Skip to main content

Musculoskeletal Therapist Update..

I don't know if I'll be able to finish this whole blog in one go as I'm in pain with my spinal hardware right now and all my joints have flared up, but I want to make a start now whilst today's appointment is still fresh in my mind. I'm typing this up on my phone from the comfort of my bed which is where I've been all evening after spending too long at the hospital. I went to see a Muscluskeletal Therapist who I was referred to earlier this year. He started by taking notes of all my health conditions and the symptoms, which took almost an hour in itself and then I had to have a physical examination. So that’s why I was there for so long. His job was to work out which route to go down in terms of exercise based on what I can and can’t do. I told him all about my limitations due to my spinal hardware and the protrusion of some screws, and I explained the problems I have with my joints due to my connective tissue disorder, Marfan syndrome.

Image found on Pixels.
Whilst he was assessing my joints and range of movement, I began to suffer from a POTS (Postural Orthostatic Tachycardia Syndrome) attack which is a secondary condition of Marfan syndrome and causes palpitations and dizziness. It was brought on by so much moving around during my physical examination so we had to bring things to a halt whilst I sat on the edge of the bed waiting for it to pass. I knew it was going to happen because I could feel myself getting lightheaded and sweaty, but I stupidly carried on and tried to persevere with the therapists assessment so that I didn’t have to disappoint him by saying no, when in actual fact I should’ve just said “sorry, my body isn’t capable of doing this much.“ Instead I pushed myself and ended up over doing it but luckily the Musculoskeletal Therapist understood and we gave up on the examination for the time being.

I sat in a chair next to my Mum (who was with me) to fully recover and the therapist talked to us about Pacing oneself, which was very fitting given what I had just done. He said he thought it might be wise to teach me how to practice Pacing at my next appointment. I know a little bit about Pacing but I have never properly practiced it. So I'm looking forward to that. He went on to tell me that my joint problems and chronic pain can't be cured because unfortunately Connective Tissue isn’t fixable, but if it’s done in the right way, we could try building up muscle strength which may enable me to cope with everything better. Apparently if the muscles are strong, my body might not feel as much pain. I don’t know if there’s any truth in that but I’ve agreed to give it a try. So once he’s taught me the rules of pacing, we’ll move on to building up muscle strength and see how that goes. I don’t know if it’ll go the way it’s supposed to, but one thing I do know is that I have a long journey ahead with the musculoskeletal therapist.


Popular posts from this blog

I'm just gonna start by being really honest with you all. This year has been rough for me. Really rough. My Marfan related health problems have taken their toll on me and I feel physically exhausted. I feel emotionally exhausted too, but I don't like openly admitting that. I don't know why, I guess it makes me feel ashamed as I sound weak. I don't want sympathy, I just want to express myself. If you've followed me for a while, then you'll know that I already have various medical ailments mostly as a result of Marfan syndrome. I live with chronic pain, PoTs, a complete bowel prolapse, and numerous other problematic issues. I was just about managing to cope with all that but then Marfan syndrome started affecting my gastrointestinal system, and I've lost too much weight. I've been slim for a few years now, but not this slim. I'm just about sitting at 6st at the moment, which is far too thin for my height. I've been referred to the dieteics team and

The Daily Realities..

Over the last few years, I've been very open on Blogger about my life with Marfan syndrome and numerous health conditions, but I haven't been quite as forthcoming with those around me because if I'm to be honest, I struggle to fully express the significant impact that chronic illness/health conditions have on my day to day life. I don't look like someone with chronic illnesses. I don't use a wheelchair, a stick or any disability aids, so I'm afraid of telling some people in case they think I'm over dramatising it. But that is far from the truth. I've lived with chronic pain for a long time now, gradually building up and becoming more widespread over the years. I've learnt to become good at pushing my unpleasant physical sensations aside to get on with my every day life though, so no one would ever guess it. No one would know (unless you are my Mother) that on a typical day I experience several different types of pain and discomfort throughout my body

The Critique of my Marfan Physique.

Written in response to the unwelcome yet frequently made remarks on her strikingly slender physique, Lucy’s piece will resonate with many Marfan folk whose slim stature is also the recipient of such unwarranted attention.   Hey guys, here's a blog written by me, published by Marfan Trust. The Critique of my Marfan Physique.