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As it turns out I have been living with joint hypermobility my whole life despite my diagnosis being a recent one. This is a long wordy post guys so stick the kettle on and make a pot of tea, this one will take a while. I suppose before I launch into the details of the diagnosis that basically explained my entire life I should talk about what hypermobility is.

What is joint hypermobility spectrum disorder? Or HSD.

In simple terms it is being able to move your joints outside of their normal range. Despite the fact that the UK government are determined to return us to the Victorian era only with less investment in infrastructure we no longer have jobs in freakshows, so all my strange range of movement can offer me is huge amounts of pain. In our joints we have connective tissue mine is loose and stretchy so my joints are not supported in the way they should be. The range of pain and severity can range from person to person an day to day because of the nature of the disorder itself.

What are the symptoms of a joint hypermobility disorder?

Well this really does depend on a number of factors. You see there are a number of different diagnosis that come under the umbrella of hypermobility, including just being a bit hypermobile and not suffering any symptoms. For instance; Heritable Disorders of Connective Tissue (HDCT), Hypermobility Spectrum Disorder (HSD), which used to be thought by many experts as part of the same spectrum as  hypermobile Ehlers-Danlos syndrome (hEDS).

HDCT has its own variants with differing symptoms, for example; classical Ehlers-Danlos syndrome  has potentially more severe and differing symptoms from the hypermobile EDS. I am not a medical expert, and I am still researching on how to best manage my condition but if you want to read more about the variations of HDS I suggest you visit hypermobility.org.

As I have already noted that the symptoms differ for each person let’s just list what a few of those may be;

  • Chronic pain
  • Poor wound healing
  • Bladder and pelvic problems
  • Chronic fatigue
  • Soft stretchy skin
  • Frequent injuries, including dislocations, subluxations, sprains and microtraumas
  • Poor proprioception/clumsiness
  • Orthostatic Hypotension
  • Anxiety
  • Depression
  • Gastrointestinal Dysfunction

Wow well that is a pretty impressive list. Now that I have covered the basics I want to take you back to my diagnosis but I needed you to see the list of symptoms to help you understand why a diagnosis took so long.

unmade bed with coffee cup resting on it

My journey to a diagnosis.

When you think about the list of symptoms it is understandable why it took so damn long to get a diagnosis, understandable but still really frustrating from my perspective. Let me begin by saying that I am a huge fan of the NHS. They have literally saved my life more than once, so in no way am I bashing the NHS when I say this. The NHS is woefully underfunded and under resourced which means when you go to a GP, (in the UK your GP is your gateway to a specialist referral), you are entering a room with a professional who is stretched and has a really limited amount of time per patient as they are working their ass off to see as many people as possible. As a patient this means you go in with a laser focus and talk about the symptom that is causing you the most harm at the time, there simply is not time for much else. You think, as I did I will make a separate appointment to discuss the other issues.

The trouble with being a patient is that I don’t have years of medical training, go figure. When I turn up to a GP and complain about chronic pain I have no idea that it could be related to my  gastrointestinal issues or the fact that I bruise like a peach from simply leaning against a wooden table – true story. In addition to the symptoms that I did not know were connected there were aspects of my life that I did not know were symptoms. Fidgeting in bed, muscles fatigue, being clumsy, getting dizzy and fainting. I remember my husband saying to me a year into our relationship, “you are such a fainty person”, I thought that was normal.

Am I making it all up?

After many years of going to a GP with various issues that on the surface appeared unrelated, and rarely seeing the same one twice, I would start getting the look. We have all had it the look they give you to say are you exaggerating? Are you sure you are ill? Then after endless blood tests, vitamin D supplements, wrist splints, nerve conductivity tests (not a fun experience), more blood tests, being told it was because I was aging, because I had had a baby, because of stress, or fatigue and yet more blood tests. I believed the look. I started to think maybe they are right, maybe it is all in my head and I should stop complaining.

BUT I AM IN CONSTANT PAIN!

Yes it turns out being in constant pain, and that pain preventing you from sleeping and resting is a pretty good motivator to continue searching for answers. After years of appointments and tests and referrals I got a referral to a consultant rheumatologist. Little did I know at the time that this would be the game changer.

a moody image of a womans back sitting on a bed

As I sat in front of the consultant she was bending and twisting me and asking me lots of what I thought were strange questions. At one point I said to her, “oh I am not that bendy I always ache after yoga”. Her response was not bendy is not the issue and we will talk about yoga shortly”

Some of the questions seemed so strange; Do you fidget? How often do you burn yourself when cooking? Do you bruise easily? How often do you faint? Were you good at sports and games at school? Do you get constipated? Would you describe yourself as clumsy? Do have abdominal pain?

Now being aware of the symptoms those questions do not seem so left field but at the time I was under the impression that I was seeing a consultant to check if I had osteoarthritis, in that moment I was very confused by the questions.

Yoga will not save us all!

Okay look I am not attacking yoga, it is great but it turns out it is not a heal all. I am of Indian decent and live in hippy central, I cannot sneeze without it hitting a yoga practitioner so it made perfect sense that when I was suffering and getting nowhere with my doctors that I did something to try an improve my life. It turns out it was the worst thing I could do. I am a person who has soft stretchy connective tissue so doing an exercise that would encourage stretching causes damage as I would naturally move out of ‘the normal range’ hence the I ache after yoga comment. I am telling you this not to attack yoga and not to say stop exercising but if you have an issue with your body be very careful what you try as you can do yourself more damage in the process.

So what now? After the diagnosis?

Initially I had a few weeks elation. I finally knew what the issue was. I wanted to go back to every P.E teacher and rub their nose in my diagnosis, no I was trying my best I just cannot catch for shit because I am disabled!  I was not making it up there was a reason I was in constant pain. It felt good to know but after that initial elation I was still in constant pain.

There are things that I already do that help such as applying heat but I live in Northern Europe in a cold stone house so that does not help. Rest and sleep are hard when I feel fatigued because being in one position causes more pain for me.

The beginning of another long road.

I am now on a journey of discovery. I am researching what exercises I can do that will help strengthen my muscles, (they have to work hard to keep my joints in place), without putting strain on myself and causing more damage. I am looking to get a referral for a specialist occupational therapist and physio. Remember that the NHS is underfunded so I am doubtful these things will happen quickly, if at all. In addition to this I also have other chronic conditions and disabilities that I am managing and really there is a limit to how much time I can spend at the doctors begging.

Luckily there is more research online and We will probably end up paying for some private advice on exercise I can do at home to make my life better but I am really lucky that that is a possibility and people should not have health treatment be a means tested issue!

As I find out more and learn more about managing things I will share updates here as there is still not enough information out there. I am in my 40s do I used to moving out of my normal range and have two small children who require me to move in ways I probably shouldn’t. I can literally cause a subluxation from sitting on my haunches on the floor.

If you have read to the end I applaud you. If you are someone with knowledge to share on this please do so in the comments. Follow the links in this post if anything sounds familiar it may help you find your own answers.

If you have a health issue I impore you to keep trying for a diagnosis, be persitent.

Take good care everyone xo

December 19, 2019
March 9, 2020

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1 Comment

  1. Reply

    Nikky Matthews

    January 26, 2020

    Dear Nicolette
    I echo your sentiments about our NHS. I also became very ill 18 yrs ago, where after numerous Gp visits, and one Consultant appt a diagnosis was still alluding me. I was told it was all in my head. Eventually after agreeing to an assessment by a Mental Health Nurse, suprisingly she told me to “read my Gp notes” I forced the issue. A Specialist was found, and at my first visit I had my diagnosis. “M.E./Cfs with Fibromyalgia tendencies” I hope things continue to improve for you and anyone else out there on a similar journey currently….
    Even if the news is not good, once you know, you take back control, so very important. Life is not a rehearsal, and noone should live with regrets. X

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