My diagnosis journey with Hypermobile Ehlers-Danlos syndrome
Updated: May 4
From a very young age I would sprain my ankle every single morning whilst climbing down from the bunk bed, I ripped a tendon over 12 years ago which never healed, I bruise really easy, my wounds take longer to heal, and loads more. Overtime, things started getting worse, mainly pain wise, which is when I saw a rheumatologist. She couldn’t for the life of her figure out what was wrong with me and after a few months she said I have joint hyper mobility syndrome (JHS) and fibromyalgia. She then discharged me and my symptoms were only getting worse overall, which is when we went private and I was diagnosed with Hypermobile ehlers-Danlos syndrome.
What is HEDS?
Hypermobile Ehlers Danlos syndrome is a connective tissue disorder which can be genetic or the individual can be born with the 1st mutation.
There is no test to diagnose HEDS so doctors go by the new 2017 criteria to diagnose patients (which isn't that great). This includes, how stretchy the skin is, hernias, prolapses, musculoskeletal problems such as dislocations and subluxation, long term chronic pain, and many more. The doctor would also go over your medical history and look out for conditions/symptoms related to HEDS.
However, everyone experiences different symptoms and in different ways. Some may be in less pain but have a lot more frequent dislocations and others may just be very hypermobile, which is why treatment is different for all. There isn’t a set treatment plan for HEDS so its mainly about symptom management.
Since I’m not allowed any nsaids/opiods, I’m very limited to what I can take and, after factoring in my other conditions, I’m also limited in what I can do physically.
My medicines get altered from time to time due to side effects, interactions with other medicines, or because they no longer work. At the moment, from a pain perspective, I'm on a nerve blocker/muscle depressant, medical marijuana (CBD oil, THC oil and buds to vape - but I haven't restarted since last year for various reasons but am looking to start again) and a very strong painkiller for emergencies only. Other than this I rely on a hot water bottle, heat patches, voltarol gel and magnesium spray.
I started physiotherapy with someone who specialises in hyper-mobility EDS. Unfortunately the NHS does not offer this service and I needed to stop as it is quite expensive. I am now under a NHS hand therapist who is amazing as she specialises in shoulder and back issues and really understands that I work differently. Back in 2020 I started water aerobics which was fun and helpful for my pain but I had to stop due to bladder issues.
Some of my symptoms are: widespread chronic pain, stretchy skin, flexibility, subluxation of one knee, one shoulder and spinal discs, locking of hands/fingers, delayed healing, easy sprains and breakage and more, alongside autonomic issues, gastro issues, bladder issues and Mast cell activation syndrome. Due to the nature of my symptoms they are now considering the possibility of me having a different type of EDS (there are 13 types!).
Since EDS is multisystematic and causes many issues I am under a cardiologist, respiratory specialist, rheumatologist, physio, uro-gynaecologist, allergist, autonomic neurologist, endo specialist gynae and colorectal/gastroenterologist. Chronically ill/disabled patients are offered therapy in different forms such as CBT and a health psychologist, both of which I've done, but at the moment I don't have a therapist. It can be helpful to speak to someone about the daily struggles of your illness but it's not fair when we get thrown to therapy without anyone taking our physical health seriously.
EDS isn't rare but it's badly understood and not many health professionals know what it is so gaslighting is a big issue in the medical world. It can take years to get a definitive diagnoses and it is so important to find doctors who know about the condition and understand how it impacts patients. This is why, as the patient, we need to do our own research, but again, this can be tricky as google can get too serious too quick.
My top tips:
- Do your research and speak to your GP
- Get a referral to a rheumatologist who specialises in EDS
- Find other doctors who can help with specialist areas but also understand and know about EDS
- Work with your doctors to find the correct treatment plan
- Keep a symptom diary
- Try to find alternative pain relief methods or anything that may help you day to day; certain pillows, CBD, supplements etc