An almost diagnosis

I’ve been trying to find another website that quickly and easily explains what the doctors (finally) think is up…but I can’t. So I will try and explain how I see it – which might include medical inaccuracies but I’m doing the best with what I’ve been told and what I have read.
This is how my brain has interpreted it.

The underlying condition behind my possible condition is hypermobility. Put simply, due to a problem with the collagen in my body, everything is just way too bendy and stretchy. This means my blood vessels and all sorts of other things are too elastic.

So take some of my symptoms for example:

  • My stomach doesn’t have the ping in it to really get my food moving so it sits about making me bloated and sicky and uncomfortable. This means smaller, easier to digest foods and not too many icky carbs which my stretchy stomach can’t handle.
  • It can cause migraines. I can’t find an explanation of why anywhere but I assume it’s something to do with my blood vessels not contracting properly and the blood all wooshing around too freely. This can mean it sometimes ends up all down in my legs with not a lot left for the rest of me – a bit like a man’s brain and his penis trying to think at the same time.
  • Somehow or another, this can also lead to Restless Leg Syndrome which is the probable cause of me feeling like I never, ever sleep. My sleep is disturbed and I rarely get into that nice, deep REM sleep that makes you feel fresh as a daisy because my legs are twitching away while I sleep.

The main outcome of this is that the consultant thinks I have, as a result of the hypermobility and way too elastic blood vessels, something called PoTs (Postural Tachycardia Syndrome). In simple terms, this is an abnormal response by the involuntary nervous system to becoming upright. This part of the nervous system is in charge of all bodily functions that we don’t have to think about, such as:

Heart rate and blood pressure
Digestion
Stress response

Basically, I stand up and my body thinks “HOLY SHIT, WHAT ARE YOU DOING”. Because of my stretchy blood vessels, too much blood rushes down to my legs leaving none for the rest of me….so my body then wants to lay back down again, quickly, and not do anything for a while.

Anyhow, more can be read about it if anyone is interested, here.

So I think I explained that all ok, considering.

I’m now waiting on a letter and yet more wonderful test to confirm that the doctor is right. It’s all a bit much to take in and get my head around as not an awful lot is known about it. I will just be glad when I have an explanation as to why I always feel like crap.

At least now I know that it wasn’t all in my head, as my GP was trying to imply.

16 thoughts on “An almost diagnosis

  1. DiscoMcDisco says:

    GP’s suck. I always walk in and say “I would like a referal to a specialist” and make them do that instead. I really don’t trust them in the slightest.

    Glad you’re finally getting somewhere with this though hun 🙂

    Like

  2. Georgia says:

    I meant to give you this link to the Hypermobility support group. http://www.hypermobility.org/ (my mum used to help run it but it’s grown a bit since then).
    The guy who writes a lot of it is our consultant Prof Grahame and he is the absolute top dog in this field. If you can get a referral to his clinic it might be good and he’s at University College Hospital. He’s amazing and started the clinic when Hypermobility was hardly recognised at all. He’s great for advice. I don’t think he actually runs the clinic now but his colleagues are equally lovely.

    Like

    • pinkjellybaby says:

      Thank you, I was looking at that earlier! I’m not sure if it’s something I’m being referred for yet, I guess I’ll see after all the tests?

      Like

  3. Georgia says:

    I went to the clinic when I was a child and got diagnosed and then he told me to come back for advice when I was thinking about Children. I never had to as I havent had any ill effects. I hope you get it sorted. Is there medication they can give you for the low blood pressure thingy?
    (my mum also has that thing where blood pools in her legs and has low blood pressure because of it – I’ll have to see if she’s got any words of wisdom for you!)

    Like

  4. pinkjellybaby says:

    I think there’s something they can give me for the restless leg so that I can sleep but not sure about the PoTs. Depends if it’s caused by the hypermobility (in which case think I just have to deal with it!) or because my blood pressure can’t regulate itself – in which case there’s medication I can take.

    That’s if I understood all the things he said at me!

    Like

  5. I have hypermobility syndrome too, it can be a bit of a nightmare but it’s worth the trial and error to find what works for you in managing it because it is possible to feel so much better. At least knowing what it is gives you a starting point to feeling better 🙂 Best of luck x

    Like

    • pinkjellybaby says:

      Hi! How do you deal with yours? I’ve not been told an awful lot by the doctor apart from try staying away from carbs and have read to try and have smaller meals!

      Like

  6. je_suis_hannah says:

    That’s awesome that you have a diagnosis but a bit rubbish that it’s taken so long. I have no idea about hyper mobility but I have something very closely linked to pots and have been on medication now for maybe 8 years (maybe even longer) and will be on it for life and since then I’ve seen a drastic improvement. The best things for pots etc is to drink lots and lots of fluids, more than the recommended intake and to eat small meals. This is really important!! If I eat a big meal I immediately feel awful and want to collapse. This for me is probably the one thing that makes my symptoms 10x worse. And weirdly alcohol helps. A lot. It’s probably the one thing where alcohol is good for you 🙂

    Like

    • pinkjellybaby says:

      I don’t think I will be able to have medication for it as the cause is probably my hypermobility and not the bit in my brain that regulates blood pressure (although I’m going for tests to check this). It will likely be finding ways to manage it, such as lots of fluids, more salt and the right kind of food and exercise. For me, it’s the opposite, alcohol makes it a LOT worse!!

      Like

  7. Laura says:

    We knew each other a while ago (through the Bees), had our little to-dos over the years, but I randomly just thought of you and checked your old blog …. redirected here, and found this. Firstly HUGE congrats heartwarming stuff re: the fella. Secondly, I have a little newly acquired experience in food intolerances, hypermobility etc as I had a new little bub last year and she’s been more than a little poorly with similar stuff. We’re dairy, egg, wheat/gluten and soy free for now, she’s 11 mths and it’s been a tough road. Possible hypermobility but thankfully not to any great extent it would seem. But I get it.
    Just wanted to extend sympathy I guess, and pre-warn …. bubbas, when they come, could well be affected, so just have it at the forefront of your mind if they seem a little unhappy as newborns and you’ll have them all looked after & comfy as they can be as soon as poss. or they could escape it all almost entirely like my first did. Good luck !
    Laura xxxx

    Like

    • pinkjellybaby says:

      Hi Laura, sorry to hear about your little one, especially after all of the complications that you had with the first. All of those allergies are difficult but I really recomment the Sainsbury’s Free From range which I think is mostly free from all those things – I’m sure you have discovered that though!
      I think it’s all just frustrating because a lot of the time, it’s almost trial and error. Also because my symptoms are almost generic, it’s been a long process of elimination and they still think there’s some things they might be missing so onto more tests. I’ll get there I suppose, I’d just really like to feel better!

      Like

  8. Food wise I do find eating smaller amounts helps and limiting carbs, other than white rice which weirdly seems to be fine! Anything too high in fibre causes me problems too. If it gets particularly bad I do a couple of days of only eating really easy to digest things, like blended soups and yoghurts, and that seems to help, which makes sense I suppose! 🙂

    Like

  9. LofRede says:

    Sorry it’s taken me a few days to reply, just wanted to say i’m so pleased that you finally have a diagnosis and can start moving forward with your life. It must be debilitating knowing there is something wrong but having medical people not find a cause so onwards and upwards

    Much love

    L x

    Like

  10. Rachel says:

    I am about to cry. I have been searching for 6 months going from doctor to doctor to doctor with no help. I just found your blog from another blog and your symptoms sound just like mine. This has never even been brought up. You may have just saved me more months of agony. Thank you.

    Like

    • pinkjellybaby says:

      Oh I’m so glad I could help in some way. I will say that this is something that not many doctors seem to know about, so you might have to hunt about for someone who is a specialist….but once you do, you’ll be much better off. If you have any questions, I might not be able to answer them but please do ask x

      Like

Comments are closed.

%d bloggers like this: