Fibromyalgia in your 20s

[FjordBCRF]

@paintedpennypony

I’m so tired all the time and struggle with daily aches/pains. It zaps my motivation to do anything which sucks… I have two lovely horses and I’ve barely touched them in a month (granted we’ve been under a heat advisory, but still…). My garden is being neglected. There’s so much to do all the time on our little farmette and I can barely drag myself through feeding the animals.

I have Ehlers Danlos (lifelong), some autoimmune diseases, and disc Degeneration disease in my neck that were diagnosed in the last 5ish years. Currently on Plaquinel for all the autoimmune stuff and PT for my neck. Chronic fatigue and aches/pains are things I started dealing with in high school or so (early 40’s now).

Things that have helped me over the years (and I have tried many things).

• Eat real food. Stay away from ultra-processed anything, and avoid added sugars as much as possible.
• Make sure you are getting enough protein.
• If you haven’t, remove wheat/gluten from your diet for a month and see if you feel any differently. I do not have celiac, but I do have a sensitivity. If I get “glutened”, for me it shows up in terms of brain fog and fatigue.
• Check your sleep hygiene. Are your go-to-bed and wake-up times consistent? Are you getting sunlight early in the morning after you get up? Do you have a wind down routine in the evenings…dimming lights, adjusting screen settings?
• I supplement year round with Vitamin D, but getting in the actual sun makes a much bigger difference in my energy and alertness.
• Stay far away from alcohol
• Focus more on recovery type exercises; yoga, stretching, foam rolling, walking.
• See a PT for the daily aches and pains. Once your posture starts to suffer, it can make everything else in your body worse.

@paintedpennypony

Do you find that exercise helps the pain?

For me, yes and no, but mostly yes. Over the years, I have gotten really in tune with my body and how it feels. Most days, my pain is helped with exercise. I am pretty active; I shoot for 2 days a week of lifting, 20 mins in HR zones 4-5 (usually get there by jogging or spin bike), and I shoot for 3 yoga sessions. That is on top of daily barn chores, riding, and driving in addition to hiking/kayaking/biking with DH on weekends. There are days though when something feels off enough that I know not to push through.

One last thing that has really helped me, was I gave the 30 Day free trial with the WHOOP fitness monitor in June: https://www.whoop.com/us/en/whoop-trials/

It tracks your activity and breaks everything down into 3 scores; sleep, recovery, and strain. I do tend to get higher strain scores in part because of my health issues and it’s been really helpful in helping me feel better when to push and when to rest. It’s also got an AI coach that can sift through your data and answer questions and make recommendations which I find really helpful.

[paintedpennypony]

Have any of you told your employers about your fibro diagnosis?

[FjordBCRF]

I’ve been relatively open about my health issues and when Covid hit and we went remote, my boss worked with me to get an ADA accommodation for remote work since she assumed they would bring us back in eventually.

I don’t have fibro, but I have a couple autoimmune diseases and a connective tissue disease, so me not getting sick is the rationale for that, and minimizing exposure is the best way to do that. I’ve had that in place since 2021 and have to renew it annually.

I’ve been at my company for 13 years and in my current department for 8. Earlier on, I didn’t really advertise my issues, but I wasn’t formally diagnosed until 2015 with the connective tissue disease, and the autoimmune diagnoses came a little after that.

[RMJacobs]

Back when I was working, I told all my managers about my RA diagnosis* except one. That one was early on, I was already working there when I developed RA, and she absolutely would have sidelined me had she known. I was chosen to lead a mission critical project and knew I would be very good at it, regardless of medical problems. And it was a big success.

In the same company, I had a different manager in whom I confided. I never asked for any accommodations in that company, but when I had to travel, the people with whom I traveled knew about my disability and helped me deal with luggage. The next two companies, I told my managers about my RA after I completed my probationary period and they could see that I was a hard worker. I finally asked for some minor accommodations at the last one; I needed a different kind of chair and needed close in parking under cover. That all went fine until the person my manager reported to changed. The new director insisted I park in the outside handicapped parking, which meant getting into a very hot car in the summer and clearing snow in the winter, both of which were a big problem for me. I did system support. I had outed him on doing something that was bringing our system down on a weekend back when we were peers, so he hated my guts and was doing everything he could to make me quit. I obliged him as I just couldn’t keep the pace up any longer. I worked long days and then also frequently worked at night (occasionally all night) when it was my turn in the on call rotation. Between my disability getting worse and this knucklehead director gunning for me, I quit at age 59 and decided that was it for me working. I did not apply for disability.

*I never talked about fibromyalgia. With RA, there was enough of a test and was something people might know exists, so I’d be talking about something people think you can measure (although you really can’t). RA was my biggest problem in those years. Had fibromyalgia been my primary problem, I probably would have mentioned it to the people I told about my RA, as I trusted those people not to buy into the “it’s all in your head” mentality that some people have about fibromyalgia. My fibromyalgia has gotten a lot worse in the nine years since I quit working.

[Annie10]

I have fibro. Diet plays a huge part, at least Ime.
The short version is don’t eat crap. Try to eat clean.
Try to avoid processed food, stuff in a box, and sugar. Inflammation feeds on sugar and the more you feed it the more you’ll hurt.
I did an awful lot of label reading in the beginning.
You don’t have to be radical about it or anything. I mostly eat lots of vegetables, lean proteins, try to avoid pastas, sugars, and again stuff out of a box.
So I drink probably more soda than I should? Yes. Do I eat a piece of birthday cake? Yes. But I try really hard not to eat crap.

[Annie10]

@paintedpennypony

Have you had any side effects? Cymbalta scared me to start because I’ve read that quitting is extremely painful and difficult.

Quitting it is horrible. Make sure if you do go off of it they wean you slowly.
There was a communication breakdown at some point at my doctors when I needed a refill and I ended up going off cold turkey.
It was horrific and that stuff has a long half so it took awhile.
But while I was on it it worked fine and I had no problems. I was on duloxetine and gabapentin at the same time for the fibro.

[Moss]

I don’t have fibro-- my sister and mom do, and I think it’s often a comorbid diagnosis with a lot of autoimmune diseases-- but I don’t tell people about my autoimmune diseases. HR knows my accommodations.

I was on Cymbalta for years for anxiety, depression, and pain, and tapering off of it is the worst experience.