Marfan Syndrome Symptoms Diary

This week happens to be HMS (Hypermobility Syndromes) Awareness week alongside it also being Marfan Syndrome Awareness month so I thought this would be the perfect opportunity to share with you a little about what life is like living with a Hypermobility Syndrome and in particular the one I have, Marfan's. I took inspiration from Tania'a EDS Symptoms Diary blog post for this so do go over and have a read of hers as well, EDS is a similar condition but also different in many ways so it's worth reading.

On Monday the HMSA shared parts of my Marfan Syndrome story to help raise awareness and all throughout the week they'll be doing same for other conditions such as JHS, EDS-H etc so be sure to head over to their FB page to learn more about all the different hypermobility syndromes and how they can effect someone's life. Today as an extension of that I'm going to share with you my Marfan symptoms, aches and pains from the past 3 days. It's important to note that my experiences with this condition can be completely different to someone else's, we are all effected differently and this is just what 3 typically days look like for me. I haven't included everything or else we'd be here all day!


On Monday I woke up with a headache which is very common for me, I tend to overheat easily during the night and most days throughout the week I'll wake up with some kind of headache or migraine. That day is was bearable though and I took some paracetamol and it settled within a hour or two. I didn't really notice it all that much as I had severe pain (I rated it 7-8/10 most of the morning) in my upper back and neck. The car journey to my OT appointment was extremely painful and I could barely move my neck, shoulders and arms. I had some stomach pain when I got to the appointment which is pretty common for me, it's been put down to anxiety and doesn't seem to be any kind of serious problem so it is just something I'm learning to deal with whilst I learn to cope with my anxiety.

In the afternoon and evening my neck and back pain continued and only got slightly better thanks to plenty of rest. I'd been working a lot on my hand with the OT in the morning so I had pain in my right hand and wrist that gradually got worse throughout the day and then ended up waking me several times during the night. I had a few heart palpitations in the evening that day and I was absolutely exhausted despite only doing one main activity during the day, I ended up falling asleep at about 9pm and sleeping for 13 hours.


I woke up with the same wrist and hand pain that had started the day before which was no surprise to me but it was starting to become pretty unbearable and even holding my phone became a difficult task. Tuesday was hair washing day which always wipes me out and leaves me in more pain but it has to be done and I do feel better mentally after doing it. I rested for a long while afterwards especially as my right knee was being very hypermobile, shifting around all over the place. Luckily it doesn't tend to dislocate, I experience a lot of subluxations with that knee though.

During the afternoon the wrist/hand pain stayed the same and although my knee had stopped moving around so much it was starting to become very painful. I sat at my desk and did some blogging for a little bit which made my shoulders hurt and all the pain combined meant my brain fog started to get worse and I was making  a lot mistakes which is my warning sign to stop and rest. I also had my usual lower back pain as I had been sitting up however resting wasn't improving this and it continued into the evening and night.


Again I woke up with that very familiar wrist and hand pain and within 30 minutes of being awake I also managed to dislocate 2 toes. Putting my toes back into place puts a lot of pressure on my hips as I have to bend down so that made my left hip pain flare up and also made my soft tissue/scar pain start up on my operated hip.

My brother took me down to the post office so I could send something and I used my wheelchair which took some pressure off my body but sitting in the same position for 45 minutes left me feeling very stiff and also very tired so I made sure to rest after that but also to keep moving around to loosen up my joints and back a little. I'm typing this up on Wednesday so that's as far as this diary is going to go but hopefully I'll have a comfortable evening and a good nights sleep!

Having so many different pain and problems at once can be frustrating and annoying but I'm learning to deal with it more and more!

No comments:

Post a Comment