Join the Conversation on
11K people
0 stories
930 posts
Explore Our Newsletters
What's New in fatigue
See full photo

How I got to now with #Fibromyalgia and #FibroFog brain

I searched through all the groups to see which seemed applicable to where I am now. I was diagnosed with FMS 29 years ago, after experiencing - what was being called fibroitis by a mostly “it is real”-denying medical establishment - for many, many years of migraine, overwhelming fatigue, muscle pain, etc.

I read a book about what to pay attention to in your body in mid-life and suggestions of what it may be if you experience these symptoms kind of reference. It’s way easier now to find information, well, and disinformation, am I right?!?! At the time I was having such pain in my neck and shoulders and my back.

I was walking across an outer office, going to my own, when someone whacked me right across my upper back, later described by me: “it was a baseball bat.” But it was not. No one hit me. No one was there. It was the signal : THIS IS ABOUT TO GET VERY REAL. I didn’t know that then, but here, nearly 30 years later, yeah, so very real.
Anyway that book described what I was dealing with, called it by name. You may have fibromyalgia. Eureka!!
So it began - knowing what it is or what some things are - years of learning and suffering. Retiring helped a lot with the pain, because so much stress was lifted away. That was 17 years ago. And medication. Better body mechanics learned. All that goes with it. The fog and fatigue now seem like plagues. Muscle weakness.
I would love to get enough sleep.
If you are still reading this way too long missive, you will be glad to know I’m too foggy and tired to keep going for now. #FibroFog #Fatigue

18 reactions 3 comments
See full photo

____ fills my cup.

When our figurative cup is empty, it means our energy is depleted, we’ve run out of spoons, and we’re at a greater risk of burning ourselves out. Stress, mental and physical illness, overwhelming responsibilities, and trying to meet unreasonable expectations can all take away from our cup.

So what can we do to refill our cup? As cliché as it sounds, self-care can bring us back to baseline. It’s important to balance obligations and tasks that require us to pour from our cups with activities that bring us joy and replenish our energy. These activities might look like returning to a favorite hobby or getting a full night’s sleep.

Do you know what fills your cup? How can you make replenishing your cup part of your daily routine?

It’s important to note that what works for one person might not work for someone else. Our health conditions can also make it easier for our cups to empty, as well as more difficult to fill back up. It’s all about finding the balance that works for you. 💖

#MightyMinute #selfcare #MentalHealth #SpoonieLifeHacks #Disability #ChronicIllness #ChronicPain #Fatigue #CheckInWithMe #Caregiving #Parenting #52SmallThings #RareDisease

201 reactions 47 comments
See full photo

I'm tired of having to explain ____.

What symptom are you tired of explaining to others?

I feel like it comes with the territory of having a chronic physical or mental illness of any kind: We repeatedly have to explain our symptoms to others. While it’s nice that folks who don’t know what it’s like to live with a health condition want to learn more about how we’re affected by ours, it can be exhausting to serve as educators on our symptoms while dealing with those same symptoms.

For today’s Mighty Minute prompt, let’s have a good old-fashioned vent session. Sound off in the comments about the symptom you’re tired of explaining to others!

Here’s mine: I’m tired of having to explain my fatigue! Not only is fatigue a symptom of basically every mental and physical condition I live with, it is the one I am most consistently annoyed by and the one I am most self-conscious of. It doesn’t help when others ask why I’m so “lazy” or “tired” all the time. I can’t even begin to fathom the number of times I’ve had to explain to able-bodied people how my tired is far, far, far different from their tired. And that, no, drinking more water, getting more sleep, and going for a run first thing in the morning will not alleviate this kind of tired.

#MightyMinute #CheckInWithMe #MyalgicEncephalomyelitis #EhlersDanlosSyndrome #Fatigue #ChronicIllness #MentalHealth #ChronicPain #Disability #RareDisease #BorderlinePersonalityDisorder #Schizophrenia #DissociativeIdentityDisorder #Migraine #Spoonie

235 reactions 47 comments

Cushing's diagnosis-questioning my dr

I have read up on #CushingsSyndrome for quite some time given I have the physical appearance symptoms that come with that dx and all of the body dysfunction symtoms like extreme #Fatigue , poor wound healing, #Anxiety /depression, I've even broken bones from a fall that shouldn't have resulted in a break. I tested positive for too much cortisol for a low dose overnight dexamethasone test. Since I tested positive for the low dose they did a high dose suppression test which from all my results is used to differentiate why the cortisol was high in the first test. My endo messaged me after the second test and basically said nm your #Cortisol levels are normal?!? We're not going to look in to all your symptoms any further. WTH? What would you guys do if you were in my position?

2 reactions 5 comments

Derealization and vision problems?

So I’m in derealization pretty bad right now. My vision is so bad. I can see but everything feels like it’s a mile away. Out of focus but not quite blurry. Maybe it’s fatigue. But do I need to get my eyes checked or is this a common thing with derealization? #DerealizationDisorder #DissociationDisorders #Depression #Fatigue

13 reactions 4 comments
This photo may contain sensitive content.

Swallowing and speech problems are common with MS — How to manage them?

Swallowing is something that's so automatic, we take it for granted. Until something changes. Dr. Marissa Barrera joins me to discuss common MS-related speech & swallowing issues -- and what you can do to improve them.

Jon Strum on X

#SwallowingProblems #speech #MightyTogether #MultipleSclerosis #Disability #ChronicIllness #newlydiagnosed #Caregiving #Fatigue

Jon Strum on X

https://t.co/b4RCjfDnuY Swallowing is something that's so automatic, we take it for granted. Until something changes. Dr. Marissa Barrera joins me to discuss common MS-related speech & swallowing issues -- and what you can do to improve them. On RealTalk MS #MultipleSclerosis
2 reactions 1 comment

How do you say no to your little nieces, nephews and children?

I’m currently a first time aunt (although my sister is 21 weeks pregnant right now) to an absolutely gorgeous and clever little boy named Oskar. He’s 22months old, and I absolutely love playing with him. I chase him, I crawl towards him on my hands and knees. I play rough with him (he loves this), and I tickle him until he’s belly laughing.

He is truly the light of my life - since he was born I’ve refused to self harm and I’ve really started taking better care of myself. But sometimes when we’re playing, I start to get pain or get really exhausted and I have to tell him no and sit down for a bit. But then he comes over, grabs my hands and tries to pull me up and make me follow him.

It really breaks my heart because I know he doesn’t really understand and he thinks he’s done something wrong. How do YOU communicate that you need a break? Is there a way to do it so he understands? He can get quite upset. Aside from his dad, I’m the only person that really plays with him and makes him laugh.

Any and all advice would be greatly appreciated!

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #BPD #LiverDisease #Jointpain #Diabetes #InterstitialCystitis #Migraines #Depression #Fatigue #Children #Advice

32 reactions 9 comments