Do I?

Hi :) I once asked my doctor about Elhers Danlos Syndrome because the plain hypermobility diagnosis doesn't explain everything. He said that the rheumatologist I saw when I was 15 (I'm 21 now and was 20 at this particular appointment) would have diagnosed me then, when my only problem was back pain! A lot has changed in 6 years!

I had some blood tests for something unrelated (maybe) and there were some discrepancies with my inflammatory markers. They repeated the blood tests months later and they're even more out of range so I've been referred to a musculoskeletal specialist and I hope I'm brave enough to ask about EDS. It just makes sense! And to be honest, people might treat me better and understand that I am in real and constant pain because the looks I get when I explain that I'm "double jointed" are crushing. No I'm not a gymnast, I can't pop my joints out and I'm not super bendy. I am in constant pain, I've been on painkillers since I was 12, I had to be excused from PE a lot which caused the teachers to treat me like crap and mock me because there was "‪always a problem". Yeah there is. ALL of my joints hurt, some more constant than others, sometimes the pain needs "triggering" like dancing or walking for too long or carrying heavy bags or lying down too long because something hurts but I am always in pain. Somehow. And it kills me seeing normal, happy go lucky 20 somethings who probably only pop pills for a hangover. I am covered in stretch marks! My whole belly area is full of old, new and really recent ones, my arms, my inner thighs and the tops of my legs, my knee even has some! I have moderate IBS which isn't officially diagnosed because I'm too embarrassed and Bucopan helps but I've had people tell me that the food I've just eaten can't be the cause of my running to the bathroom in pain because "it hasn't even been digested yet" so I google-oogled and apparently my stomach is so sensitive that anything "bad" hitting it causes the whole digestive system to "malfunction" and expel whatever's already in there, whether it's ready to come out or not. This can be caused by fizzy drinks, even tiny portions of alcohol, greasy food, takeaway food and more. I've had to run to the bathroom in restaurants and at work and spend like 20 minutes in there being super embarrassed! I get headaches a lot, I can't wear my hair up too long, concentrate too long, wear headbands at all, go out in the sun with or without sunglasses. I get really bad chest pains sometimes. My heart skips beats or races a lot. I got diagnosed with a severe vitamin D deficiency which can cause fatigue and mental fog so I put it down to that but I've been on supplements for months now and I'm not feeling any better. I am tired all the time, I can sleep all day and all night! I finally got to live my dream and go to Disneyland Paris on my 21st birthday which was also the day they started the new parade at night and I missed it because I was too tired and "disinterested" at the time. This happens a lot, i make decisions based on how I'm feeling and then kick myself for them right after. My body feels like cement blocks sometimes and I feel so uneasy and wobbly. My knees and ankles sometimes randomly give and I stumble. Every time I say something it's always "you need to exercise more" "wait til you get to my age" "you should try having arthritis" "you should try having ankylosing" and my favourite which is said by my mother at least once a week "I am A LOT older than you".

I know it's horrible to have EDS and even though I'm not diagnosed I do sympathise with all of you, but I'm actually praying they diagnose me with it so I have an answer and an explanation. For me and all of those people that always treat me like I don't deserve to complain or that I'm too young for anything "real".

So based on what I've just said, do you guys think I have it? Thanks in advance xx

12 Replies

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  • Hi. You need a referral to a rheumatologist who knows about hEDS, because you sound like a very strong liklihood. You may also have other ailments (especially auto-immune) with that, as we often have a few! Pots, although very likely, is no longer a diagnostic criteria; just a separate condition that most of us happen to have. IBS is the same.

    My stretch marks are so extensive, they go all the way from armpits to knees - and many were already in place when I was a super skinny 9/10 year old.

    I had a tiny slice of a Warburton's thins bread 2 days ago and the cramps started the second it hit my stomach, and did not stop for seven hours, which was a pain as I was on a Hen do. I did not stay overnight on the Hen do as I knew it would be too much for me, but I did get a lot of pressure about it.

    My ankle is always going out, and (a long time ago) I was carrying my toddler on my shoulders. I fell over, he fractured his skull, cue hospital visit and interviews with consultants about how you can do that...(happily I had witnesses as I was outdoors).

    Just saying these to show that you are not alone in this - we know what it is like and we struggle with the same things. A correct diagnosis would help with your family and friends.

    One thing they are correct about is that you do need to exercise - please don't do what I did which was to exercise less and less over time because it hurt. But it needs to be exercise on your terms: find what you love and do it. My physio suggested pilates (beginner class), but I have found strength training is the answer - target the muscles which are causing pain because they are overused, and spot strength train both that muscle and the cluster of muscles around it and linked to it. As the muscle strengthens, this will then decrease its pain, and improve fatigue at the same time. Some physios know how to specifically plan for this. Have you got a physio?

  • Thank you! Oh I totally agree with exercise as long as it's recommended by someone who knows that they're talking about, not my family members who suggest I do literally everything that they're doing at that particular time 😂 That's why I want to talk to specialists who can really help me :) I love swimming! Yeah whether I'm losing, gaining or staying the same weight, I get stretch marks :( people tell me to lose weight as if it'll make me happy and healthy. The "come down" after exercising is so painful and tiring that I can't do it and have plans later, my joints are going to be crap no matter how much weight they're moving about and if I do get "skinny" and people notice me more (because being in a relationship is a only way to be happy nowadays) I'm still stuck with the stretch marks, no matter how "pretty" I'll be in a size 8/10/12, I'll still be ugly underneath. People don't realise that. One thing I forgot to mention is that I get random "flare ups" where a joint feels sprained or something for a few days and i have to wear a support. It's often my wrists. It's annoying because people think you've read about something, had one symptom and are lying about the others for a diagnosis. That's why I didn't even read the side effects of my new anxiety medication before taking it so I could prove that anything that happened was my body, not my mind. Still didn't get believed about that though. I'm sure some people will misinterpret when I say I want the diagnosis. "How can you want this" but the thing is, if I am diagnosed, I already have it! I don't want the EDS diagnosis specifically, I just want a diagnosis that isn't "hypermobile, hypochondriac with growing pains".

    They sent me for physio when I was 13 for my back and maybe 15 for my shoulders but nothing really helped and they didn't continue seeing me.

  • Stretch marks do not make you ugly; they fade over time, and having hEDS the chances are that your other skin is very youthful looking. By the time you are 50, most women will have stretch marks, and their skin won't look as young as yours. Most guys don't notice stretch marks anyway!

    People will assume hypochondriac until and even after your diagnosis, so don't let that bother you. But definitely go to a rheum and ask for a physio referral. I would have your pain meds reviewed too - your needs and tolerances at 12 will be radically different from now. Good luck.

  • I'm so sorry! I didn't mean that to sound like everyone with stretch marks is ugly or that they're always something to be ashamed of! It's just they're really noticeable on me and they're just another thing for me to feel insecure about :( I'll try. Thank you :) xx

  • No probs - was just saying they will fade in time. I am sure you are beautiful - you sound like a lovely person who deserves to have her symptoms treated seriously!

  • Try eating kefir to help your IBS symptoms. It's easy to digest, & good for nutrients, as well as probiotics that will help improve your digestion.

  • First of all, having seen the rheumatologist at 15 would have been part of the paediatric service. It would make sense that you see someone from an adult service now.

    However, don't jump to conclusions that everything will be related to EDS. People can have many things going on with them at the same time, our bodies don't read the medical text books!

    Many of these symptoms cross over with other conditions. For instance some people are more sensitive to pain than others, and that isn't related to EDS, but it does mean that if you have EDS and are more sensitive to pain you will have different symptoms to others. So it doesn't mean to say that you don't have EDS, but it is important to follow up on the inflammatory markers with the MSK people. Take a list of all your symptoms and when they started, and see what they say.

  • Hi - I've been on the low FODMAP diet for a month and taking collagen supplements. Within the first week or so my joints were feeling better. Not 100% but better. Some foods apparently cause inflammation in my joints and work against my IBS. Give it a try and see if eliminating some foods will help.

  • I the US they call Hypermobility the EDS catagory 3 so in a word, yes you do have it, especially if you have other issues. Some doctors don't really understand EDS at all, especially in the UK, so dont be put off. See another specialist, and also talk about your thoughts with the pain clinic staff. Good luck.

  • I have a 21 year old son with hypermobility and autonomic nervous system dysfunction. If you are able to afford it then I would book an appointment with Dr Alan Hakim at the St John & St Elizabeth Hypermobility Unit, St Johns Wood, London as he is a specialist in hypermobility EDS and there aren't many specialists around. An initial 1 hour consultation costs £300 approx. It can be about a 3 month wait to get an appointment with him but I think its worth the wait. Once he has made a diagnosis he can refer you into the NHS. You can read reviews of Dr Hakim on iwantgreatcare.org.

    Good luck x

  • it does sound like you have EDS, my 20 year old daughter went through this; I diagnosed her 6 years ago, and it took the specialists 4 years to catch up with me when they finally diagnosed her last year!

    However, EDS is a new process for a lot of consultants, they don't understand it, on top of that there are no genetic markers for hEDS; to help them understand it there are new directives which are available on the website: ehlers-danlos.org/about-eds... You should also join as many fb pages as possible.

    Something you do need to know, if you are formally diagnosed then so many of your health problems will be excluded from many private insurance schemes - even if that specific health problem is not caused by EDS - this is because private health companies don't understand this disease either!!!

    Another thing, please don't take strong painkillers, they will be counter effective in the long run. They may stop your digestion working (this is not evidenced online, this is observational) You need to make your body stronger through exercise and diet. I'm afraid that dedication to yourself is the only way.

  • It does sound like you have it and it's awful how disregarded you have been. I had the same for years and finally a couple of years ago I was diagnosed with hEDS, secondary fibromyalgia, Aspergers (now Autism Spectrum Disorder) and last week Endometriosis. I wish I could tell you that it gets better with a diagnosis. There has been no change for me although in theory I'm entitled to be more demanding I suppose, but I'm not. And there's no help forth-coming. The good thing is you know what you're dealing with and those midnight fears of bowl-cancer or whatever can be allayed to a certain extent. You can find the right treatment. BTW alcohol and EDS is a bad combination because it's a vaso-dilator and you'll feel like crap if you drink it. Pilates is generally considered the BEST but take it steady at the start and never push yourself. Follow a Deliciously Ella type diet and you'all feel better than ever. Good luck ☺️🙏🏻🍀💗

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