This week is the Hypermobility Syndrome Association‘s #HMSAware week, raising awareness of the hypermobility syndromes (HMS). To support this, I’ve decided that each of this week’s posts will have a HMS theme running through them. To start off with, I thought I would share with you a week of my EDS Symptoms Diary, to give you an idea of what it is like to live with one a HMS. This is something I (try to) keep on a daily basis. It has been helpful in keeping track of the worsening of my joint pain during my medication reductions, as well as when asking for a referral to wheelchair services from my GP (more on that in Saturday’s post).
Please be aware that no two people are affected in the same way. The following diary is of my current situation with Ehlers-Danlos Syndrome, Hypermobility Type. I am not on much medication so that Dan & I can start trying for a baby in the very near future, so these symptoms aren’t my ‘norm’. Some people with EDS would class what you are about to read as a ‘good day’ for them in terms of pain & other symptoms. Other people would class it as one of their ‘bad days’, so please bear this in mind when reading. Because my condition fluctuates, I have chosen an average week, please be aware that sometimes my condition is worse than this & other times it is a bit better. As they are all intertwined, this diary also consists of a headache score (0-10, 0 being no pain & 10 being the worst pain imaginable), comments on my PoTS & anything else that might be relevant.
Monday
Headache Score (HAS): 8
PoTS: Palpitations & dizziness
EDS: Difficulty putting weight on left hip & ankle. Difficulty putting weight on right wrist & elbow, as well as left elbow. Pins & needles in feet.
Other: Numb right cheek after eating. Pain from throat to chest after swallowing & feels like there’s a lump in my throat. Palpitations worse after eating.
Tuesday
HAS: 8
PoTS: Palpitations & dizziness
EDS: Difficulty putting weight on left ankle & right shoulder. Back pain.
Other: Slept badly. Pain & difficulty swallowing in throat & down to chest area. Numb right cheek after eating. Palpitations worse after eating.
Wednesday
HAS: 10 – unable to move, sit up & speak.
PoTS: Palpitations & dizziness
EDS: Difficulty putting weight on left hip & ankle, as well as right hip & shoulder. Both legs shaky. Both feet turned outward & feet, knees & hips rolling outward on both sides. Fatigue
Other: Difficulty getting to sleep. Pain & difficulty swallowing from throat down to chest. Feels like there’s a lump in my throat. Palpitations worse after eating. Only able to eat soup & a couple of biscuits. Right cheek numb after eating.
Thursday
HAS: 9 – unable to think straight & form cohesive sentences.
PoTS: Dizziness & palpitations
EDS: Fatigue. Pain in left hip & ankle, down right leg & in hands. Pain in right shoulder & right hip. Unable to put weight on these joints. Fatigue. Both legs shaky. Left knee sublaxation.
Other: Pain & lump on swallowing. Numb right cheek after eating. Palpitations worse after eating. Slept badly. Only able to make it the 8 steps to the toilet & back to bed.
Friday
HAS: 8
PoTS: Dizziness & palpitations
EDS: Widespread pain & fatigue. Lax joints, particularly legs & arms – the best way to describe this is like you have rubber bands holding your joints together. When they feel particularly lax, it’s like the elastic bands have been over stretched so don’t hold the joints together as well. When it’s more prominent, it feels like my arms & legs are about to ‘fall out’. Right knee jolting. Shaking legs & arms. Only able to make it from bed to toilet & back. Fatigue.
Other: Pain & difficulty swallowing lasting 7 hours. Palpitations worse after eating. Breathing affected. Numb right cheek after eating. Painful shoulder, neck & jaw. Possibly connected to swallowing problems?
Saturday
HAS: 7
PoTS: Dizziness & palpitations
EDS: Difficulty putting weight on left hip. Both hips feel like the resistance when walking through water, with the addition of pain. Can’t lift legs more than 30 degrees. Legs shaking & giving way. Fatigue.
Other: Increased Amitriptyline to 50mg. Slept in the middle of the day. Unable to eat because swallowing water was so hard. Palpitations increased after drinking. Numbness in right cheek intermittently.
Sunday
HAS: 7
PoTS: Dizziness & palpitations
EDS: Difficulty walking due to pain, stiffness & fatigue.
Other: Pain & lump on swallowing, but slight improvement. Numb right cheek after eating. Slept badly. Just able to make it to the toilet & back to bed.
As you can imagine, the problems weight bearing are difficult, especially when more than one joint is involved. As a result of this, I am unable to get out of the house independently. I’m hoping this will change soon. I’ve written a post explaining more, which will be up on Saturday, so remember to check back for that!
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Thank you for sharing this and being open with your symptoms. I think it’s so important to share what we’re going through so that others don’t feel alone – or like we’re losing our minds.
I’m glad you liked it Kim! I completely agree, it’s so hard when you feel like you’re the only one & I’ve definitely had times when I feel like I’m going mad, so if I can help just one other person feel less like that this post was worth writing. Xx