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I'm new here!

Hi, my name is rachelmiranda. I'm here because I live with Ehlers-Danlos Syndrome, Lipedema, and Interstitial Lung Disease. I am looking for resources, support, and community about living with chronic illness--and looking for a partner while living with these things. I'm also a creative writer, always looking for new pathways to write about this life.
#MightyTogether #PTSD #Grief #EhlersDanlosSyndrome

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I'm new here!

Hi, my name is ME55. I'm here because lipedema has taken over my life, sparked a bad case of lymphedema, and left me surprised, angry, frustrated, name it. I want to benefit from others' knowledge to make the best of this mostly untreatable condition.

#MightyTogether #Lipedema

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Shutting Down

When I started this #Lipedema and #fat shameing group, I envisioned an environment where those of us living with disfiguring and uncomfortable blobs of fat we can't get rid of, could talk. Though I'm certain I'm not the only person, particularly among women, dealing with this kind of disfigurement, that appears to be the case on this particular site. So, let's let this one lie fallow for awhile. Blessings


I'm new here!

Hi, my name is kellsndudz. I'm here because my twin sister deals with chronic pain from EDS and the lipedema related to it. I wish to learn more as a caregiver.


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Discontinued Tampons

Not many people probably think that tampons have anything to do with accessibility but they do. I have been using the same brand fr 30yrs U by Kotex Security. This brand is the only kind that fits my body my hands can grip it with one hand, not 2, and insert almost flawless. Unfortunately they discontinued them. I bleed monthly and go through a box or 2 depending on if I’m having a heavy flow, I never know when this will be. I have to always wear heavy absorbing just in case. But now I’m supposed to rely on other brands that I’ve tried that I can’t even use one handed. Did this company not take into account that they run the market for heavy flow hygiene products? Those with endometriosis or pcos or have hormone fluctuations will now have to rely on inferior products, that aren’t as accessible. I started a petition if you can please sign and share #Endometriosis #PolycysticOvarySyndrome #hormoneimbalance #Lipedema #Accessibility #ThyroidDisease

Sign the Petition

Bring Back U by Kotex Security Tampons
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“Sometimes walls are there so we can lean on them and rest.”

Lately I have been hitting some walls and maybe it’s a sign to rest before fighting on. My body needs breaks and I give it those, why can’t I give myself a break mentally and in fighting the medical profession. A breather may be in order. Everyone out there feeling really tired, lean on that wall for a bit before you climb it. #JointHypermobilitySyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #Lipoedema #Lipedema #PelvicCongestionSyndrome #LivingWithPOTS #Fibromyaliga #ChronicPain #BackPain #HypothyroidismUnderactiveThyroidDisease #Bipolar2Disorder

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First post

I’m 53. For the last 41 years I’ve been dismissed, undiagnosed, misdiagnosed, and now diagnosed but the wrong treatments have poisoned my body creating more issues that my functional medicine doctor still cannot figure out. 13 years ago I was diagnosed with psoriatic arthritis and fibromyalgia. I did monthly remicade infusions for ten years. I had maxed out my dose and intervals but it wasn’t helping as much as I thought it should so my physiatrist prescribed prednisone which was my personal crack! Nothing made me feel as good as steroids. And I was reminded of that every time I went off. I decided I’d rather have a life and deal with any side effects later. I started gaining weight, which was expected, and developing inflammation in weird places that hurt to touch more than normal. All my doctors said it was the prednisone and would go away when I went off it. So I did but it didn’t go away and my body was looking more and more out of proportion. The hard painful fibrous lumps around my mid section kept me from sleeping. The lumps on the inside of my knees hitting each other as I walked created gait issues and pain in my hips. My rheumatologist insisted it was fibro. I finally found answers with the help of Google. Of course there are no doctors in my state that even know about this connective tissue disease so I traveled out of state and out of network and got a confirmed diagnosis of lipedema and have since started the only treatment known to treat this, staged surgery to remove the diseased tissue. I can finally sleep! The lump across my low back that made it feel like I was lying on a log was gone. Now I’m dealing with all the residuals from 41 years of unnecessary meds. I’ve completely given up on traditional medicine and I’m putting all my eggs, even though they’ve long since dried up (teehee) in the one basket of a functional medicine doctor. I’m trying to have faith that she can figure the rest out. I just don’t want to wait another 41 years. Thanks for listening.


Chasing doctors is often worse than the pain

I am sure I am not the only one who feels this way. After every diagnosis I've gotten I've felt like, yes I feel like I've found answers. My body then deteriorates more and in new fun ways so it's back at it. Of course, none of these things are obvious to look at me so you have to go convincing people you actually have more things wrong with you. I am recently back on the "please diagnose me with what's actually wrong with me and help me" train and I was really only off of it for a couple of months. I often feel like saying, "Hi, person living in my own body here. Maybe you could listen to me?" With the Covid shutdowns, it's been almost impossible to get an appointment to even be able to say that to anyone. I completely understand the priorities and I don't want to be selfish but the pain is truly awful. #hypermobilityspectrumdisorders #PelvicCongestionSyndrome #Lipedema #BackPain #ChronicIllness #BipolarDisorder #Anxiety

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