My diagnosis journey with Hypermobile Ehlers-Danlos syndrome ?
From a very young age I would sprain my ankle every single morning when I was climbing down from the bunk bed, I ripped a tendon over 10 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 and can be genetic or the individual can be born with the 1st mutation.
There is not test to diagnose HEDS and so doctors go by the new 2017 criteria to diagnose patients. This includes, how stretchy the skin is, hernias, prolapses, musculoskeletal problems such as dislocations and subluxation and 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 vica versa. which is why treatment is different for all. There isn’t a set treatment plan for HEDS and so its mainly about symptom management.
For me, 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.
I have also started physiotherapy with someone who specialises in hyper-mobility eds physiotherapy. Unfortunately the NHS does not offer this service. I was also under hand therapy for hyper-mobility, which ended as the clinic has closed.
My main symptoms are: widespread chronic pain, stretchy skin, flexibility, subluxation of left knee, late healing, brushing, yellow skin?, easy sprains and damages, flat feet with heel issues alongside autonomic issues, gastro issues, bladder issues, Mast cell activation syndrome.
Currently I’m on 2 medications for the pain and not doing anything physically because of some bladder issues, and still do see a podiatrist.
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. There is a major lack of knowledge when it comes to EDS; the majority of doctors have no clue about these conditions. This is why, as the patient, we need to do our own research.
My top tips:
- Do your research and speak to your GP
- Get a referral to a rheumatologist
- If your rheumatologist has no knowledge of EDS, ask for someone who does or find a EDS specialist
- Work with your doctor to find the correct treatment plan
- Remember you may need to see multiple specialists, depending on how your condition impacts you. You should refer through the main specialist to maybe, physio, podiatry, hand therapy, occupational therapy etc
- 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
- Check the Ehlers-Danlos website