Wednesday, 8 January 2014

Some answers at last :)

Thought I would do an update on my level of crippledom; it has been quite a while since my last post. 

After constantly being ignored and not taken seriously by my GP, I decided to take matters into my own hands and booked myself an appointment at the Hypermobility Unit in London. I don't have private medical insurance, so it was daunting knowing it might cost quite a bit of money... But I can honestly say it was totally worth every single penny. 

A lot of questions about my health, childhood and current situation, and followed by a very thorough physical examination gave me a lot of answers. 

I 100% have the hypermobility type of Ehlers-Danlos (type III) and I'm now completely aware of which parts of me are hypermobile. So here's the list: neck, elbows, wrists, fingers, both hips (in 1 out of 2 directions), knees, ankles and toes. It probably would've been quicker to say that I'm not hypermobile in my shoulders, 1 direction of my hips and my spine! After bending & cracking various different ways, my back muscles immediately went into spasm; more proof that something is very wrong with my body!

I've got to be sent for an MRI scan because my spine is curved, which the professor thinks is due to a trauma or injury. I don't remember ever injuring it, but he said that because I'm so bendy and fragile, I could have quite easily done it without realising. He explained that the vertebrae in my lower back is out of place so it's quite possible that that is a huge factor in my back pain. He said that an MRI will tell me more, but it's possible that keyhole surgery may be needed to correct it. 

Another interesting thing about having this issue - it is probably the cause of all of my UTI/kidney and stomach problems. The vertebrae could be pressing a nerve, which has caused my internal organs not to function as efficiently as they should. Along with the occasional bouts of sciatica. The headaches I get are also caused by my neck being so bendy. 

So after being told by my GP that I should: get bed rest, take tramadol & muscle relaxants and do gentle exercise like yoga... The top rheumatologist for my condition has said: MRI, possible back surgery, see a specialist pain management team (due to the nature of my job, strong painkillers are not allowed), physio at a specialist hypermobility clinic, EDS gastro specialist for my stomach, keep active, keep lifting weights to make my muscles as STRONG as possible. I can honestly say that I was elated to meet someone who not only took me seriously, but asked me how I had managed to cope with this for so long without any help from doctors. He said that he heard similar things from every patient, that their GP just fobs them off continuously. He said I did the right thing by taking matters into my hands and was very glad that I'd done it. 

So a letter from the Professor should be on its way to my GP shortly, will be interesting to find out how they'll be with me after being told exactly how to do their job. I'm quite keen to find out :) 

2 other weird points - he said I had very smooth skin which is unusually stretchy and immediately spotted the chicken pox scar on my forehead which I had tried to disguise with make up. Apparently it's common for people with EDS to have scars that are deep, or haven't healed in an aesthetically pleasing way. So that explains my god-awful skin!

The point of this blog is this: if you have a condition that is getting you down, or you are constantly getting fobbed off by your GP; do your research and book your own specialist appointment! I am in no way rich or even what you'd call 'comfortable' so this appointment was a huge expense I could have done without. But I have a credit card, and I can work overtime to pay it off - health comes first and I truly believe that I made an AMAZING decision doing this. It's so worth the money to get the help you need, maybe now I can start working toward enjoying some pain free days. To have someone give you a straight answer and tell you what you need to do is very satisfying. I feel good today. 

I am so unbelievably lucky that I have the best rheumatologist in the country only 45-60 minutes away from my house by train. And I'm also super lucky to have an amazingly strong husband and personal trainer to pick me up when I can't move and work me hard in the gym to help fix my problems. 

Seriously, people - gym membership & a private appointment with a specialist is a small price to pay to get your health back on track. And there's something I would've laughed at a few years ago! 

Questions? Feel free to message me! 


  1. Hi!

    I have been told by 2 PT's that I have hypermobile joints. I have pain in knee, elbow, shoulder and click/grinding in those joints and also hips, ankle, neck, wrists. I don't satisfy any of the Breighton's criteria and it is quite confusing. My current physio doesn't answer straightforward and I am very sure he concerned more abt my money than rehab.

    After too much juggling from one physio to another, I have decided to stop physical therapy and start strengthening at gym. I was in doubt but your blog helped strengthen my conviction.

    I also have this curve in my spine but I strongly feel its due to my favouring one side while practising Taekwondo long back. Back then I had no issues at all. My joints started acting up one by one since August last year.

    I also have a hormonal condition which may have a role to play....

    Your blog is such a support and strength for people who are struggling to help themselves.

    Will keep coming back to your blog....

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  3. first i would like to thank u for sharing alot of useful stuff in ur blog , keep the great job up :) , i wanted to ask if hyper-mobile person can do bodybuilding ? or maybe running ? is there's any to do and dont do list when it come to running ?

  4. Hi,
    thanks for this. I myself have been to the unit and also had physio with them. Hypermobility EDS too. They helped but not as much as I hoped. I suggest you also see Dr Quasim. He is a neurogastroeneterologist and helped me a lot with the stomach side of it...
    I still struggle with exercise though. Currently have a shoulder that keeps popping out. A trapped nerve in the elbow and some smaller injuries. I am looking for a personal trainer who understands that we are different. I am based in west london, so perhaps you know anyone? The problem is that somebody who does not know our condition will just cause damage... whether trainer or physio.
    Would appreciate your feedback.