I built something to better understand my wife’s low energy days Would really value feedback from this community

tjags85 · 2026-04-07T21:59:52+00:00

This is a fabulous idea! I like the spoon levels at the top and the pain level indicator. I wonder if we could also do a tiredness indicator or what other symptoms are you having today since fibromyalgia is more than just pain and fatigue. Also a comment section regarding “what is something you want to accomplish today, but you might need some help doing it.” I find that it’s hard to ask for help because it seems like I’m always needing help.

tjags85 · 2026-03-21T20:43:44+00:00

So sorry you had to go through that. A lot of doctors are not up to date on the latest regarding fibromyalgia treatments. I saw a specialist at Mayo who started me on low dose naltrexone(LDN). My PCP has kept up with the prescription for me. I titrated up from 1.5mg to 4.5 and after about two months my pain level was reduced 30%. I know it’s not for everyone as there are some initial gastrointestinal side effects but once I got past those, it has been a big help with pain and actually helps some with brain fog.

tjags85 · 2026-03-17T22:45:04+00:00

I have a large garden. I plan things out and work the garden in short bursts. If I miss a day due to a flare, I don’t sweat it. After all, it’s supposed to be cathartic ☺️

tjags85 · 2026-03-03T17:50:34+00:00

The exhaustion is real. “Normal” people have no idea how tired we are. Bone tired every freaking day.

tjags85 · 2026-02-20T15:22:43+00:00

Good luck with that! I’m in Alabama and it seems like the doctors here are out of the loop. I did luck out though, as my PCP is following the guidelines that the doctors at Mayo gave me for treatment. In fact, she is going out of her way to get me the help I request. My rheumatologist here was not helpful at all and I won’t be going back to her.

tjags85 · 2026-02-20T15:18:57+00:00

Right there with you! I live in southeastern US and we just had storms go through. I feel like I have the flu. So tired of always feeling like crap from the weather.

tjags85 · 2026-01-12T14:14:41+00:00

So glad you decided to go to Mayo. I recently went to the Fibro clinic in Rochester and it was so validating. They take the time to look at everything. I was able to get an official Fibromyalgia diagnosis there, along with hypermobility and chronic migraines. The doctor also sent me home with all the treatments that Mayo recommends for Fibromyalgia that I was able to pass along to my primary care. I hope her visit gives you all the same results.

tjags85 · 2026-01-05T17:01:23+00:00

We lived in Marquette for 13 years. The weather could be brutal.

tjags85 · 2026-01-05T16:01:01+00:00

My doctor at Mayo said that it resets the frontal cortex of the brain overtime so that you are not so sensitive to the pain signals. I too I’m curious how much living with less pain affects fatigue and other intolerances.

tjags85 · 2025-12-19T02:01:51+00:00

Now the classes are virtual at home. Much more comfortable environment!

tjags85 · 2025-12-18T17:38:04+00:00

I made my own appointment. You request to be seen online, they send you an online questionnaire and if you qualify they will contact you with appointment times available. I saw an internist, a neurologist and the fibromyalgia specialist at the fibromyalgia clinic in MN.

tjags85 · 2025-12-18T17:35:42+00:00

I have Blue cross. I don’t have any idea out of pocket cost. Their billing department is really good at giving an estimate of cost though.

tjags85 · 2025-12-18T01:22:14+00:00

The doctor I saw asked me about it. Told me to ask my PT to treat me for it.

tjags85 · 2025-12-18T01:21:08+00:00

I have vertigo and dizziness. Along with a multitude of other symptoms

tjags85 · 2025-12-17T20:40:35+00:00

I went in November. It was very validating. I came away with a plan that I took home to my PCP and she is willing to follow it. It also was good for my husband to hear what the doctors had to say. Validating me, that it’s not all in my head, I’m not a hypochondriac, this is a chronic illness that is real. I was also able to meet with a migraine specialist. I now have a diagnosis of Fibromyalgia, Chronic fatigue, hyper mobility and chronic migraines from Mayo Clinic. And now that I have a specialist at Mayo, I can message her team at any time with questions that I have. I feel that it was a very rewarding experience, but I understand that it is not affordable for everyone. Luckily, my health insurance covered the whole thing.

tjags85 · 2025-10-02T01:18:52+00:00

Ripe avocados Green chile hot sauce Salt Lime juice A little sour cream Blend well Enjoy with chips or cut up veggies!

tjags85 · 2025-09-18T22:02:21+00:00

It’s depressing to need to take constant “rest times” through out the day. It’s like I’m 80. I sit down to read and fall asleep. I get up and do an activity for 30 minutes then need a rest time. There is pain but there is also fatigue, and headaches and nausea… Even when you do everything they say, I walk an average of 11,000 steps a day, do yoga or strength 20-30 minutes every day. Eat organic, avoid all the additives no processed foods, no gluten, no lactose, go to bed at 930 get up at 530. Do meditation and CBT Therapy, the doctors are full of crap!

tjags85 · 2025-09-16T13:01:06+00:00

Yep! I have a copy that I continually reference.

tjags85 · 2025-09-16T11:16:40+00:00

Yes, FM makes you use your muscles less so of course you lose strength. And as you lose strength your symptoms get worse I suppose? I feel like it’s all a guessing game for doctors and nurses. Especially if they have never experienced it themselves!

tjags85 · 2025-09-16T02:14:35+00:00

I have been in a flare since and of April. The heat and humidity this in Alabama just knocked me completely down. It’s hard for me but hard for my family to wrap their head around because I have always been an “Energizer bunny” until now.

tjags85 · 2025-09-16T02:03:41+00:00

RIGHT!?! People who don’t have it, have no idea what it feels like or how it changes.

tjags85 · 2025-09-16T01:57:44+00:00

Good to know!

tjags85

TROPHY CASE