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    Community Voices

    What should I do about the hot weather?

    Hey, everyone. I hope you're all okay and doing as well as you possibly can be. I'm very desperate for some advice on the weather for Monday and Tuesday this week.

    My health rapidly gets worse in warm weather. My POTS acts up and I faint a LOT, my joints end up hurting really badly, I get muscle cramps and I dehydrate VERY easily. And when I'm dehydrated, my bladder condition flares up and becomes extremely painful.

    On both Monday and Tuesday it's meant to be over 40 degrees, and I can see myself suffering really badly. Does anyone have any tips/hacks/advice for me? I'm willing to try anything. I'm going to keep bottled water in the fridge, make sure I drink as much as I can without popping, and I'll probably stay in bed with my fan directed at me.

    Thank you all in advance.

    #posturalorthostatictachycardia #EDS #POTS #NAFLD #Diabetes #InterstitialCystitis #Migraines #ChronicPain #hotweather #Tipsandadvice #pleasehelp

    12 people are talking about this
    Community Voices

    Dang illnesses

    <p>Dang illnesses</p>
    Community Voices

    Tech support needed :)

    Hey guys,

    I’m not getting notifications for comments, etc on my posts, even though I have notifications turned on under my preferences and in settings on my phone (iPhone). I am using the app.

    It is probably worth noting that I got one or two notifications just after I re-enabled notifications, but after that no notifications.

    Can anybody help?

    #Notifications #techsupport #pleasehelp

    Community Voices

    I don’t have enough time or coloring supplies to deal with this ish no more

    <p>I don’t have enough time or coloring supplies to deal with this ish no more</p>
    2 people are talking about this
    Community Voices

    Anyone else? *trigger warning

    Is anyone else mentally stuck at one age due to trauma? I can’t be the only one… I was abused a lot thru my life but what stuck me at 17, not feeling like life has been real since, was when I was handcuffed to a chair and someone played Russian Roulette with my head.. my therapist isn’t helping much and my quality of mental health is declining as I physically age #CPTSD #DissociationDisorders #Trauma #pleasehelp

    5 people are talking about this
    Community Voices

    I think I need help…

    So for my whole life, my eating habits have been extremely weird. I am VERY rarely hungry during the day, and often just the idea of food makes me feel like I’m going to be sick. Sometimes I go days with maybe just a mouthful of food here and there. If I eat at all, it’s usually in the middle of the night.

    HOWEVER. When I reach my time of the month… I feel like I’m starving. My belly grumbles so loudly it actually hurts. And the longer I try to go without eating as much as my stomach wants, the more it hurts and it sometimes even makes me cry. Thankfully, my periods are EXTREMELY irregular. I have maybe one period a year at the most. But for that one week… I just can’t stop eating. Trying to ignore it genuinely feels like torture.

    Does anyone else have anything like this? My friend is a nutritionist and she thinks I have an eating disorder. But I’ve been this way for my whole life.

    Any suggestions are VERY much appreciated. Thank you all in advance.

    #chronicillnesswarrior #ChronicPain #POTS #Dysautonomia #EhlersDanlos #jointhypermobility #NAFLD #BPD #Diabetes #InterstitialCystitis #Migraines #Insomnia #EatingDisorder #eatingproblems #pleasehelp

    3 people are talking about this
    Community Voices
    Community Voices

    Paranoid or reality?

    How can you tell when something that is happening to you is just paranoid overthinking or its based in reality? I believe there is something awful out there about me on the internet accusing me of awful, untrue things, due to interactions and events that I connect together over a span of time. People tell me that I'm just being paranoid because they have not seen or heard anything and I haven't been able to find said post in all my searching. #Paranoid #Reality #pleasehelp

    12 people are talking about this
    Community Voices

    What are some ways to deal with pain that keeps getting worse?

    I really need some tips...light exercises, good heating pads, whatever can help me live my daily life. I have very limited mobility & use a walker, and I am seeing a pain management doctor, but need to switch because he has stopped listening to me. He comes in the room with my prescriptions already printed, signs them while I'm talking, and sends me on my way. The pain just keeps getting worse. Does anyone have tips to help me get at least a little relief? #EhlersDanlosSyndrome #ChronicPain #Fibromyalgia   #Disability   #HypermobileTypeEDS   #EDSers #pleasehelp #PainManagement #Edssucks

    21 people are talking about this
    Community Voices

    Just had surgery....please help!!

    So I put off having knee surgery for 7 months and finally got it done the other day. I am in EXCRUCIATING pain. They gave me a lot of pain killers at the hospital before i was discharged. But they haven't helped at all. Sent me home with percs too and nothing has worked. It feels like someone shot me in the knee and there's an open wound. I can't move at all without help. I've never been In this much pain before. And i understand my fibromyalgia is probably contributing to the pain. But my chest is always tight, I start sobbing randomly because it hurts so bad, i can't stop shaking. I'm not showing signs of infection but I also don't think this is normal. This is my first surgery and I am completely freaking out. I won't be seeing the doctor till next week at some point to get my bandages changed and I have no idea what to do in the meantime. And cant take any of my medical marijuana till they tell me. I'll take any suggestions, please help!! #Surgery #kneesurgery #Pain #excruciating #suggestions #pleasehelp #Fibromyalgia

    7 people are talking about this