Today is Rare Diseases Day and I was delighted to be asked by Elizabeth on Despite Pain blog to share my story of having Cauda Equina Syndrome, alongside Tom Seaman who has Dystonia; Jenny Jones who has Familial Adenomatous Polyposis and Short Bowel Syndrome; and Zoe (aged 12) who has Chronic Recurrent Multifocal Osteomyelitis.
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Supporting People on Rare Disease Day – Despite Pain
It can take a lot of courage to discuss health issues with friends and family, but sometimes people put their own health in the public spotlight to help others.
When someone has a rare disease, there is often very little information and support, therefore, what these people do really matters so much to so many people. Sharing their stories matters too.
To read the rest of Despite Pain’s post and to read MY story please click here
The lowdown on Cauda Equina Syndrome
What does cauda equina mean? Well quite literally it is the horse’s tail and the bunch of nerves exiting the base of the spinal cord resemble a tail.
Cauda equina syndrome occurs when something invades the spinal space and compresses the cauda equina bundle of nerves. Most commonly this is a lumbar disc herniation (as in my case where the disc completely ruptures).
The defining symptoms for CES are
Sciatica (neurogenic pain) in the lower back and radiating down one/both legs
Bladder dysfunction usually leading to retention but occasionally to frequency, change in flow or incontinence
Altered perineal sensation or lack of feeling in the “undercarriage”!
Another week, another Monday – so that means one thing here at PainPals! Thank you so much for the feedback for this feature – I love to hear if you are enjoying it, but please do send other comments and suggestions for anything you would like to see!
There have been two major events in our house over the last week. The first was a long awaited appointment with a geneticist for the beautiful girl(BG). I can’t remember if I have mentioned before that we were struggling to find a consultant of any specialism who would accept the kids – just for a consultation. Unfortunately University College Hospital London Hypermobility/EDS unit no longer take referrals straight from a GP but instead it needs to be from another hospital – this has changed since my own diagnosis. My GP tried 2 rheumatologists – one recommended by UCLH – and both turned the requests down as the A level student (soon to be known as the politics student – we hope!!) and the BG were then under 18. So..we tried a local paediatrician and by the time the referral was churned out through the system, said A level student had turned 18! Then the children’s department decided that they really weren’t the right people to see the BG. Finally a fantastic lady in the hospital bookings found a genetics consultant from a London hospital who runs a satellite clinic monthly in our local hospital – and even better she specialises in children! Hurray.
Meanwhile the BG has become convinced that she is just making a fuss and doesn’t really need to have a confirmation of symptoms – her biggest concern was that using the Beighton scale she doesn’t have a high hypermobility rating. Hmmm…..mother here keeps explaining, as her shoulder clunks out of joint for the umpteenth time and she can hardly walk due to hip and knee pain, that there are so many other elements to consider here, particularly a very strong generational family history. The consultant was a lovely lady who listened to me, my history, the family history, the issues my boys have had and then to the BG herself. No she isn’t the most hypermobile person she has ever seen, but can she can already see that the BG has hips that are out of alignment and the dislocations are causing the same with her shoulders, so this immediately puts her back at risk of scoliosis and future problems. Ringing bells in my ears!!! More of this in another post…..
The second major event was our old dog Sam having a massive haircut with our fantastic groomer. Now I don’t wish to play down the wonderful care given to my girl, but Sam is about 15 (rescue dog so not entirely sure) and like his human mum, has a very dodgy lower back, hips and rear legs. He has YuMove pills daily and struggles to walk now, so getting into the doggy bath and being strapped in the harness before the Jacuzzi begins is no mean feat for an old boy! He came home a couple of hours later smelling wonderful, looking fab as always but absolutely shattered – doggie spoonie here.
Back to all of you and I have found yet more great inspiring blog posts by writers who I haven’t featured before. Whilst the majority have some sort of chronic illness background, the posts aren’t necessarily about health! Did you know that National Cheesecake Day approaches? Find out about it at This Auto Immune Life and about the design and sewing of beautiful clothes from a fellow zebra at Sew Pretty in Pink – I don’t even own a sewing machine!! I may be a bit late to the party, but have found the wonderful Youtube channel from the SleepySantosha website – Spoonie yoga…great! If you only have time to check out one piece of writing the poem by Bethany Kays is inspiring and heartbreaking in her quest to survive abuse. In fact I struggled to pick just 10 posts this week, so I am featuring 15 with a couple from some of my pals at the Chronic Illness Bloggers who have been here before.
Grab a cuppa, sit back and enjoy some great posts – and hopefully make some new online friends! The first post is a shout out award for all us spoonie bloggers!
This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines, hashimoto's and more. But in between all the chronic illnesses, I have a life...kind of. -Rachel Bob