Ehlers Danlos – Hypermobile Hell

I finally saw a rheumatologist on Tuesday. Hurrah! HE ACTUALLY WANTED TO HELP ME!! I feel like I perhaps lucked out when my appointment was postponed a month ago, though it didn’t feel like that at the time. While the doctor I was meant to see was probably very nice – she looked very young. I saw an older consultant guy who seemed to really know his stuff and took me seriously. After lots of poking, prodding and stretching he deduced that most of my issues seem to be caused by hyper mobility although at the current time my joints don’t appear to be super mobile because the muscles have seized up to try and control the crappy joints. There isn’t a blood test to confirm Ehlers Danlos syndrome HT, but the doctor seemed pretty convinced – he did take bloods anyway to check for certain markers that may or may not be present. He’s sending me for an urgent MRI to get a better look at my back as hyper mobility seems to have caused the muscles in my lumbar spine to seize up in an effort to protect my joints as can be seen in my regular x-rays, but it can also cause issues with disks in the spine over time. It’s certainly been wreaking havoc with my sacroiliac joint. Fingers crossed that it’s just muscular at this point… He’s also referred me to see a specialist physio team to try and strengthen the right muscles and find ways that I can carry out regular tasks that I currently struggle with.

rack

Feeling a lot like this poor sod today…

Basically, my connective tissue is defective. Connective tissue holds EVERYTHING in your body together which is why *everything* hurts. Not only does it affect your joints and muscles but it also effects your organs which explains my war with IBS and acid reflux. The diarrhoea/constipation lottery has no winners… I am exhausted all the time because my muscles are working twice as hard to try and keep my joints in check. I’m also exhausted because there is nothing in the world more tiring than chronic pain with no medication, even when you do get to sleep, you sometimes wake up feeling like someone has sunk a knife into your thigh because of that angry nerve getting squished somewhere in your pelvis.

EDS would also explain why I was in immeasurable, earth shattering pain following my gynaecological laparoscopy. They had been dragging me around, unconscious, by my legs… My hyper extending hips, knees and ankles (my ankles are really bad) had been used and abused. I could barely walk and was refused help by a nurse to get up to go to the toilet. The same lovely woman told me to “shut up, there are other patients here!” because I was quietly crying in pain at 3am because post-surgery I’d had no pain relief. Bitch. I cannot wait to send in my letter of complaint.

I also can’t wait to see my useless GP and ask him if an urgent MRI and seeing a specialist physio is the standard treatment for anxiety. I still need him to refer me elsewhere to try and deal with the hormonal shit storm I’m dealing with but at least now I can comment that the rheumatology consultant commented that my hormone levels are those of someone who has had an ovary removed and I’m 27 with two ovaries so can they please try to get to the bottom of it?!

Very slowly getting there. Trying to process the fact that this won’t go away. I’ll never wake up and be “normal” me again. Tired and emotional and feeling physically like I’ve been tied to a rack and tortured – I guess I’ve been subconsciously protecting my joints more than I realised – it’s a shame that the only way to assess my condition involves doing things that cripple me for days but feel okay at the time!

Ren x

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4 thoughts on “Ehlers Danlos – Hypermobile Hell

  1. bowermanland says:

    Hello there, I’m an EDS person – I was diagnosed a long time ago. I just want to say 3 things: 1. Make sure your Vitamin D level and Iron levels are always OK. Anaemia makes EDS symptoms worse. Vitamin D – keep your level up and you’re less likely to get pains in your chest joints. If you’re taking a lot of painkillers try to get something from your Dr. to protect your stomach – like Omeprazole – you don’t want an ulcer. 2. An excellent ankle/foot specialist for EDS flat feet is Dr. Ron McCulloch – he’s based in London and is the best money I’ve spent in my life. I had to save to see him, but he got me walking after 10 years of limping and crutches – changed my life. Yeah, I have to wear trainers all the time, but I can walk with nearly no pain. 3. Learn to say ‘no’ to things that cause you pain/ make you tired. And that includes Physio. Good luck with it all. Truly. Sarah B.

    Liked by 1 person

    1. brokendownbody says:

      Hi Sarah! Thanks so much for taking the time to give me a heads up. It’s funny that you mention vitamin D, mine is constantly low, even with supplements. Though my iron levels seem to be okay. The rheumy did say out loud “oh, your vitamin D is low too…” so he at least knows about it.

      My issue with pain killers is that I’m one of the EDS people who is allergic to ALL THE DRUGS!! I’ve been on omeprazole twice a day for the last 2 years because my reflux is a nightmare. NSAIDs aren’t an option, even with ranitidine because it gives me migraines. Opioids do nothing for my pain, yet give me horrific reactions. So I have paracetamol. Nice, eh?

      It’s a relief to hear that other people struggle with physio. I’ve not had a great time with them either. The first one I saw privately and kept commenting on how bendy I am… But gave me a bunch of stretches that made it worse over time. Womp womp! The second one was adamant that I wasn’t hyper mobile purely because when the muscles seize up it’s physically too painful to pull my thumb right back, but it does it. Same for my knees… Grr!!

      I don’t think the bank of mum and dad would open to pay for me to see a doctor in London until I’ve at least tried the ones here but it’s so helpful to have a name of someone. Thank you so much 🙂

      R x

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      1. bowermanland says:

        Thank you for responding! Oh, the whole you’re so stretchy! You’re not stretchy enough! Thing. I have that too. Bendy knees, stiff elbows… and joints that get stiffer as you get older. It’s so much fun. So. Much. Fun. Vitamin D is so important: reduces the chance of Costochondritis, helps absorb nutrients from food. Take with Folic Acid to help it work. If you get free prescriptions get it via your GP – you’ll get a better quality of vitamin and you won’t have to pay £10 for them etc. I’m not allergic pain meds, I just have to take a lot of them. And thereby ration them. Ah! The joy of Acid Reflux! Sore throat, sore gums, sore teeth, random burning in the ole gut. I drink Gaviscon like water. In fact I’ve found Gaviscon Advance better than everything else. I can completely understand you’re not able to come to London for a doctor, but if you can find a Podiatrist in your area who is a specialist or has an interest in EDS or Hypermobility, go to see them. Getting the right support for your feet (orthoses, anti-pronation and shock absorbing shoes) is very important – it will help your feet, ankles, knees and hips, and make you less tired. It’s important that they know about EDS properly because it affects feet etc. in odd ways: small bones, floppy in the wrong places, tight in the wrong places… and they have the most bones in the body, so they’re complex already. Good luck and, to quote Churchill ‘Keep Buggering On’. x SB.

        Liked by 1 person

  2. brendaflippen says:

    Hi ! I am fairly new to your blogs.And I love them ! I and going back and reading your past entries. Some of them are hilariously sad and totally correct. Yes I am also in pain and tired to death most of the time. I started a blig, but have only .anaged one so far. By the time I read other people’s.es I am too exhausted to write mine. But that’s ok, we are all saying the same thing any way !! It sucks to be sick all the time ! And we just have to share that with someone !
    ((huggs))

    Liked by 1 person

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