how does anyone hold down a job with this condition?

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mara24
New Member


Date Joined Nov 2017
Total Posts : 2
   Posted 11/14/2017 3:31 PM (GMT -7)   
I already was extremely tired since I was diagnosed with hypersomnia. so the whole me being extremely tired thing isn't new to me. and for about 5 years now or more I've experienced pain but I thought everyone has body pain, right? I was diagnosed with this last year around this time my pain has seem to have gotten worse. I know longer can wear bras it hurts too much in my back. its hard to believe that this is what I have. I don't know what to do. I feel hopeless and im in constant pain and can barely think... how does one survive ?? shakehead

Post Edited (mara24) : 11/14/2017 7:03:41 PM (GMT-7)


Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2660
   Posted 11/15/2017 3:11 PM (GMT -7)   
Hi mara24: There have been a few discussions here about fibro and jobs. Here's one of them:

/www.healingwell.com/community/default.aspx?f=24&m=2384675

I put 'fibromyalgia job' in the search box and several threads are there; some oldies, but maybe they'll be helpful. I know this subject comes up occasionally. Some have gone on disability--it may be something to run by your doctor if you need help with that.

Hope you're feeling a bit better. Thinking of you. Take care and best wishes.
"Pray, hope, and don't worry."

St. Padre Pio

kattrex
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/30/2017 7:56 AM (GMT -7)   
Are you on any fibro meds like Lyrica, Cymbalta,Effexor, or any pain meds like oxy for pain control? I have had this syndrome for 20 years and have found some relief with Effexor. Every 5-7 years they have to up the dosage though. I have to force myself out of bed every day and if I dont get a solid 10 hours Im a mess! Some days are better than others and somehow we learn to cope. I used to have a very active job in retail management for 30 years and now I changed to working as an optican at an eyeglass shop where I can sit for part of the day and my 2nd job is recruiting on the phone for marketing company. My brain gets very foggy but Ive upped my B12 D3 and CAL/MAG. THose help, Best wishes on your journey

ncstebb
New Member


Date Joined Dec 2017
Total Posts : 3
   Posted 12/2/2017 9:06 PM (GMT -7)   
Hi mara24. I've had chronic pain since I was about 10, subsequently diagnosed as fibromyalgia, I'm now over 40 and I've learned to live with it. I think the toughest thing about it is that nobody can really understand what you are going through. I rarely talk about it with anyone and my employers don't know. I don't keep it a secret, it's just that it rarely comes up and there is really nothing to gain by telling them. They can do little to help and sympathy is of no benefit in the long term, you need to find strength and I find sympathy doesn't help me in this. Even other sufferers can't help too much (although until today I've never really reached out to any), because different people have different experiences of the condition.

I've survived by focussing on the things that help me, mostly having people around me that care for me and that I care for. In my work I value employers that appreciate what I contribute and are OK with the fact that I'm not perfect, I can get behind in my work, I get tired and struggle with physical tasks, I can be forgetful and absent minded, but I make up for it... I'm always on the lookout for ways to be helpful and I communicate with my boss a lot on this level. Perhaps you can talk to your boss about it... your performance may be lacking in some ways, but I'm sure you can find other ways to make up for it.

I've developed strategies to help me concentrate and keep a track of things despite the pain. Sometimes I come across workmates or employers that want to focus on negatives that I feel that I have little control over. I don't pay any mind to these and if necessary I will move on to a more compassionate workplace.

It was very hard for me when I was younger and trying to find my place in the world. I think it would also be hard to develop the condition later in life and wonder how to live with it. I'm hoping that it helps a bit to know that it's possible to do and you can even be happy and fulfilled along the way.

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 43
   Posted 12/7/2017 4:42 AM (GMT -7)   
What is your situation mara24?
Do you work outside the home?
Do you have a doctor that is helpful?
Are you getting the help you need as far a pain management and good sleep?

I find that if I am I so much pain that my body can’t relax and sleep well I end up in a downward spiral of pain, exhaustion and then it’s easy for my mood to darken.
When the mood darkens it is very hard to think period.

I was where you are a few months ago, actually for the entire summer.
I was told I had fibro long ago but never really experienced more than sore shoulders.
It was when I had to move this summer that the real fibro hit me.

I didn’t understand what was happening to me.
Fibro was never really explained, I guess it didn’t need to be until it got real bad.
That’s when I found this site.
But first I just gathered my strength and got good and mad.
I marched myself down to the emergency and demanded some pain relief so I could sleep.
It was a bit of an ordeal, as the doctor didn’t know me from Adam and I was asking for str9ng pain meds.
But soon she began to understand my story, did some blood work which showed allot if inflammation from the lupus which is probably what triggered the fibro.

I was given IV anti-inflammitories and morphine in a small dose.
The doctor could literally see my pain, anger, struggle really melt away.
I slept, finally.
I was so thankful someone understood, and I was sent home with a couple more tablets that I was told to cut in half. Which I did twice. I am happy to say I did not need them after that.
Strong pain meds long term is NOT the answer.

Then I saw my GP who gave me anti inflamitories and my rheumatologist added Baclofen a muscle relaxer that helped me sleep. After just a few days maybe five max, I was myself again.
A little drowsy as the baclofen can make you dopey, which I didn’t like, but I knew for a little bit I needed them.
I ended up stopping these meds and going to extra strength Tylenol after about five days.
Then I made myself get up and move.
If you are laying in bed or on the couch it may feel like it’s where you feel most comfortable but is really detrimental after a while.

Muscles that atrophy make it very easy to hurt yourself when you do try to do anything.
I had been on high dose prednisone and chemo last year because of lupus and that is how I got where
I am now.
High dose prednisone decondtions muscles. So when I moved, with all the pa king and lifting I ended up
InflMming my spine from top to bottom...then the fibro started after that.

So mara24 I see through your posts that you are in a terrible place. I have been there.
You can get out, but not by doing nothing.
It is a slow steady determination and it may have to start at the Emergency Room if you don’t have appropriate healthcare with your doctor.

Don’t wait anymore mara24, life is good, demand better care and take it back.
Your life is not over unless you want it to be and that is NOT the answer.
We all know and care where you are and we want you much better.
Hope this helps, Tuffymason
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