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Ehlers-Danlos Syndromes

Ehlers-Danlos support group and discussion community

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Ehlers-Danlos Syndromes

Anyone else have problems with their nails?

In: General discussion

Fredericka's Avatar
Fredericka (Inactive)

Fredericka

anyone-else-have-problems-with-their-nails

200212

My finger nails are terrible they are flakey bendy and have a lot of deep ridges they repelle nail varnish (it just peels off) anyone else have this problem and any idea on how I could fix it? I have Ehlers Danlos Syndrome so that might be the reason why. Thank you ... Read More

To fight for opioid therapy, an Inspire member calls for action

Chronic-Inspire's journal

Chronic-Inspire

to-fight-for-opioid-therapy-an-inspire-member-calls-for-action

By Radha_Inspire Digital Editor, Inspire “I think it is time to organize ourselves into a lobbying group somehow.” Constance Small (acorns02459) wrote that on October 19th on Inspire as part of a conversation about what happens when it becomes difficult or impossible to get opioids to treat chronic pain. “I would be very happy to join anyone who would like to organize a campaign to ... Read More

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PLEASE disability help for EDS

mywackybody's journal

mywackybody

please-disability-help-for-eds

Hello all! I have been out of work for over 2 1/2 years. I have a lot of issues, mostly EDS hypermobility that is not just my joints, I have loose vessels so my blood pools in my lower body, I get exhausted easily, autonomic dysfunction, debilitating POTS, complex migraines that I wake up with and make me feel like I am dying, cmc arthritis (4 surgeries), arthritis hip, hands, knees ... Read More

Myositis, Chronic inflamamtion, My Story.

chris1001's journal

chris1001

myositis-chronic-inflamamtion-my-story

I developed symptoms when i was 14 years old doing push ups everyday no rest, i was holding my breath so others couldn't hear i don't know if this is what caused it but i suddenly had bad head ache and i've had symptoms ever since that was December 2005, since i've had two muscle biopsy's one in 2008 then again in 2012 because i wasnted to double check to find cause, the reports came ... Read More

Ehlers-Danlos Syndromes

Cats Do Not Cause Mental Illness

In: Humor

Seshet

cats-do-not-cause-mental-illness

200212

This is just for fun. I've noticed a lot of enthusiasm for cats here. I share that enthusiasm, and right now my cat is sitting next to me as I prepare this post about how pet cats do not cause mental illness. According to recent research, the weak claims in the past that pet cats led to infection by the parasite T. gondii, which in turn altered people's behavior, has not held up to ... Read More

Ehlers-Danlos Syndromes

Ice pick in the chest?

In: Artery / heart / cardiovascular issues

Bellyn

ice-pick-in-the-chest

200212

Does anyone else have random episodes where it feels like an ice pick is being shoved in your chest? Mine always occurs near my heart, but cardiologist just wants me to wear a Holter monitor for two weeks. I also have moments where my heart seems to "trip" as if it is stumbling and will race briefly, then go back to normal. Thoughts? Similarities ... Read More

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Feeling Stuck......With No One to Talk To?

Mandymuff's journal

Mandymuff

feeling-stuck-with-no-one-to-talk-to

There are so many times in our lives when we just wish we had someone to talk to, about or worries, our pain and disappointments, but we feel there is no one who wants to listen, or who would understand.........but, THERE IS ! Here is another great devotional, from Pastor Carnes. “YOU HAVE ACCESS” There are many things in life we are limited to or in some cases do not have access to ... Read More

Dysautonomia Question

Hoolie66's journal

Hoolie66

dysautonomia-question

I'm just recently finally diagnosed with POTS but I've been having symptoms for 3 years. I still have a lot of other undiagnosed symptoms (neurological) and potential of what I suspect to be EDS as well. I have a question for you people with Dysautonomia. So I'm trying the beta blockers, water, gatorade, salt, little bit of physical therapy and my heat rate is improving don't get me ... Read More

Ehlers-Danlos Syndromes

Advice for getting a diagnosis - Melbourne Australia

In: General discussion

Amandaradders

advice-for-getting-a-diagnosis-melbourne-australia

200212

Hi. When I was 15 my doctor diagnosed me as hypermobile after conducting several flexibility tests (Beighton). That was back in 1984 and he simply told me to avoid sports. Seeing as my grandmother, mother and daughter exhibit symptoms of hypermobility, excessive bruising, soft skin, saggy droopy eyelids, asthma, tendency for heavy bleeding in surgery. Now my mother has a heart condition ... Read More

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