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    Infections and Insomnia

    Hey, everyone. I hope you're all doing well!

    I just had a question to ask...

    So, from 14th April and up til today, I had a raging sinus infection. My eyes were so swollen, and you could actually SEE my sinuses above and around my eyebrows and eyes. My whole face ached so fiercely and I often ended up in tears because of it. Which made things so much worse.

    At night time, I'd crawl into bed at 9pm and according to my mother, I was asleep within minutes (she could hear me snoring faintly). Which is very weird, because I have pretty bad insomnia. It normally takes me hours to fall asleep and even then I usually end up having to get up to pee multiple times.

    This isn't the first time my body has done this. Nine years ago I developed a very serious case of tonsillitis. My GP called an ambulance because my fever was at degrees centigrade. For the entire of the ambulance ride I was drifting in and out of consciousness and by the time we arrived at the hospital, I started having seizures because my fever was so high. I don't remember any of this - I was so out of it. I had to stay in the hospital for two weeks, and for about 90% of my stay there, I was asleep.

    This now happens every single time I get an infection. Doesn't matter what type, though. It could be a UTI, laryngitis, chest infection, winter vomiting bug, etc. It's like it knocks me out.

    So, I guess my question is... Does anyone else have experiences like this? I'd love to know how you handle it and whatnot.

    Have a great day, everyone!

    #posturalorthostatictachycardia #POTS #POTSUK #EhlersDanlos #EDS #ChronicPain #chronicillnesswarrior #NAFLD #LiverDisease #IBS #BPD #InterstitialCystitis #ic #Migraines #Diabetes #Infection #Insomnia #jointhypermobility #Advice

    2 reactions 1 comment

    Joint Hypermobility and Chiropractor

    So, my doctors strongly suspect I have hEDS. I have a fair few symptoms, and my rheumatologist is “pretty sure” I have it. My joints regularly scrape in their sockets and crack extremely loudly. More often than not I’ll be doing something perfectly mundane and all of a sudden, people hear a loud crack and they whip their heads in my direction and ask what the hell they just heard!

    Anyway… For a very long time I’ve wanted to see if a chiropractor would help. Or would it make it worse? I dunno. I guess I just want some advice before I fork out for the assessment fee!

    #ChronicPain #EDS #HEDS #POTS #Jointpain #jointhypermobility #Chiropractor #PainfulJoints #Advice

    5 reactions 4 comments
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    I feel better!

    I absolutely SMASHED my steps goal today! My daily goal is 6000, so I’m well over. I feel quite tired, and a little bit sore… But I also feel good for it!

    Last week, when I hit 10k, I was left in pain for days because I was stupid and didn’t respect my own limits. But today I did it slowly, bit by bit. Rather than doing it all in one go, alongside my sister who always speed walks, leaving me to practically jog to keep up with her, I took my time.

    Today I went for three walks, at my own speed, and I took breaks during each walk. I also took my toddler nephew to the park, which we both really enjoyed.

    Anyway… I just wanted to share something positive for a change, haha! I hope you’re all doing well. 😊

    #chronicillnesswarrior #ChronicPain #POTS #EDS #Dysautonomia #NAFLD #LiverDisease #Diabetes #Migraines #jointhypermobility #BPD #Depression #Anxiety #obese #InterstitialCystitis #Exercise #Walking

    16 reactions 7 comments
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    10,000 steps in one day!

    It has been many, many years since I last managed to take over ten thousand steps in a single day! But, I’m very pleased I managed it.

    With the help of my little sister, I’m walking more and more and my stamina is slowly increasing! As is my strength. The weight that I’ve so desperately wanted lose is now practically falling off!

    I’ve got this! 💪

    #chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #EhlersDanlosSyndrome #EDS #jointhypermobility #Jointpain #BPD #EUPD #NAFLD #LiverDisease #Diabetes #WeightLoss #InterstitialCysitis #Epxercise #Fitbit #happy

    28 reactions 5 comments

    Has anyone tried LDN? #Fibromyalgia #Depression #chronicmigraine #jointhypermobility #IBS

    Hi, you all! A couple of months ago my PA who I see for fibromyalgia pain, pain from joint hypermobility, and chronic migraines put me on low dose naltrexone (LDN). This is supposed to work over time to increase the body’s opiate receptors and also increase the body’s opiate production. I’m starting to feel a bit more energetic and am keeping my fingers crossed. It can be helpful also for depression and IBS (also issues for me).

    Has anyone had any experience with
    this medication? I’m curious to hear!


    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


    Hey Zebras! How many of you are talented in things like music, art, sport?

    Apparently being hypermobile gives us advantages in life aside from just being particularly difficult. How many of you are talented in means of art, music, sport, etc?
    My specialist believes that hypermobility gives us a strong advantage in these things. Most zebras I've met are gifted in one or sometimes all of these categories. So tell me, what's your talent?

    #EDS #EhlersDanlosSyndrome #hypermobile #Hypermobility #ChronicPain #ChronicIllness #jointhypermobility #HEDS #ceds #VEDS #JointHypermobilitySyndrome #hypermobilityspectrumdisorder #begnignjointhypermobility


    Makes sense now #jointhypermobility

    So I've only found out about Joint Hypermobility recently, and I've got lightbulbs going off all over the place. So many things suddenly make sense! All the weird injuries and pain... I wish I had found out earlier, but it's nice to not just feel ridiculous.