small one. Once my social security pension kicked in, it was better because my SS check was larger than my work pension.

If you belong to a support group as I do, or you know of one, try to find out if they ever have someone come in to speak on this issue. Either a rep from SSDA or a disability attorney can give you the opportunity to ask questions. We have several excellent attorneys…one of which has a web site.

Good luck to those of you at that stage. I’m at a new stage of having to start looking after a husband with multiple illnesses including cancer in remission and early dementia symptoms. We’re in are early 70s so we have aging on top of it all. I’ve have ME/CFS & Fibro for 26 years.

July 22, 2011 at 4:34 pm
(60) RebelRat says:

I was diagnosed with Fibro and Myofascial Pain Syndrome in May 2009, at age 39. At the time, I’d been with the same company for 5 1/2 years, and had a great relationship with the CEO. But once the CEO realized that my FMS/MPS weren’t going to “just go away,” she turned on me. I was already going through some difficult personal issues besides the FMS/MPS (e.g., a very difficult divorce that caused severe financial problems). Instead of being understanding, the CEO assigned me MORE work and when I couldn’t complete it without overtime (the option of which was also taken away at the same time), I got my first write-up ever at that company. Long story short, I was wrongfully terminated and did receive a settlement from the company. I’ve been out of work for more than a year now, although I did have a short-term contract last year that allowed me to work completely from home. That contract made me realize how much of a toll this stupid FMS/MPS has taken on me physically. I’ve been completely out of work for the past eight months, and while I would ideally like to find a job that would allow me to work from home, in this wretched economy, it’s just not possible, especially in my industry (I’m a writer. Which brings me to the *real* purpose of my *very* long post: I’m single, live alone, and have no possibility of giving up working right now. I’m going to have to just suck it up and work wherever I can find a job, no matter how much it exhausts me or increases my pain levels. But scariest of all, most employers drug test and with all the meds I take, I’m terrified that, if passing a drug test is a stipulation of GETTING hired, I’ll be thrown out of the pool right off the bat (althoughI’ll be given another reason for not being selected). I *want* to work — I *HAVE* to work — but at what point do I throw in the towel?

July 22, 2011 at 8:48 pm
(61) Candy says:

If you have a legal prescription for it, they can’t use that as a reason to turn you down. Drug tests are to test for illegal drug use. Now that doesn’t mean that it won’t influence their decision & that they won’t claim another reason (legal reason) for not hiring you, but *technically* the use of legally prescribed drugs cannot be held against you.

July 22, 2011 at 4:55 pm
(62) Teresa says:

I’m like many of you that push yourselves into sickness. I’ve been doing this for years! I’m on my 3rd try at disability, as my other two were denied. The 2nd case went to court to appeal the appeal judge’s answer. I had a judge who was new to disability and didn’t understand that just because someone can work alittle, doesn’t mean they can be gainfully employed. In fact, she said my doctor and I exagerated my symptoms. So…I still push myself and several days this week I hit “tilt”. Like when you hit a pinball machine too hard and it freezes up. I end up going to sleep, because I can’t handle anything else.
Sorry to ramble on and on. It’s Friday, and I’m tired!! If my soc sec disability would just come through, I would have a cleaner house, my family would have quality time with me, and life would be enjoyable. Now, after all that, I need to go take a nap. lol

July 22, 2011 at 4:59 pm
(63) Sue says:

Be careful about switching to reduced hours/reduced pay, because it may count against you for long term disability. If you get half pay for half work, and you later realize that you can no longer work, then (unless you’re working at a very enlightened organization) you are most likely to receive half the disability benefits you would have been entitled to if you had gone on disability before cutting your hours.

July 22, 2011 at 6:59 pm
(64) RebelRat says:

Hi, Sue: Would you happen to have any recommendations for someone like me, who’s basically self-employed/unemployed? I’m freelance writing at this point, have no benefits at all. Of course, I’m still looking for a “real job,” but as I said in my main post, I’m seriously concerned about being able to find one not only due to the economy and my profession, but also because of the meds I take, not to mention the physical/emotional/mental toll it will take on me when (if) I *do* get a job. I really *want* to continue working — copywriting and editing is my passion — but with the way the fibro/MPS is progressing, I have fears that I don’t know how much longer I’ll be able to be in the workforce on a FT, or even PT, basis. I’m so sorry to sound like such a whiner, so everyone, please, please forgive me — I’m just terrified because I’m single, live alone with no family I can rely on, and am in danger of becoming homeless in the next two to three months if I don’t secure a job. I’ve thought about filing for disability several times in the past year, not because of my financial situation, but because of my health, but . . . I feel like that’s . . . giving in to fibro . . . letting IT own ME, letting IT control ME, rather than the other way around, which is what I’ve tried to avoid vigorously since my diagnosis two years ago. Does anyone have any thoughts or advice for me? I’m totally open . . . thank you so much, and again, I apologize for complaining so much. I’m just terrified, and frustrated, and unsure what I should do, especially since I have no health insurance, and my pain management doc has told me that he will not deal with anything to do with disability; if I want to go that route, he says he’ll refer me to another doctor to deal with that.

July 22, 2011 at 7:45 pm
(65) Shari says:

RebelRat,

File! With all the factors you mentioned, it sounds like you don’t have many other options. I completely understand your apprehensions in the past, about it owning you, (I was the same exact way) but I learned the hard way that it is not worth waiting and hoping for a miracle. It’s been two years. Get the referal and start the process as soon as possible.

Good luck!
Shari

July 22, 2011 at 5:57 pm
(66) Cindy says:

For me I had nothing left. It was even like making up my mind it just had to be. I think the best thing you can do is if you are at a job that has disability start the process. It takes a while. Unfortunately the place I was working for went under and I wasn’t able to get disability with work. So I ended up with government disability, which is crap. If you can get disability with work chances are you will get more money. Hire a lawyer if you have to. I did and it happened much faster.
Good luck.

July 22, 2011 at 6:13 pm
(67) Colleen says:

I waited too long to give up my job. My health got progressively worse to a rather bad extent. I had a very difficult time getting any medical help for over a decade. It didn’t help that doctors in my community didn’t believe in chronic fatigue and that I was misdiagnosed on a few occasions. I share this because it helps to have one or more good professionals in place who truly understand the illnesses and the types of support that should be in place and requested and the politics involved. It’s greatly beneficial to research the policies and process thouroughly and check out what supports can be offered by your employer. There could be benefits and programs that are in place but hard to access. Good Luck!

July 22, 2011 at 7:29 pm
(68) LDM says:

I was diagnosed with Lyme, CFS and Fibro 5 years ago and tried to work. I lasted 7 months. I was making so many errors. Even double and triple checking everything I did was useless. Then I literally collapsed. I took a 3 week break with hopes that I would get better. That never happened I later found out that the owners of the Company thought I was on drugs during the last 7 months that I worked. No drugs just serious pain, severe nausea (lyme treatment) and awful brain fog. People that haven’t been around a chronically ill person do not understand. We all know that. I was the income provider for our family. It was very scary financially and still is. I am on disability. I do think I caused more damage to my body by trying to push through all of the pain. It is so important to put your health first. I didn’t do that!!

July 22, 2011 at 7:51 pm
(69) RebelRat says:

LDM: That was something else that happened to me at my previous FT job: The CEO, who had become a very good friend over the course of my employment prior to my FMS/MPS diagnosis, accused me of being a drug addict several times between the time of my diagnosis and my termination, which was absolutely shocking to me, especially considering that I was very honest about what medications my pain management doc had me on, and the CEO had even called me at home on one occasion when she pulled a muscle in her back and tried to get me to give her some of my painkillers. But all that aside, just the accusations and knowing there was so much talk behind my back was so hurtful — and stressful — to me, on top of all the *other* thing that were going on was definitely a challenge. But I, too, put up with it because I needed the job so badly. I’m wondering if any studies have been done on how much faster FMS progresses when we put ourselves under extreme stress?

July 22, 2011 at 8:03 pm
(70) Karen says:

I also watched my performance at work go down. I had been a top loan officer for several years. My days got so bad that I would go home for lunch and sleep for 1/2 hr just to make it through the rest of the day. Being in the mortgage business details and time are very important and can have legal ramifications. I was really slipping. If I got a phone call (majority of my work was over the phone) or someone walked up to my desk with a question, I totally forgot what I was doing or that I was doing anything at all!! We were recorded and once a month had a review with our manager. On one call he looked at me after I told someone we didn’t offer a particular product. He said…yes we do and gave me a strange look. I said…oh yeah, we do! I had done many loans with on that product!!! I knew it was only a matter of time before I would get fired so chose to quit and apply for disability. That was 3 yrs ago and the best move I could’ve made! I miss working and being around friends but there is no way I could possibly work the way I am now.
It’s a tough decision and I wish you luck!!!

July 23, 2011 at 2:33 am
(71) Maryhelen says:

yeah I’m there. I will be going this week sometime to talk to my supervisor about stepping away from my job. I was told I had to work seven years for them to give me disability so I decided this will be my last year of course that’s if God doesnt supernaturally heal me. Either or I will continue to go on living for each day and give thanks for everyone of them and those that have helped me face the days. I will help others with my prayers, and be there as much as I can and help them along the way. Who knows might be best thing I did….Take care of myself…. Maryhelen

July 23, 2011 at 6:13 am
(72) bethatply says:

Get some help with the paperwork. It took me months to get just a couple of the questions answered because of the emotional part of filing. Get an attorney and file asap … it could take years to get disability.

July 23, 2011 at 2:31 pm
(73) Jeff says:

I can barely hang in there at my job. During the earlier years of my chronic fatigue (about 13 years ago), I had a job that didn’t require a lot of brain stress, so I was able to manage. At that time, I would spend most of my vacation time doing juice fasts together with liver/kidney/bowel detoxes as per Richard Schulze’s protocols.

Detoxification plus exercise is what got me to where I can even function (though sub-optimally, to be sure) in the job I’m in now. However, I only took my current job because I thought it would be easier than my previous job based on what I was told about it. But I was quite misinformed. So it’s still very hard to function with anything like job satisfaction.

With continual detoxification, supplementation, modification of diet, attempts to keep a minimal exercise regimen, etc I don’t think I have sufficient symptoms or degrees of symptoms to get disability.

Yet, I’m still chronically fatigued to a debilitating degree. But I dare not stop what is helping me just to qualify for disability lest I get some kind of infection I can’t recover from or something like that.

In short, I feel doomed to live a long, tired life further frustrated by the fact that most people I have to interact with can’t even sympathize since they don’t understand these conditions or believe they’re real. If it weren’t for the latter, the former would be less depressing.

July 23, 2011 at 4:43 pm
(74) Jordan says:

If you can make any modifications in your home and work lifestyle, by all means do what you have to. I waited until I was too sick, missed a couple of days a month and was fired. It took years for me to back to a decent level of normalcy with the fatigue, weakness and the flared up numerous Fibro. symptoms. You need to survive and have an income but one day the choice may come through non voluntary means and you cannot manage everyday tasks. Good Luck, keep hope.

July 23, 2011 at 5:33 pm
(75) Deb says:

Some days, I would be driving home from work and I felt like my body was dying. Somewhere, I read that having CFS feels a lot like having cancer. When one keeps pushing and pushing, the body of a CFS sufferer cannot recover all the energy it has lost. Even though I do not teach anymore, if I do not pace myself, it may take weeks or months for me to feel well enough to do my normal activities.

July 24, 2011 at 6:54 pm
(76) Lynn says:

I am feelling the same struggles every day. It takes everything I have to get up and go to work. Sometimes, I think…should I decrease my hours or should I find another line of work? I have to keep working because there isn’t another option. Kids? Are you kidding? I wouldn’t know what to do if I had children. I would be so blessed by them but I believe they would get the raw end of the stick. I guess I am discouraged at this point. I am in my early forties and I cannot conceive what like will be like for me in twenty years. I already feel twenty years older. I admire you determination. I agree tht you should probably cut down your hours of work and apply for disability. I believe since you have been so blessed by having children your time should be mostly spent with them. Stay encouraged.

July 24, 2011 at 6:58 pm
(77) Karen Clynes says:

Hi, I hav suffered Fibromyalgia for 10 years, I had my initial start and luckily I found a fantastic rheumatologist, who helped. Last June 2010 I was struck down with it very severely again but this time with sjorgens, spondolistis, and bulging discs in my spine. I too thought I wouldn’t work every again. I returned again to the rheumatologist, who started me on more tablets, which he told me I wouldn’t feel any relief for 3-6 months. After 3 months he then prescribed even more medication. My employer was also very good at first, but as the months passed, then decided that I was ready to be wrote off. Fortunately you are covered by DDA – which means they have a duty of care to look after you, making reasonable adjustments.
If you consider even reducing your hours, it may not be for ever just while you are feeling so ill. It may be necessary for you to be able to carry on. I was off work for 8 months, I have now gone back to work, building up my hours and changing my working hours. You may also ne eligible for DLA, you won’t know until you try. Are you on any medication? It does help me, it may help you too. I hope this helps, take care

July 25, 2011 at 11:08 am
(78) lynette stone says:

I wouldn’t hesitate going on Disability but it takes so long to get approved.I would starve to death inside the box I would be living in while I am waiting!What do you do during the time you have to wait?This illness is destroying my life.Can’t get enough pain relief to work more than 2 or 3 days a week.

July 25, 2011 at 10:22 pm
(79) Pete says:

Many jobs have essential duties and duties that can be adjusted under ADA. Some employers are amazing at deciding that almost everything is essential. If you cannot do the essential functions there is no duty of care required. We work at their pleasure. ADA doesn’t apply to companies with under 50 employees.
The HRM offices are present for the benefit and protection of the company and not necessarily for the humans being managed.
SS disability payments depend on how many quarters a person works full-time and is paying into the system. Working under the table doesn’t count towards this. A TDY in my agency’s HR office taught me enough to be suspicious of “guarantees” under law.

July 26, 2011 at 1:16 am
(80) grace says:

I have had Fibro for 20yrs +. I am an RN. Workaholic till I crashed and burned. With wonderful GP that did everything he could to help me keep working. Eventually body said “no more” Very difficult to accept. We filed for disability and I was approved quickly. I cried because it made not being able to work so final. My husband on the other hand was so thankful. I believe it went smoothly because I (we) kept such good documentation. Anyway I have learned to take one day at a time. Do not remember what my life was like before the pain, fibro fog and other illnesses r/t FM. Good luck to all and may
God bless you ! primary med Lyrica and cymbalta. Was so excited when Savella was available but unfortunately caused Hypertensive Crisis. Hecky durn. Sure wanted to be able to work on wt gain. Oh well, never lose hope !

July 26, 2011 at 1:49 pm
(81) Guest says:

I am so glad to see this issue addressed and all the feedback here. Finding a way to bring money in when you’re sick just compounds the stress and anxiety we already experience.

I have CFS, fibro, unfixable hormonal inbalances, severe sleep disorder, anxiety, depression, cognitive difficulties stemming from early surgical menopause, just for starts. The cognitive isssues and fatigue are what keep me most from working. My background is 20 yr high tech, high stress jobs and thru the years I scrambled and tried everything medically while slowly falling apart. Like a wind up doll winding down thru out time, until 4 years ago was just incapable and incompacitated and had to leave my chosen career field. When you can’t remember your password you’ve had for years to log in the morning at your job, making so many mistakes, and not producing, eventually either you need to address leaving your job, or sooner or later your company will do it for you. I chose to leave before they kicked me out.

I filed two years ago and just recieved SSDI. Your ego and self worth does take a huge hit, but being on the streets would be worse. I can tell you that you really need to get a lawyer if you are rejected the first two times as I and many others are, and are heading to SSDI court. Most SSDI lawyers will work on contigency and by law they can only take up a certain percentage of your back pay settlement when you recieve it($6k max in my state) but it was worth it. I had 6 doctors reports (that’s only a fraction of the doctors I had seen thru the years), 6 inches of medical records. It’s not enough to cover current expenses but at least I know where my next meal is coming from.

continued..

July 26, 2011 at 1:49 pm
(82) Guest says:

Part II..
The one thing I might disagree on is, that besides my lawyer, several others told me that if you are still working when you file your chances of winning are greatly decreased, due to the fact as they will see you as still functioning. A catch 22 and a total crock if you ask me.

I have benefits for 2.5 years, not sure what will happen after that. A review will come up in 1.5 years and the whole process could start over again. The one thing that helped was the SSDI judge was known to be sympathetic with CFS cases and was very fair in court. I had the impression if we’d gotten another judge who didn’t think this was legitimate health issue, the outcome would have been diferrent. That’s a crock too.

If you do a search, THere are some videos online and on lawyers websites that tell you what to expect during the process that help.

Also when you get SSDI, you have a choice of who to tell you’re on it and who not. I know some people in my life would be completely negatively judgmental about it, I’ve told almost no one, just tell people you work part time or from home, etc, it’s really not their business anyways. It’s terrible that most people still think CFS is a made up term by “lazy people who just don’t want to work”.

Good luck to all, and ty Adrienne so muc for all your hard work here.

July 29, 2011 at 3:49 pm
(83) shastadaisy says:

I was diagnoised with FM nearlyl 15 years ago. I was married at the time and worked a full-time job. Each day I was getting more and more tired, to the point where I could hardly get out of bed. My then husband accused me of just wanting to quit work and stay home. I kept telling him that I was so tired and not sleeping well and I needed to find help to get me well. Long story short, he didn’t believe me, got a girlfriend, and walked out on me after 12 years of marriage. Thankfully we didn’t have any children. I’ve been single now for nearly 11 years. My job is my life. This is sad to say but it’s my only social outlet. Not only do I need it financially, but I need the interaction with people. On the weekend I find myself alone and not wanting to go anywhere due to the FM. I turned 62 this year and I pray that I will be able to work at least another 5 years, if not more. I’m afraid of what my life will become once I don’t have my job to go to everyday.

July 29, 2011 at 6:15 pm
(84) Cheryl says:

Hello to All:

I have read all of your posts, and want to thank each and everyone for sharing all of your experiences and knowlege.

I do have a little information for those of you who are struggling with the decision to file for disability.

I have come across a website: thefibromyalgiadigest.com. This has been a great resource, as I have signed up for a whole course on how to go about getting approved for disability and how to survive the wait. I have not started the lessons as of yet, because I have not decided what to do. This course is free right now, but may not be in the near future. I hope this will help everyone.

I will pray for us all and it is my hope that this post helps~

God Bless~Cheryl

July 29, 2011 at 9:39 pm
(85) Pete says:

I echo Cheryl. This is the first online forum to get help and answers I’ve ever been in.
Adrienne listed and gave great advice abt disability benefits. You are all my heroes. Thank you.

July 29, 2011 at 9:33 pm
(86) Pete says:

An update:
I made a mistake a week ago: I told a coworker about having fibro and asked him to keep it quiet. My job is now being reclassified downward based on current assigned duties. My work is now subject to a 3 tier review and all I am hearing from the directors’ office is “Are you sure about that?” All this in the space of 1 week. Gone from a policymaker and advisor to a senior clerk. And it is all legal. I keep my current pay but now at top of scale and now not eligible for any raises except COLA. Anger, frustration, depression, etc. As we say, I’m being ghosted. All of this came together today, 6 days after telling a friend.

October 28, 2011 at 9:46 pm
(87) Toni Bernhard says:

Hi Pete,

I’m not sure it’s legal — it may be — but an employer can’t make moved “in retaliation.” Maybe you should see if a disability attorney would let you run these events by him or her without charging a fee, just to let you know if the employer did, in fact, act legally.

July 30, 2011 at 6:37 am
(88) Rona says:

I tried several times to get approved for disability and was told that I could work.
So, these days I have a full time work at home job with much needed health benefits.
FMLA protects my job when I’m out due to my condition.
And last, I do make more money working then being on disability.

July 31, 2011 at 8:16 am
(89) Regina says:

I applied on my own several years ago and was denied. I applied because I had a work at home job that I couldnt do anymore. I was typing alot and my elbow tendon gave out. I had surgery and it didnt fix it. I figured since I was told I “could work” I’d switch my field. I became a nurse assistant. I developed thyroid cancer. I am in remission but between no energy from thyroid and bad fibro pain and arthritis in my back I cant keep up. More recently, I developed pain (fasciitis) in my feet from standing so many hours a day. I would come home exhausted and unable to care for my family. All I did was sleep the minute I got home. I had surgery for my fasciitis and it seems I traded one problem for another as I still have pain in the feet. I am at a crossroad as to try and file again with a lawyer or try to find yet another job that isnt physical or requires much repetitive movement like typing (got a dr’s order of NO TYPING) and lets me rest as I need. Its very stressful to make this decision.

August 6, 2011 at 7:15 pm
(90) Kathy D says:

I lost my job almost 3 months ago. I worked in a factory. I struggled so long with trying to hold onto my job, even though I was in so much pain I didn’t feel I could make it through each day. I am a single parent of 2 young children, so I honestly didn’t feel quitting was an option. I realized that I would work, ‘try’ to sleep (lol), then my time with my kids was spent in terrible pain, being horribly depressed & in all, just an unpleasant experience. My body didn’t have any time to heal in the few, VERY interupted hours I slept! I lost my job, due to excessive absences (fibro & severe migraines among other afflictions). I had to cash in my 401k to pay my van off & pay bills up a few months. I filed for Disability within the month. The fibro fog is debilitating. I can’t remember anything! I definitely understand the quicksand reference.

August 8, 2011 at 7:50 pm
(91) Pete says:

Thank you all. The synergism in this discussion is wonderful. Not only have I gotten answers to many of my unasked questions, but now I have better questions to ask the docs.
Thanks again!

October 28, 2011 at 9:24 pm
(92) Sharon Snell says:

I was diagnosed with fibro in the early 80′s. Docs tried me on several depression meds–some made me worse. Eventually, I decide to go natural and found St. Johns Wart worked. I take a lot of supplements and am able to function but must monitor my life. I’ve found an amino acid complex extremely helpful for brain fog. I also have osteoporosis, thyroid, adrenal problems and osteoarthritis.

Eating healthy is a must. Very little sugar. I am now allergic to wheat, eggs, and oats. I use fish oil and flaxseed meal . . . I am 70 yrs old.

I had to take an early retirement from an administrative secretarial position at a community college. I was able to eventually get on disability, but am now just on regular Soc Sec. I am a widow so am able to receive extra on mine to equal my husband’s.

Every day is a new one, and I am thankful to be a Christian and have access to Jesus’ peace and abundant love through His presence and His Word. I have had a lot of emotional healing because of this, which lends itself to physical wellbeing as well.

I did have to give in and take Clonazepam for sleep plus the amino acid L-Theanine.

Blessings to everyone . . .

June 26, 2012 at 3:29 pm
(93) TD says:

Rona – how did you ace a work at home job? I have tried before & turned out to be a bad deal. Please share!

Thankyou!

December 13, 2012 at 10:41 am
(94) Rebecca says:

My husband has CFS (Chronic Fatigue Syndrome)- we think. It’s hard to diagnose since so many symptoms mirror other issues. He spent 15 months in Iraq between 2004-2005, and has so many health problems now I can’t believe it. When we were married 5 years ago he seemed a healthy young man. Now he misses work several days in a row (per month) as he just cannot wake up. He can sleep for days and days and still be exhausted. Luckily he has a GS job with the government, so I think he’s got a little more chance at keeping his job, but it still worries us. We have a 2 year old and our 2nd child is due in less than 8 weeks, and he feels like he lets our family down, since he is sick so often. We’ve been to a sleep Dr, and are going again next week, but nobody seems to know what the problem is. To me, when I read the definition of CFS, it fits him perfectly. It’s just really sad that there are no treatments at this time; even getting it diagnosed is almost impossible. Just waiting on the VA to process him claim for Disability…

December 14, 2012 at 9:54 pm
(95) Pete says:

Rebecca,
First, as a Cost vet, thank you for both your and your husband’s service (your sacrifices need to be recognized, too).

This is a frightening time for you and your family and especially your husband. I also feel like I’ve let my family down. Fortunately, it has improved from daily to only once or twice a week. Unfortunately, the holidays really amp up these feelings, along with the physical limitations (I still don’t have the house decorations up).
I am learning, slowly, that things do get better. If I can help your husband by talking or emailing I would be happy to do so.

January 6, 2013 at 8:29 am
(96) Shannon says:

My mother and I were talking about this the other day. She was diagnosed with fibro 2 or 3 years ago and after describing many of the issues I have been having she feels I may have it as well. I was in a roll over accident roughly 7yrs ago and at first thought it was left over from my injuries. It proceeded to get worse through the years and after reading up more on CFS/Fibro they both seem to fit… The fibro especially. Do you have any recommendations as to how to discuss this with a doctor in a way they won’t just laugh me out of the office because of only being 27?

February 4, 2013 at 6:50 pm
(97) Fredda Shutes says:

I am 73 and have had fibro ever since I can remember, just didn’t know what it was. When I couldn’t do what other kids could do (like sleeping on a pallet on the floor at relatives) I thought I was just a sissy and this caused low self esteem. Work was difficult but like others who have posted, I pushed myself to the limits. My doctor suggested I go on disability years before I retired but I felt like I needed to have a reason to get up and do something or I would just become a recluse. Toward the end of my career I had fibro fog so bad that I would have to make notes to myself or I would forget something very important. I finally did retire just as soon as I became eligible and I do find myself doing as little as possible because I hurt so bad or I just can’t make myself go or do things that I would really like to do. The worst thing to me is that I always looked pretty healthy and I know a lot of people thought I was faking it. One teacher I had in school was always getting on to me because I could not stand for very long and she would tell me I was just lazy if I asked if I could sit down. When I was going to doctor after doctor to find out what was wrong, I had one doctor tell me I just had a lot of anger built up in me and it was coming out in the form of pain! Finally, in 1981 I got a diagnosis at Ochsner Clinic in New Orleans, only then they called it fibrocitis. I was put on a medication that helped so much I couldn’t believe it. But, I still hurt., just not as bad I recently started going to warm water pool exercises and that does help some.
when anyone tells me they have fibro I sure know how to sympathize with them. I also have CFS and I believe most people with fibro have this also. They seem to go together like “peas and carrots” as Forrest Gump would say. I hope someday doctors and researchers will find out just what causes this and come up with a cure or at least a medication that will make it more bearable.

February 26, 2013 at 7:55 pm
(98) John C. Finley says:

I am 72 yo and was diagnosed with Fibromyalgia some 28 years ago. I had open heart surgery a year ago and started doing rehab shortly after. That worked for a short while and was doing good. Then I started having extreme weakness the following day, so much so that I quit. I recently started aquaerobics and made it through a one hour session, I felt tired but good. Today however, I am dragging myself to sit up. I have had a meal, but no energy.
I see what others have written, and it makes me feel not so much out on a limb by myself. I have had more tests and my GP, Neurologist and Heart Doctor have no solutions. I am on Savella, Lyrica, and a number of other drugs to hold off diabetes (border line).

April 22, 2013 at 6:07 am
(99) Valma says:

I have Chronic Fatigue Syndrome and was a Registered Nurse until CFS hit me. I am now a Teachers Aide- the shorter days and regular holidays help a lot.

April 22, 2013 at 9:32 am
(100) Karen says:

I wish I could have a job that lets me take as much asneeded to do it with how I feel that given day.

May 3, 2013 at 5:27 pm
(101) Mobbi says:

Does anyone know if a company disability policy through my employment will still pay out if I’m over 65 years old? Have been working for the same company for nearly 20 years and paying for this insurance, and have RA, lupus, and Fibromialgia.

July 5, 2013 at 4:58 am
(102) ioption says:

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October 8, 2013 at 12:53 am
(103) Suzanna says:

The basin is advised to be the bare minimum catfish gear needed to fishing rod lamp fish from though they are not playing.
Even if you got taught all this you’re not going to
have a chance to fish the fishing rod lamp lower end.
They would take a bite and that’s because of the
coloration. Suwannee is also to be found everywhere.

October 8, 2013 at 2:11 am
(104) http://www.lounges.ch says:

You know, I get often asked, why do they call you
the Big Show come in there cause he was tired of trying to lure fish with a
Tremendous fight! Bassmaster Elite Series and Bass Pro Shops PAA Tournament fly fishing rod 8 weight Series.
Don’t play a fish any longer than necessary.
I think he’s still looking for Tarpon.

October 11, 2013 at 6:32 pm
(105) Pete says:

Mobi;
It depends on the terms of the policy. It may affect Social Security Disability. With SSA retirement, it shouldn’t. Go to HR, talk with the Benefits Coordinator (or equivalent), and review the policy. You might also want to talk with with a tax adviser. If it is a standard 30 year plan you might only get a prorated amount. For example, if you worked 20 years on a 30 year retirement, you might only get 2/3 of the amount. Talk with HR first then call Social Security Administration office.

October 31, 2013 at 12:56 pm
(106) bluejay34 says:

There is a website for fighters. Not so good for the people that just want to go on disability, they probably won’t like it. http://www.mystery-illness.com

February 12, 2014 at 2:20 am
(107) 2.Gp says:

This permits fishing in ocean city md for clear mixing with the different varieties that are
expendable to you. The reel of this product has all metal gears as well as taxidermy in
some cases publicity.

February 22, 2014 at 2:55 am
(108) gauge says:

i fell 40 feet landed on my head only had to peel my face off to fix my head.i miss working every day.the looks i get from my wife and kids is a enough to kill a person.i wish every day that i would of died that night.i get the pain thing daily 24@7@365 to.i have the pain med’s to. its the answers i get when i go looking for reason why it hasn’t let up.answer do you know how lucky you are.my answer to that do you know how useless i feel no but do you know how lucky you are,where do you go when no one believes you about anything.many times i thought the only answer was my hunting rifle.then i think do i want to go to hell . that’s what’s stops me is that suicide is a sin.but you are still by yourself

February 22, 2014 at 3:07 am
(109) gauge says:

where is my post

March 29, 2014 at 7:07 pm
(110) vanboy says:

Cockburn and Vidal die within 10 days of one an additional. Chomsky need to see a doctor immediately.

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