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hiya everyone,
i’m new to this forum so i’m just saying hi! :coolsmile: I have EDS, PoTS, Gastroparesis, Gastro-oesophageal reflux disorder, fibromyagia, CFS, multiple joint dysplasia, and tons of other problems but these are my most troublesome.
i’m active on a lot of other forums (facebook, butyoudontlooksick, HMSA boards, EDS support uk, ouch too and probably others that i cant think of right now, probably as its 2am here…. oops. meant to go to bed at midnight! :red: ) so you might already know my username. looking forward to posting on these boards, once filters stop discarding all my attempts as it thinks i’m a spammer. tried to post a few times tonight and that’s driving me mad!
anyway…. off on a tangent- sorry! i’m 30, female and a bit crazy (i blame the pain….), love bright colours and so have covered my wheelchair in bright stickers and the wheels in spoke riders and light units (designed for kids bikes) so i’m my own personal disco and often give kids whiplash as they turn to look at me! lol! i adore cats and have my geriatric kitty living here with me (and currently snoring really loudly…. at least one of us is asleep! 😆 ), she’s 18 and still going strong. must be due to me spoiling her rotten! i play parabadminton (started about 2 months ago) and totally loving it! i’ve found a physical hobby again! wooohoo! had to give it up 16 years ago as i was too broken to play on foot but had to wait until i got broken enough to get a wheelchair to be able to play again. so i’m very happy at the moment! i’m already quite good so they’re talking about trying out for some of the big teams (like the england wheelchair team… gulp! :bug: ) dont think i’m good enough yet though! still need to get a badminton wheelchair as normal chairs tip over to easy, but they’ll move the same so while the club get some i can borrow i’m just trying my best to learn! i adore books and probably have enough to open my own library, and i love to knit and crochet but i’m still learning so a bit rubbish at the moment. can make some great crochet animals though, but my nephew (he’s 4 next week) pinches them as soon as he sees them so i havent got any around me. its very cute- he puts them behind his back and reverses out the door so i cant see he’s got it (but i can cos its super obvious. love how kids think)! lol! 😆 )
i’m generally a happy person but prone to bouts of depression, sometimes really bad bouts and i get a bit scared about what i want to do to myself (in those moods i think i’m bad and need to be punished (ie hurt)) but i’ve got a great support network of pals that are great and really helpful. uum, dont know what else to say! i work 3 hours a week for the HR dept of a garden centre (i look out onto all the roses on display, it’s really nice) just to get out f the house as i’m not well enough to do any more. but they’re great and super flexible when i work so i can change my day and time etc if i dont feel up to it (a whole new experience for me!), and i like chocolate and haribo waaaay too much 🙄
ooh, best go- a crane fly is trying to incinerate itself in my halogen heater… :ohh: dont want it to short out the tubes (or go on fire) as i need the unit to work over winter or i’ll get frostbite as my central heating is just too expensive to run!
byeeee!
fi xx
Hi fi! Welcome to our crazy world! It sounds like you’ll fit right in. ha.
Badmitton — I’ve always LOVED badmitton – I had no idea you could play that in a wheelchair. How great is that?!
Now, it’s not all about me here, but with your symptoms and the success many of us are experiencing with mast cell treatment and taking pressure off of our brains, I’m curious if you’ve seen The Driscoll Theory or tried any of those avenues? I’m on a mission to improve our lives! To find the introductory video, the downloadable paper and all of the references hyperlinked, just go here:
http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theorySo glad you could join us! And so sorry about the spam filter… The spam saga continues… 🙂 Big hug, Diana
hiya,
only just been diagnosed with PoTS so not even looked into mast cells yet but its been something i’ve been thinking about for a while…. will give my dr a little while to mull over all the PoTS info i gave him before tackling mast cells with him. and give me time to develop a good argument for testing! PoTS was an epic battle to get diagnosed and has taken several years (although much less than getting my EDS diagnosis 😆
will be looking at your video again now i’ve had confirmation that my PoTS symptoms are real and not in my imagination as my old doctor told me. i changed doctors after that, she told it to me for long enough (about the eds diagnosis) and i was fair and gave her a 2nd chance but she blew it! 😆
fi
will be looking at your video again now i’ve had confirmation that my PoTS symptoms are real and not in my imagination as my old doctor told me.
fiHi fi,
I just put up my POTS and dysautonomia video that may help. I think we all need to wear pins when we finally find a doctor who listens and “gets it”. You will be shocked at how many of your POTS symptoms may be relieved with mast cell treatment. In our family, we started with over-the-counter Zantac and Zyrtec (double doses, ask your doctor), and within days, we started to improve. Now we’re on the “good stuff” (prescription) and continuing to fine tune the medications. It has given us much more functionality, and there are a lot more smiles in our home now! Big hug, Dianahiya,
I;ve tried zantac in the past and i had a severe reaction to it- i have gastroparesis and the zantac removed any nautral gut motility that i had, the whole system stopped and i was pretty sick for almost a year, so methinks i’d best avoid that one! do you need to take them both together to get the benefits? if you do then i’ve got no chance! lol!
Fi
hiya,
I;ve tried zantac in the past and i had a severe reaction to it- i have gastroparesis and the zantac removed any nautral gut motility that i had, the whole system stopped and i was pretty sick for almost a year, so methinks i’d best avoid that one! do you need to take them both together to get the benefits? if you do then i’ve got no chance! lol!
Hi Fi! A lot of people get benefits from just one or the other. The H1 antagonists (like Zyrtec or Benadryl) are great. It’s best if you can add an H2 antagonist also (there are 4 approved by the FDA — cimetidine, ranitidine, famotidine, and nizatidine. But if you can’t, you can’t! I would talk to your doctor about a mast cell stabilizer, though. That may end up being the most important treatment for you — Cromolyn Sodium in the U.S. or Ketotifen in Canada.And a mast cell specialist who understands the connection to EDS would be an important member of your team. Will you keep us posted? 🙂 DianaFi
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