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Rima1's Achievements


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  1. Thanks all, Jackie M, what do you make your broth from? Many thanks
  2. Do people here drink these instead of water (just been advised to do this)? Can you drink too much of them? I've had a look at a few online and most seem to contain a lot of flavourings etc. Are there any that are 'healthy'? What is it in the drinks we actually need? Does the sugar content need to be there? Many thanks C
  3. Yes, I'm hypermobile too... however I have disabling fatigue with it. Thankfully though, it causes me little pain.
  4. I'm in Devon, I was diagnoised with PoTS in Novermber after reading about it online and thinking 'bloody ****, that's me' (22 years after i became ill...better late than never!). I see Professor Mathias and have an appt with Professor Grahame for joint hypermobility later this month. I'm still stunned at the jigsaw of symptoms/conditions that's suddenly slotting together. I had to self refer privately after a NHS tilt table resulted in the neurologist telling me 'you're just one of those people who can't stand for 20 minutes'....not being quite sure who 'those people' were I wasn't prepared to be fobbed off again. My GP has never heard of PoTS and seems totally disinterested, he is however prescribing the recommended drugs. I've had years of being told I'm somatising or depressed or have medically unexplained symptoms, so it's very nice to now feel vindicated!
  5. Thank you all for your kind responses and warm welcome. Hum, working a full week has never been a possibility but i don't want to flatten myself so much getting trained that i can't look after my kids/work at all. What i can do at the moment is very limited. My university are seriously not being supportive in allowing me to pace myself. Anyway, I need to wait and see what's said at this appointment - thanks again all.
  6. Hi, I'm new here though not new to the symptoms of dysautonomia. I've been unwell since i was 14 and am now 35. I've had various diagnoses of ME/chronic fatigue/Lyme disease (this was contested btw different Doctors). Treatment for Lyme made no noticable difference. I've also been diagnosed with EDS type 3. The neruologist last week said I've never had ME/chronic fatigue but that it's been dysautonomia all along - possibly will a Lyme factor to it. He also mentioned mast cell dysfunction, highlighted the EDS and said something about vascular something... I had autonomic testing last week in London and am waiting for results. I've been pushing myself physically and mentally for 2 years as I'm trying to train for a job I love. This however necessitates a weekly 7 hour round trip (over 2 days) and working on placement for 1 day a week (should be 2, I can't do 2). I have 2 children aged 3 and 6. Basically though, I'm crashing. I'm finding that i can do less and less and some of my symptoms are getting dramatically worse (fatigue, dizziness). I'm getting episodic numbness in my face/right arm (does this sound like dysautonomia?). My question is this - does pushing yourself physically/mentally potentially cause long term worsening of illness/does it damage us? Or, when I stop pushing myself will i recover to my normal level of unwell? I'm sensing that i'm asking a question that may well not have an answer. I'm also coming to realise that soon I'm going to grind to a halt and simply be unable to continue. My hope is that some treatment will be proposed next week that may help me keep going. Is this a realistic hope? I've already upped my salt/water dramatically, but with no noticeable improvement. Thanks for reading this. It's an incredibly lonely place to be as I find conveying how ill i perpetually feel pretty much impossible to convey.
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