Old 06-25-2017, 02:54 PM #1 (permalink)
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Default Newly-diagnosed & trying to adjust...

Hi everyone,

I was just diagnosed on 6/16/17 after having symptoms for at least several years. While it was good to finally find out what is wrong, it's also turned my life upside down a bit. I had been "dealing" with my health issues by using all of my energy to get to work during the week, then crashing on the weekends to prepare for the upcoming week. After a failed trip out of the country for a job interview (long story...), I felt like I crashed physically and have not been able to rebound in the two weeks since I returned home.

The rheumatologist I saw on 6/16/17 started me on tizanidine at night to help with the pain and sleep. And he prescribed Savella to address the fatigue (still titrating up on that). I hurt whether I'm sitting, standing or lying down plus I still feel exhausted.

At this point, I wonder about my ability to continue to work full-time. My new plan is to work until I'm 62 (15 months from now) and then retire despite the fact that I will receive a lot less Social Security.

How do others manage working full-time? Any tips or suggestions?

Thanks so much!
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Old 06-25-2017, 03:29 PM #2 (permalink)
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Default Re: Newly-diagnosed & trying to adjust...

First of all, welcome to the forum. We are a very friendly bunch here, with many different stories to tell and share, so I am sure you will feel very at home and at ease here.

I don't have the answer to your question - sadly I had to quit my full-time job in 2014. Then for almost 3 years, I worked from home, about 20-25 hours a week. Now for the past 8 months, I can't work at all. My situation is not 'only' fibromyalgia though. At my last job, I had a traumatic experience, and I haven't been able to shake it off ever since. I still feel like I could never work in an office environment or with any humans really. This saddens me a lot because not only was I working at a high level, prestigious job, at the top the career ladder, but I also genuinely miss working (not only the security/money/insurance etc.).

Even if you 'only' have 15 months till you retire, make sure you listen real well to your body and learn to accept your new limits. Maybe start taking things slowly. Take lots of breaks, even if your body is not aching.It will start ache if you go on and then it will be often too late to stop the pain. I also take tizanidine for sleep, it really helps me, so make sure you have a good night's sleep as well. Not only by taking medication, but also by trying out relaxation methods, light stretching moves etc.

Accept that the weekends are for relaxation. So take things slowly, say no to people if you really need to rest/stay inside. Do things you enjoy whenever you can, because it is so so so important to keep a healthy mind.
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Old 06-25-2017, 03:51 PM #3 (permalink)
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Default Re: Newly-diagnosed & trying to adjust...

Thanks so much Vicky. I keep thinking that if I can just hang in there until I can retire, then at least I'll have more flexibility in life. By Thursday, I'm totally exhausted and of course, the more tired I am, the less well my brain in functioning. My job is not very physical but relies almost completely upon my brain. I've thought about trying to do something from home but would lose my health benefits. So, I may try to put something together at 62 that will give me a bit extra income.

I'm definitely isolated at this point but I'm honestly OK with that. Evenings and weekends are spent resting, relaxing and hanging out with my two Corgis. I think I was most shocked when I realized that my body just won't let me do something like relocate and start a new, stressful job. Coming to terms with that has been the most difficult. That part of my life is over so I'm trying to focus on each day and enjoying the small things.

Thank goodness I found this forum!
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Old 06-25-2017, 04:54 PM #4 (permalink)
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Default Re: Newly-diagnosed & trying to adjust...

Hi Corgisrule,

Welcome to the forum.Im sorry that u were diagnosed with Fibromyalgia.Its hard to admit that our bodies just can't function like they used to.That was the hardest part for me.I enjoyed working also,but my body just didn't listen to my mind.
Your health is so much more important .If you push too hard you might make it worse for yourself.

It sounds like you know the answer but you don't want to do it yet.See how the medication and rest help you,and if you don't see any improvement then you can decide.Dont over stress your body at all and take vitamins and good nutrition.

Write back to us and let us know how your'e doing.A lot of us had to retire early.But that doesn't mean it's forever.Social security does have a trial work program , I think for 9 months to try work again and still receive your social security while you try to go back.I was glad they created it.

Feel better


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Old 06-25-2017, 07:11 PM #5 (permalink)
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Default Re: Newly-diagnosed & trying to adjust...

Hi Sagey,

Thank you for your support! Fibromyalgia is such a complex disorder, isn't it? There are physical, emotional and psychological aspects so it affects every facet of a person's life. Although I knew there was something wrong with me since I developed Meziere's in 2012, it was the post-exertional malaise I experienced in May after trying to work out that threw me for a loop. I felt like I was run over by a truck.

I'm definitely focusing on reducing stress and pacing myself. It's been great to read posts by so many others who are experiencing fibromyalgia.
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Old 06-26-2017, 10:53 AM #6 (permalink)
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Default Re: Newly-diagnosed & trying to adjust...

Hi Corgi,

Yes, I like reading what others are experiencing.It just helps when others can understand what we are feeling.Everyone post treatments that help them and it can help you.

By the way Corgis are really cute, with there little legs.I love dogs! My son just called me the other day and said his wife was thinking about getting a Corgi.
He's still looking and hasn't decided.They are good companions.My dog was with me every night when I first got sick.They give us love and comfort.


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Old 06-26-2017, 10:00 PM #7 (permalink)
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Default Re: Newly-diagnosed & trying to adjust...

Welcome Corgi, like vickicat I don't really know the answer either. I would be homeless and starving if not for my husband! It took. So long to get a diagnosis I don't qualify for disability. I'm sorry I don't have any good answer for that.
The good news is you now you know what's wrong, the bad news is it fibromyalgia but then T more good news is you now know what treatments to try so relief might be right around the corner. Your doctor will try different treatments until you find one that helps. And we can all testify different treatments help different people. Soooo many things you can try on your own that can be very affective. I know it takes time to find relief with many meds so try to hold onto the hooe for the day you wake up and realize your pain has diminished some.
Again welcome!
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Old 06-27-2017, 11:20 AM #8 (permalink)
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Default Re: Newly-diagnosed & trying to adjust...

Hi CorgisRule, and welcome. I can relate to much of what you are saying. For one thing, I also love dogs intensely, and in fact if it were not for my dogs I doubt I would still be here at all. Corgis are good dogs. I have known a few who were very smart and very capable.

As for working and retiring, that is always a debate. But one thing that helped me was when a financial adviser told me that the real issue is two fold. First, do you absolutely have to have the money at age 62.5? If so, apply for it and take it. If you don't absolutely have to have it, then the question is how long do you think you will live?

He said the "break even" point for the vast majority of people collecting SSI, no matter when you start to collect it or how large or small your payments are, is age 80. Meaning, if you die before or at 80 you will only be getting out of SSI what you were forced to put in to it over the years. If you live longer than that, you will come out ahead.

So, if you have reason to believe, due to genes or health or whatever, that you won't live much past 80 anyway then collecting it early and getting smaller payments doesn't really make any difference. So, my suggestion is don't worry about collecting it at 62.5 unless you think you are going to live a very long time, and be entirely dependent on those payments.
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Old 06-28-2017, 07:10 PM #9 (permalink)
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Default Re: Newly-diagnosed & trying to adjust...

That's good information about Social Security! I had to stay home today because I felt like I hit a wall and just couldn't drag myself into work. When I have days like this, I question whether I can even make it 15 months. My plan is to see how the medications help and play it by ear.

I love Corgis and have had them since 1996. My current two, I've had for less than a year and got them both as adults. They are such good company. They never judge and just want to be loved.
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