You have been feeling sick for a very long time. Had many routine tests come back clear. Yet, you have been in pain for many months, maybe even years. You are still trying to navigate how to have a “functioning life” and your mental health may be affected as doctors label you a “hypochrondriac“, whilst your friends and family view you as lazy. All of this, has become frustrating as you want to escape your life of chronic pain, no answers and that sleeping beauty title.
Does any of this sound too familiar?
I want you to know first and foremost you are not alone. For many diagnosed with Ehlers Danlos Syndrome it was not an easy journey. EDS also shares some similar symptoms to other chronic illnesses, and lays the foundation for all my other illnesses. Many people ask me – how is that possible? Well, connective tissue is found in the entire body.
I want to make it clear I am not a medical professional.
I am just a real person, living everyday with this chronic disease, who did not give up until I found answers. Since, being diagnosed with Ehlers Danlos Syndrome Type 3 at 23 years old I have faced some serious infections and anaphylactic shocks from a co-morbid disorder Mast Cell Activation Disorder (MCAD). Doctors have told me, without my EDS diagnosis I would never of found out I had MCAD and could be dead.
I wrote this post to help others understand where and how to look for an Ehlers Danlos Syndrome diagnosis, so they can manage this incurable illness the best way they can.
1.Get an official diagnosis
If you think you have EDS, you will need to be seen by a specialist who can diagnose the condition. In the U.K, you will need a referral from your G.P to a rheumatologist. In the United States, you will want to be seen by someone known as a geneticist. These doctors will look at your medical history and ask you to perform tasks based on the Beighton scale.
NHS, London based consultant rheumatologists
- Dr Kazkaz – University College London Hospitals, Hypermobility Service
- Dr Mittal – University College London Hospitals, Hypermobility Servie
- Dr Hakim – The Wellington Hospital (on a 12 month sabbatical)
- Proffesor Grahame – Hypermobility Service
- Dr Hasson – Hypermobility Service
- Dr Wolman – University College London Hospital
Your G.P may refer you to a local rheumatologist. However, not all local rheumatologists will have the experience to diagnose you. In this case, the local rheumatologist can give you a territory referral to The Hypermobility Service, London or to see a consultant rheumatologist. If you suspect you have a complicated form of EDS, The Ehlers-Danlos Syndrome National Diagnostic Service, London can see you if you have a referral only from a consultant rheumatologist.
An appointment to be seen for EDS, can take many months to come through. If you want to go privately you may be able to get an appointment in as little as a week. However, you can expect to pay £300 for up to one hours consultation. The appointment will cost £300 regardless on how long you are there and whether you do or not receive an EDS diagnosis. Getting an official diagnosis can help you get more support in work, education and the Government and more support for your pain if you decide to get referred back to the NHS. Crowdfunding on websites like Go Fund Me and Just Giving are a great way to help raise £300 if you want to go privately.
Private London-based rheumatologists
- Dr Mittal
- Proffesor Grahame
2.Manage your pain
Keeping a diary will help you to identify your pain triggers and pain points over time. Using specific oils and cream with anti-inflammatory properties such as; mint, lavender, eucalyptus, ginger, tumeric and frankincense, should relieve some chronic inflammation. Ice and heat will also become your new best friend to regulate your body temperature. Buying an electric blanket and a hot water will help reduce pain in flare ups. If you want to find out more tips to relieve pain check out my post 23 Ehlers Danlos Syndrome Life Hacks.
3. Focus on getting stronger
The less you use your joints, the worse the pain will become. Physiotherapists are there to show you exercises to help your body gradually become stronger and to reduce your pain. It is not absolutely necessary that the physiotherapist specialises in Ehlers Danlos Syndrome, but it certainly helps. Stanmore hospital, runs a 3 week physiotherapy rehabilitation programme that your rheumatoligst can refer you to. Other exercises you can do outside of hospital which are suitable for people with EDS are; Pilates and Thai Chi.
4. Don’t ignore comorbidities symptoms
If you are diagnosed with Ehlers Danlos Syndrome – this may not be the end of your story. Many people with EDS, suffer with related conditions. Please, don’t ignore your symptoms, or it is likely you will remain very ill.
Common EDS comordbities are:
- Mast Cell Activation Disorder
- Interstitial Cytistis
- Postural Tachycardia Syndrome (POTS)
- Irritable Bowel Syndrome
- Gastrointestinal Reflux Disease
- Gum Disease
- Craniocervical instability
London-based doctors that have experience of EDS but specialise in other areas are:
- Proffesor Aziz – Neurogastroentrology – St Barts
- Proffesor Khullar – Urogynaecology – Imperial College Hospitals
- Dr Gall – Cardilogy / POTS – Kings College Hospita
5. Keep your mental health in check
Accepting you are going to be in pain for the rest of your life is a big deal. Online support groups or local EDS support groups can help you connect to others with Ehlers Danlos Syndrome. Some physiotherapy programmes, recognise the importance of your mental health and incorporate sessions focused on it.
Your mental health is just as important as your physical health.
Alternatively, you can get a set of free counselling sessions from the charity Mind. Remember there is no shame in needing extra support.
6. Stabilise your joints
Orthotists will tell you not to become reliant on mobility aids because they weaken your joints long-term. Although, if you need them to get around and protect yourself then wear them. You can buy medical supports online but, they can be costly. If you want to save money, you will need a referral from a G.P, rheumatologist or physiotherapist to orthotics who should assess you for insoles or free joint braces. However, again this appointment can take many months to arrive.
7. Listen to your gut
Many people with EDS have gut problems, because their stomachs are so stretchy. This can cause both spells of constipation and diarrhoea. Stool softeners and laxatives can help get your bowels moving, but you should try not to become reliant on them. If you feel nauseous and get hives when you eat and drink, there might be something more sinister going on. Whilst, seeking the advice of a doctor you might need to go for allergy testing at an immunology clinic and/or see a gastroenterologist. Dependent on your results, a doctor may suggest you cut certain foods out your diet, to live more comfortably.
Things to consider with caution…
Self-medicating with strong painkillers that are opioid based or Benzodiazepines (muscle relaxants) will help temporary reduce your pain but should only take when prescribed. Over time you will build up a high tolerance to these drugs which increases dependency and can lead to addiction. Medical cannabis is a popular choice for EDS, but is not currently legal in the U.K. However, even medical cannabis can have side effects on your mental health.
Yoga has many health benefits including; weight loss, breathing better, and reducing stress. EDS is not the same in every person, so for some they may be able to do Yoga and for others they may not. If you are extremely hypermobile – like me, then you may want to think twice about Yoga. This is because hyper extending your ligaments and joints can increase sublaxations and dislocations.
3. Support Networks
Support groups are great to relieve stress and talk to people who understand what you are going through to an extent. There are many Ehlers Danlos Support groups on Facebook, however please bear in mind many of these groups contain people who are and are not diagnosed with EDS. Therefore, you shouldn’t take someone who thinks you may EDS as a definitive diagnosis. Every person even with the same type of EDS symptoms are life will vary. If you are looking for meet-up support groups based in the U.K you can find them here.
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