elhersdanlossyndrome

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    Looking for Med. professional in Edmonton to Diagnose EDS/POTS

    I have been trying to find a physician who will take me seriously. I spent four months documenting my evidence of POTS and EDS, after 6+ months of research. I brought in my binder to a Doctor’s appointment and the Doctor refused to even look at it. He spoke over me the entire time. I’ve been experiencing debilitating pain/symptoms for over 8 years now and my health is rapidly declining.

    Anyone know of any medical professionals in Edmonton who would take my concerns seriously?

    I now have medical trauma from being turned down so many times. It’s making it harder and harder to want to seek help. #EDS #elhersdanlossyndrome #POTS

    5 reactions 4 comments
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    Eds and type 2 diabetes.

    Do any of you suffer from EDS and type 2 diabetes? How do you manage them both with the dietary restrictions? Honestly I’m at a loss, I was told that if you have EDS it is better to be gluten and dairy free. How can a person with type 2 get the carbs and protein when so restricted? #elhersdanlossyndrome #DiabetesType2 #Anxiety #Depression #diverticulosis #Colitis #ChronicPain

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    Does anyone have adaptations for playing the guitar? #Guitar #loosejoints #elhersdanlossyndrome #adaptations

    I am trying to learn guitar but some of my knuckle joints are too loose to form the chords. A lot of fingerbraces seem to cover the spots that need to touch the strings. Has anyone had any luck?

    1 comment
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    Has anyone had an allergic reaction to cannabis? If so was it serve or mild?

    I have been using cannabis for the last year to help manage my pain but I just started having an allergic reaction to it. I am curious if there is anyone else with this issue?
    #MastCellActivationDisorder #Fibromyaliga #elhersdanlossyndrome #MastCellActivationDisorder #RareDisease #LivingWithPOTS

    10 comments
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    Anyone ever been to a Neurological Opthamologist? #DoubleVision #blurryvision #ChronicHeadaches

    So up until about a year ago my vision has been perfect. Slowly and gradually it starting getting worse. I’ve seen an Optometrist and Opthomologist. Both says my eyes are healthy and glasses will not improve anything. So now I have been referred to a Neurological Opthamologist.

    Anyone relate or could tell me your stories?
    #elhersdanlossyndrome
    #Atheosclarosis
    #ColonicInertia
    #TACwithIRA
    #Gastroparesis

    2 comments
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    Living with MCAS among other issues...

    Hello there! I was diagnosed about 3 or 4 years ago and getting answers I was looking for. Problem was it left us with more answers. I am working to find a treatment that works best, but it seems that this is getting the better of me. I am wondering what experiences other people have with this diease and some dos or dont’s or really advice! #MastCellActivationDisorder #MastCellDisease #elhersdanlossyndrome

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    Hysterectomy Recovery: almost 2 months later #Hysterectomy #PMDD

    I woke up this morning and needed to paint this. Almost 4 hours later, I was done. It was then a flood of emotions hit me. I put my hands over my heart and cried as I finally felt the loss.

    I think I can grieve now.

    #TotalHysterectomy #PMDD #Childless #Grief #Depression #Anxiety #elhersdanlossyndrome

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    A poem called Pain Ridden Rainbow by Mica Warsop

    I created this poem based on my chronic pain. It's easy to lose hope when you deal with something that can't be cured or something you live with trying to manage everyday. One thing I have to hold on to is hope it gets better in tiny small doses. I have never experienced a day without pain.. even as a child I always felt my body. So for myself I have to hold on to the hope that my pain may not go all together but changes levels, like the spectrum of a rainbow. It always ranges from 5-10 the 5-7 levels are my best days that come few and far between, but they still come. That's my hope for tomorrow. I hope this poem brings you hope too. #ChronicPain #EDSAwareness #Hypermobility #elhersdanlossyndrome #EDSHT #ChronicIllness #InvisibleIllness #LifeLongCondition #lifelongillness #Fibromyaliga #hypermobileehlers-DanlosSyndrome(hEDS)

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    Is my right knee subluxing?

    I have to have my husband carry most of my weight when trying to walk if I'm going through a bad flare or very tired with fatigue due to chronic pain & hypermobility. I don't always have the strength in my muscles to hold my joints in a stable placement. With every step I've tried to take today, with my husband holding most of my weight, my knee has shaken, given way & gone inwards, the knee cap pointing to the left. It causes so much pain around my knee when it does this. I'd appreciate any comments on anyone's experience with this & advice on what to do about it. Thanks in advance.

    #ChronicIllnessEDS #elhersdanlossyndrome #Hypermobility #ClassicalEhlersDanlosSyndrome #ChronicIllness #LifeLongCondition #bendyjoints #justpoppingout #ClassicalLikeEhlersDanlosSyndrome

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    A Slow Start to a Slow Day

    #elhersdanlossyndrome #Narcolepsy #Anxiety

    Maybe it's fall? Or work? Or covid? But today it's just hard to get out of bed and get moving. I want to slow down and have a lazy morning.
    Every part of my body is sore. There's a chill in the air. I have a paper due on Friday. The coffee is brewing. My cat is being extra snuggly.
    A nap is calling me.
    And oh man, I know that if I nap, I won't wake up until tomorrow. It's just so hard on a day like today to take that stimulant pill and get down to work.
    So maybe I won't ask myself for 100% today. I'll aim for 75%. Cozy and with coffee in hand❤️. I'll eat something nourishing for lunch. I'll do a little yoga. It's a #Selfcare kinda day.

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