May is Ehlers Danlos Syndrome awareness month (links to further information at the end of the post). Here is my attempt at raising awareness…
It’s been a while (November 2017) since I wrote about my chronic pain journey and explained a little about my symptoms. If you missed it and you’re interested then you can read about it HERE.
Are you back? Excellent. Since then it has been quite a journey. I have continued to experience the abdominal pain throughout, although it is intermittent and, I have now developed bowel and bladder issues (I’ll spare you the details) which make it difficult to decipher where the abdominal pain is coming from. As it has been almost six months and there have been some developments I thought I should write an update. I didn’t want to annoy everyone on social media so if you are easily bored then please leave now, I won’t be offended. Heck, I’m bored of it all myself. 😉
So, here goes… *takes a deep breath*
In December I slipped on some black ice and injured the joint of my sacrum/coccyx. In January, whilst putting the Christmas tree away I heard a loud pop and thought I had pulled a muscle in my shoulder only to wake the next morning with a lump on my collarbone at the joint near my neck which, I now know is called the sternoclavicular joint. My GP sent me to the emergency department, they suspected ligament damage and referred me to the out-patients fracture clinic and my GP referred me to Rheumatology with suspected hypermobility issues.
In February I was admitted to the pain clinic for corticosteroid injection in my right sacroiliac joint for pain relief and as a diagnostic tool to test for sacroiliitis. Since the injection, it is difficult to ascertain if my pain is any less, due to the pain in my sacrum joint. I would say it is slightly less painful but more importantly, I am able to stand for longer periods than previously, before the pain becomes unbearable.
In March I began physio on the clavicle swelling. Which certainly helped the tightened muscles in my neck that were in my opinion working hard to desperately try and realign the joint. The joint itself, however, remains swollen and appears to protrude and is more painful after exertion or upon waking from a deep sleep or after a long day typing – typically making it difficult to do my job.
I have always suffered from Menorrhagia (who knew all women didn’t bleed so much!) but throughout April I have had three menstrual cycles (very unusual for me and my very clockwork cycle). I began to feel very drained and I was even paler than I usually am. A visit to the GP and a blood test later showed I am actually quite anaemic.
Finally, at the end of April 2018, I saw the rheumatologist after referral by the GP in January. The rheumatologist carried out various tests (Beighton score, skin analysis, family and medical history, before diagnosing me with Ehlers Danlos Syndrome – Hypermobile type (hEDS).
So whilst I now have hEDS as a reason for why I have been labeled Bambi on ice my whole life, I still have all these individual injuries and ailments that need treating. The fracture clinic I was referred to from the emergency department has now ordered a CT scan to investigate further and the physiotherapist has withdrawn treatment for 8 weeks whilst awaiting the results of the scan. The pain clinic that is addressing my sacroiliitis has sent a follow-up appointment for June to look at the results of the corticosteroid injection. The rheumatologist is planning to see me in 6 months and has referred me to a specialist OT/PT to help with avoiding injuries etc. My GP has prescribed me 600mg of iron tablets per day to tackle the anaemia. I continue with my migraine meds as and when, which seem to be having less of an effect on the pain than they used to and I take Naproxen and Paracetamol for pain when it is unbearable. The painkillers barely touch the pain but I can’t take anything stronger like tramadol or even codeine because it brings on migraine. The tens machine can be helpful oh and numerous shaped hot water bottles!
Whilst I am learning to accept my new diagnosis and learning all about the condition (apparently I have poor proprioception and am not just terribly clumsy, hoorah!) I have gotten pretty good at learning to pace myself to avoid painful flare-ups. I now know if I walk the dogs for instance, that I can go 30 minutes before I have to sit down for 10 if, I want to be able to walk the 30 minutes back. If I walk the full 60 mins without a break I will be in so much pain I may have to lie down for some time before I can get up.
I know that sometimes on days when I feel great, I must force myself to rest even when I feel like I can do hour upon hour of physical activity or if not, I will be in tears that evening and most of the next day. It’s not just movement, standing in one position can be equally as problematic. One place that is particularly difficult is in Church, during worship. I desperately want to stand but I end up having to sit.
When I walk to school to pick up the kids if there isn’t a bench free I cringe because the walk home after standing still for ten minutes is excruciating. I felt so rude last week as an older lady approached the bench I was sat on and the person sat next to me (also older) moved for her. She must have thought I was so rude when she said ‘Thank you, my hips can’t stand for long’ and I butted in with ‘Neither can mine’.
Making dinner for my brood can be very difficult. In a family of 5 including additional needs and sensory issues, I’m often making various different dishes at the same time but pretty much stood in the kitchen for up to an hour. Flitting between being seated and standing too often, also causes flare-ups. My daughter once said to me ‘ Well, which is the problem, sitting or standing?’ ‘Both’ I replied. Sitting too long can cause severe bloating.
Mornings are my best time of day. Particularly, at the moment whilst I’m suffering from anaemia. The afternoons can be exhausting. Especially if the morning has been busy. Sometimes I have had little sleep at night due to pain and sometimes I sleep so well, especially after I have taken meds, that my clavicle subluxes and I wake up in agony until it manoeuvres itself back into place!
This is where I am up to at present. My Rheumatologist said just because you have hEDS does not mean we ignore all the other things going on. The diagnosis may give you a reason for symptoms/injuries etc but they all need to be treated separately in their own right, which is why I am seeing different specialists for different things. It does feel like a relief after being told by previous professionals that ‘sometimes there is nothing can be done’ and one who actually said ‘You have to accept that there is nothing physically wrong with your body’. I am a zebra and I have earned my stripes!
So now I’ve shared my journey with you I am sure you are all suitably bored but I promise, I’ll try and wait 6 months before I do it again haha.
As it is Ehlers Danlos Syndrome awareness month, I felt I owed it to the community of ‘Zebras’ that experience similar situations, pain, misdiagnosis and, judgment to write this post. I hope you have managed to make it to the end. Here are some helpful links about the condition. Please feel free to share this post and /or the links.
What is EDS and what are the different subtypes (eg hEDS)?
How to care for someone with EDS.
Get involved with The ED society