Saturday, 18 August 2012

Living with Hypermobility and now PGP

I wanted to write about the symptoms of PGP and why this is worse for me because of hyper mobility.

I have lived with being extra flexible all my life, I have caused myself some injuries because of it, my ankles are in a terrible state, my wrists, my shoulders and hips and knees generally pop out of place and the tissue and muscle around them have been weakened and suffer immensely because of it.

The exact cause of hypermobility is unknown, though what professionals do say is the joint, they are hollower than those without hypermobility are and therefore make the joints more susceptible to coming out of place. In addition, there is extra collagen in the skin making everything more slack and loose - also giving joints more range than normal people. Over time living with hypermobility means the muscles around the joints become painful, the joints can become damaged, and it takes help to get the joint back into place.

My Experience

What initially happened to me was my ankle gave way, it became very swollen, and movement was limited. My GP sent me for an x-ray to see if it was broken and discovered it wasn't so I was sent to physio to regain muscle strength.

It was there I was asked to perform the party tricks which I have become accustomed to. Therefore, the physio could see if I fitted into her criteria. This caused immense pain and was a huge setback to me as the muscles around the joint became sore and weaker. When asked to move a joint further than the normal limit do not be tempted to do it. Once I saw this lady, it seemed to just be the start. I saw many other people who asked me to do the same thing. All they were able to offer me was a diagnosis which is not helpful, as this didn't indicate in anyway how to manage the problem. I had presumed all of my life that this was normal and I was the norm.

That was many years ago and I have suffered so much since then. I think the worst part is seeing so many different people who try to treat you with their standard form of treatment. They don't understand that their prescribed methods do not work.

Now I am pregnant. I will be 31 weeks pregnant on Monday. I have been given crutches by my physiotherapist and told my hips are out of alignment - which she knew about when I first came to her in May and did nothing about. She has let me get worse, allowed the condition to deteriorate. Every joint on my left side hurts, the muscles are all screaming with pain. Before it was doing any exercise that made things worse and now, it’s the very act of getting up and sitting doing nothing that is causing me pain.

I have been told that the Anterior Sacroiliac joint is the one that is causing the pain because of general pregnancy the joints in the hips relax to make way for the baby as she makes her exit. As the joints have moved apart, one has moved further than the other has - and I can feel this. The result is agony. Pure agony.

The physiotherapist I see is terrible; I fear I will never get the understanding I need now. I did once see a physiotherapist who seemed to understand and had proper exercises to help and not only that, put the joints back into place to help me.

I hope to god that my GP is taking me seriously, she has assured me that she will discuss the problems with my midwife and see what they come up with. They all seem to think that as soon as the baby is born the joints will go back to normal. NOT IN SOMEONE WITH HYPERMOBILITY MY FRIEND!

I need the joints put back into place before hand and get the right treatment afterwards to ensure they stay there. IO have read of people with my condition who have had to have their pelvis pinned back into place - requiring major surgery and countless issues because of it.

Women who have had prolapsed wombs and bladders and are completely misunderstood because of their condition. I fear this is the path that is meant for me. I hope not.

I have a massage today from a lady who has just been for more training on how to treat women in pregnancy. I will see my midwife again on Monday and ask for a referral to the physiotherapist I had before and urgently so the problem can be resolved now rather than allowing it to get worse as has been done.

Brigid Visser
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