Living With Fibromyalgia - Online Support Group

How would you deal with this?

I’m going to pose a question here that I have been struggling with for a while now.

Is it better to take a job, so that you have an income, even if you are pretty sure you are not going to be able to handle the job physically, mentally, etc. Knowing that you will be calling in sick often because of flare ups, fatigue, etc. and that you most likely will end up having to quit because of your health issues?

I have been receiving some subtle, and not so subtle, comments from friends and family that I need to not be so “picky”, “lazy”, “whiny”, (you can insert whatever word you want, I’ve probably heard it :frowning: ) and just get a job so I have an income. I realize I need an income - but the income is going to do me no good, if I don’t survive earning it!

I know they mean well, they are concerned and I understand that . . . but it is so frustrating . . . they see me in town, at church, a fellowship meal, etc. and maybe they notice I’m hurting “a bit” or I’m “a little tired” but they don’t understand just what such outings cost. They don’t know what I have done, or NOT done, so I can be there. They don’t see me when I get home. They don’t see me struggling to get out of the car and inside BEFORE I collapse. They don’t see me struggling with the flare up in pain that now has me in tears. They don’t see me battling with fatigue that has me praying I get home BEFORE I can’t stay awake anymore. They don’t see me struggling with the simplest of tasks because I don’t have the mental energy left to focus on one more thing.

I have now spent over an hour typing, correcting, deleting, etc. and I’m still not sure any of this is making any sense!


How do you support yourself now? Do you have both FM and CFS? I wonder if you really really went deeply into the thyroid connection. So so many docs miss supporting our thyroids due to saying “your numbers are fine”…I was dealing with that mantra for 10 terrible years.

Jamin -

I don’t have an official diagnosis except for “severe arthritis” - the only testing he did to reach that was for RA, which came back negative. And while arthritis might be part of it, it is not what I would class as severe. I watched my grandpa struggle the last few years of his life with arthritis in his knees, I’ve seen my grandma’s fingers and toes twist and deform over the last few years - if I have arthritis, it is not severe. Arthritis also doesn’t explain why most of my pain is muscle, not joint, it doesn’t explain my fatigue, the concentration/memory/focus issues and all the rest. We are still arguing over the issue, but for now my doctor wins as I don’t have any extra funds to push for more. As for the thyroid being a problem - I’ve had a variety of tests done over the years and have been told repeatedly that’s not my problem. Now whether it was the right tests or not, I don’t know.

And as for how I am supporting myself now - I am getting by on a small amount of savings (which is fast running out). I am hoping to start selling some decorative signs and arrangements that I have been making, doing some resell and such . . . I’m also doing some checking into work at home jobs, but finding most such listings to be suspect.

Thanks for your note. I don’t believe there is an “official” FM disease. It’s a lot of stuff gone wrong in our bodies and docs don’t know what to do so gave us this name and now a label to push more drugs.

I have a brochure from the Arthritis Foundation that years back before the label of Fibro this was called rheumatism the older folks always talked about their rheumatism and arthritis issues…especially all the women in my family.

Dr. St Amand gave me the label when I went to him for thyroid help, he’s an endocronologist turned FM specialist and pushes his guiafensen protocol, which I did not buy into. I don’t care for him.

When I finally got on desiccated thyroid support it was by my D.O. who did NO labs but knew as he was old school…the support helped me in 4 days. After living with 10 yrs of depression and many docs and their numbers.

My major issue NOW is living with many complications from hip replacement in 2010, talk about regrets. I’d be doing good if I had NOT done it I believe.

I believe the HGH homeopathic gel helps all if they stick with it, and depends how much damage one lives with and their age…I’m headed to 82 this year. j

Sadly, this is one of the fun things we get to deal with when having chronic pain. My family still says and does “stupid” things that they don’t even realize they are doing. I have hardly any friends that I spend time with because I can’t deal with their drama (and life is drama) but my one friend who has stuck around is really an energy suck for me. She had injured herself this past spring and the pain lingered for months. She explained how difficult it is to deal with life when she’s in so much pain every day. I tried to tell her that this is what I deal with daily, every day, for years now~ and she still doesn’t quite get it. I’m dealing with an elbow “injury” which feels like tennis elbow to me (diagnosed years ago) and it just won’t go away. Some days lately I can barely lift my arm- and yes, it’s my dominant arm/hand. My friend says we should go bowling and I said that bowling is not on the immediate horizon for me due to the elbow pain. What does she say? She says, let’s go anyway and you can bowl with your other hand… that way I can beat you. I shared that story with my daughter and granddaughter… kind of chuckling about it because I don’t want to be so negative. My granddaughter wasted no time saying, “How rude!” (she’s 10)
Anyway, this long comment is just to share that it could be a lifelong struggle with getting others to understand the pain and how exhausting it can be. Please, please advocate for yourself! You’re totally worth it. The diagnosis won’t change anything and you will meet folks along the way who want to belittle you and tell you you’re not really hurting. Resist the urge to punch them in the face as you would probably injure yourself doing so- LoL. Don’t waste your energy trying to explain to people who aren’t hearing you.
As for the job- I’d say to take it and see how it goes. If it doesn’t work for you, move on. Don’t feel badly for the employer. Don’t feel guilty for what you can’t do. Do what you can and perhaps they will see value in what you’re able to do.
Don’t worry about giving everyone else the benefit of the doubt when you aren’t receiving the same in return. You should always be your own top priority- and don’t let the jerks get to you!

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I don’t know how to help, but I can at least offer that you are not alone. I’ve been trying to figure out what I can do to get back to working and being able to support myself. I’ve been out of work for a few months now and between fighting with my doctor and telling my insurance company that I can’t stand, I’m trying to figure out how to get back to work or at least, how I can support myself in the future.

My doctor thinks I’m fine and approves me to go back to work without even discussing it with me, so at the moment, I’m actually using my insurance company’s team of medical advisors to collect all the information regarding my current situation (because I can’t get anything out of my doctor or the hospital she’s a part of).

I’ve been told trying and failing is better than never trying at all. So, even though I’m one of the few people who even believe in Fibromyalgia in my life, I’m going to keep trying to figure out what to do, even if I keep hitting dead ends.

I haven’t been posting much lately but thought I would give a bit of an update, though it is more of an “I am still alive” than anything else.

Really not much has changed. I keep trying to get some sort of income coming in and feel like I am striking out with all of it. But, I keep trying. It has gotten a lot harder now with all the closings and such. No one around here is hiring anybody - they are all laying off those they do have. :pensive: And I know even once they get the all clear and start hiring again, I will be the last one they consider.

I ended up not getting the job that had been the original prompting for my post. They were looking for a “guarantee” that I would be there each day I was to work - I couldn’t be calling in sick - they didn’t want to have to deal with an employee calling in sick “a lot.”. Since I couldn’t give them that kind of guarantee, I didn’t get the job. Not really sad about that though - after talking with them more I had already decided that the work atmosphere would probably have been more stressful (even hostile?) than I could handle.

I still have about 4 months to get some money saved back so I can see my doctor again - that is when I have to see him if I want to get my pain med prescription refilled. At this point it doesn’t look promising to be able to do that. I started rationing my pain meds a couple weeks ago to try and stretch how long they last. Probably not the smartest thing I have ever done but I don’t have much choice right now. Not sure they are really doing anything anyway - I haven’t seen any improvement really since I started taking them. My mom keeps telling me that I just need to give it more time - it takes a while for those things to really take effect and for you to get the full benefit. I realize it can take a bit, but I think 6 months is more than enough time. :roll_eyes:

Anyway, thank you again for all the wonderful support! I hope you all stay safe.