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13 surgeries and counting...
5 Replies
Ken66 - July 2

Hello everyone - I am one of the 10% of FMS sufferers that is male. I am 44 yrs old and just recently diagnosed. I have never been able to sleep more than 4 - 5 hrs a night. I've had irritable bowel syndrome for over 25 yrs. Over the last 10 yrs I've had 13 surgeries on my feet, ankles, knees, elbows, hips and back. I've also been on Cymbalta since 3/07 (limited success - very positive impact for the first 6 months or so then a gradual decline in effectiveness regardless of dosage). I've been on a drug protocol that included neurotin, Cymbalta, Lyrica, Fenatyl, Vicodin and a narcotic-side-effect suppressor. No success. There are days when I can not get out of bed due to severe pain and fatigue.

I have a very A+++ personality and am a stress junkie - I love high intensity work. I work for a Dow 30 company and am responsible for managing over $6B in tax liabilities. I've spent the last 16 yrs building my career and professional reputation (I publish and speak constantly at professional technical forums). My Dr has now told me that, due to my non-responsiveness to the drug protocol, my next step is to reduce my workload or switch careers. I initiated a discussion with HR and the response was very cold - the company is not interested in entertaining my request for reduction in scope of responsibilities and would consider such a request to trigger possible firing procedures.

Is there anyone out there that has the same type of personality/love of job (and major stress contributor) that has been able to find a balance and keep their job? Intellectually, the decision is easy (the job is killing me) but the emotional satisfaction of what I do is keeping me from pulling the trigger on pursuing a lifestyle change.

Add to the stress mix is that my wife is disabled (will lose her sight completely) and I am the breadwinner (and more important the source of insurance). Not sure I can afford to reduce my salary in half.


Noca - July 2

I am also male with fibromyalgia and am on many drugs. I've also had IBS for about 20 years so far. I am currently on disability and am in college studying psychology. I plan to one day work again. There are those of us here on this forum who work full-time jobs and manage somehow, maybe they can help you better than I can.

You didn't mention any sleep aids for your sleep problems, why are you not on any? Sleep is one of the most important aspects of treating FMS.


Stacey373 - July 2

Hi Ken66!

I think I can somewhat relate...many years ago I was the On-site office manager for a major construction company (not house construction, but hi-tech facilities like Intel and HP) I was in charge of several multi-million dollar contracts doing everything from assistant to the Project managers down to the payroll of over 500 employees. It was an extremely high stress job and everything that came across my desk needed to be done yesterday. I was a single mom working 60+ hours a week just so I could support my son, but I also absolutely loved my job!

In one year I started coming down with symptoms of FMS, got pregnant, and then got married. I ended up quitting my job because those 2 things (FMS & being pregnant) was just too much for me to deal with and try to work in that type of job. (I really thought once I had the baby I could go back to work) Not knowing what was going on with my body, I progressively got worse each year and before I knew it 10 years had gone by and I finally realized there was no way I would ever be able to go back to that kind of work again. I actually have had a couple of jobs in the last 2 or 3 years...but they never compared to my "high stress construction" job and between being completely un-satisfied and the FMS I quit both within a couple of months after starting.

I actually got lucky to have a husband who is the "bread winner" and he has always made sure that I never had to work if I didn't want to (or couldn't). And I also know how hard it is to be dealing with all of this without any insurance. My husband has been laid-off for over a year now and we lost our insurance back in January. I am literally spending several hundred dollars each month for my doctor visits and medications for myself, plus I have 2 girls that have ADHD and their meds cost a small fortune every month too.

I really don't have any advice for are definately stuck in a "hard place". Even if you didn't love your job, keeping your insurance is a major reason to not quit. I wish you the best and hope you can figure this all out. Your health should always be the #1 priority, but I understand sometimes the job comes first.

Take care of yourself, Stacey :o)


Ken66 - July 5

Noca and Stacey373 - thanks for the responses. I have tried various sleep aids including Lunesta. Again, somewhat effective at first but then slowly tapering off and having little if any impact. My dr's (at the pain mgmt clinic) do not want me on sleep aids given the amount of narcotics and Cymbalta - they do not believe that I can't sleep.

I'm walking a very fine line at work. In order for the pain to be eliminated enough for me to actually go to work, my thought process is adversely impacted. Please understand that my job is to find "holes" in the tax laws to minimize above the line costs. Essentially I am the technical "geek" and am considered to be the in-house counsel for the taxes I deal in. I've had to disclose my condition and that I am on several narcotics to my reporting line. If I miss an issue or am wrong in the position I take, the impact is anywhere from 7 - 10 figures. Because of my condition, my company is now incurring additional professional fees from various law firms (that charge upwards of $1,000/hr) to review my work. Needless to say I don't think my prospects for remaining employed are high.

Has anyone one the list been able to secure disability (either short-term or permanent) based on FMS alone? My understanding is that FMS in and of itself is not generally acepted as a disabiling condition. That said, my dr has diagnosed me with repetitive motion arthritis. While that sound encouraging, the reality is that I have been using voice-recognition software over the last 4 years when my arms and hands were impacted. I would love to continue working (I can manage the change from typing to voice) but the pain-killers bring a whole new paradigm to the forefront. I really cannot work at the technical level needed because of the mental fog.


Stacey373 - July 5

Hi Ken66! I understand how you are feeling with the "mental fog". I tried going back to school to get my business degree and I quickly realized I just couldn't retain all the information with the medications I am on. I can't imagine having the responsibility of your job. I hope you understand that it's not your HAVE to take the meds to be able to matter what the side effects are. I dealt with some major self esteem issues when I quit school...I'm not a stupid person, but the meds sure made me feel that way at times. I hope eventually I will be able to go back to school part-time and learn better ways to retain everything and do as well as I know I can.

Anyways, my friend's mom is on 100% permanent disability for FMS. She said that it took many years to finally get it, but at that time FMS was not a well known illness so it wasn't easy to prove and win her case. But she did finally get it and it's only for the fibromyalgia, nothing else.

The last time I saw my doctor (about 2 weeks ago) she talked to me about trying to get some sort of disability. With my husband not working and us not having any insurance, she knows how financially difficult this has all become for us and how we are quickly going through our savings. She told me to go to the Welfare office and to apply for temporary help. she said it is a form of, or at least 1 step closer, to actually getting permanent disability. and that all I would need is a letter from my doctor stating that I cannot work because of FMS.

I honestly haven't wanted to attempt any of this because I didn't want to deal with "fighting" for disability, and without insurance, I just don't have the money to "prove" I have a medical condition that keeps me from working. I assume it would cost a lot of money to have tests done, see specialists, etc.

But my husband and I talked and he wants me to start the process of trying to get permanent disability. So it looks like I will be starting all of this in the next week or so. I'll let you know how it goes and hopefully the information will be helpful for you too.

Take Care of yourself, Stacey :o)

Oh! By the way, If your doctor won't give you any sleep meds...maybe try taking OTC sleeping pills. I know they don't usually work on "us", but it's worth a try! Right now I'm taking 2 OTC sleeping pills and 2 muscle relaxers (20mg flexeril) and sometimes I also take a shot of Nyquil cough (the couch formula doesn't have tylenol in it). they don't work every night, but for the most part it's better than nothing.


Noca - July 5

Possibly ask your doctor about some stimulant medications like Wellbutrin or Ritalin to help with the cognition. Or better yet you could try OTC Piracetam (Nootropil). It is an OTC supplement that increases cognitive functions including thought processing and memory. Talk to your doctor about those options and tell the doctor how your narcotic pain relievers are affecting the quality of your life and your ability to do your work.



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