I'm really struggling with chronic pain due to my genetic disorders, I'm not able to afford multiple meds, & I'm *not* okay.

If anyone can help/share, that would be so appreciated, but no one has to! I'm sorry I'm even asking. I need $80USD 😖 I HATE asking, I feel like a JERK, but I don't have other options.

PayPal paypal.me/motleychick
Cashapp $izzi6
Venmo @egdirbretla

#NEISvoid #hEDS #EDS #MECFS #chronicpain #chronicillness #spoonie #spooniechat #longcovid #marfansyndrome #POTS #disabled

I'm really struggling with chronic pain due to my genetic disorders, I'm not able to afford multiple meds, & I'm *not* okay.

If anyone can help/share, that would be so appreciated, but no one has to! I'm sorry I'm even asking. I need $80USD 😖 I HATE asking, I feel like a JERK, but I don't have other options.

PayPal paypal.me/motleychick
Cashapp $izzi6
Venmo @egdirbretla

#NEISvoid #hEDS #EDS #MECFS #chronicpain #chronicillness #spoonie #spooniechat #longcovid #marfansyndrome #POTS #disabled

Have you ever wondered about rheumatoid arthritis but were afraid to ask? Do you want to know my story? #ChronicIllness #ChronicPain

First: RA is an autoimmune disorder where the immune system attacks healthy joint tissue. It’s debilitatingly painful, causes joint deformation, and is difficult to treat in some (lucky me). It can affect organs, too.

Second: Osteoarthritis is common, age related, and happens gradually over time to most who live long enough or have had joint injuries. It’s not autoimmune, it occurs naturally.

Let me show you with these two photos of my hands:

The first one was taken in 2017 when I *first* had symptoms but was dismissed for the next 6 years. At that time, I was diagnosed with #hEDS connective tissue disorder (correct) and it wasn’t further investigated as autoimmune pain (wrong). I finally got diagnosed with #RA in 2023.

The second one was taken this morning. This hand now has constant pain and stiffness. I’m on 3 different medications trying to keep my disease under control.

I’ve used my hands my whole life to enjoy many different hobbies (sports, music, photography). It’s been devastating to lose, but I’m doing my best.

🫶🏻 TY for reading.

🔥 psa for anyone taking quercetin on a regular basis 🔥

this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked!

(and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary)

i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay  

take care people and good luck  

#MCAS #POTS #hEDS #LongCovid #allergies

Today is #MEAwarenessDay!

The Swedish study finding 1 in 5 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/

The study found 20% #pwME studied had #hEDS and 50% had #HSD

This study was prior to the 2026 reclassification merging HSD and hEDS

Given 2026 changes, 44 hEDS + 115 HSD = 159 hEDS of 229 is 69.43%