I Think I have EDS. What Happens Next? The Ehlers Danlos Series

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.

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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 hypermobilty based 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 do 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.

Buy a handmade EDS awareness keyring 

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50% profit goes to Ehlers Danlos Support U.K

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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
  • Endometriosis
  • Postural Tachycardia Syndrome (POTS)
  • Irritable Bowel Syndrome
  • Gastrointestinal Reflux Disease
  • Gastropesis
  • Anxiety
  • Insomnia
  • 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.

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Things to consider with caution…

1. Self-medicating

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.

2. Yoga

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. 


Relevant Posts

16 Things A Doctor Won’t Tell You When You are First Diagnosed With EDS

15 Things Medical Zebras have Learnt to Love about their Incurable Illness

Misfortunate: A Poem about Ehlers Danlos Syndrome

23 Ehlers Danlos Syndrome Life Hacks 

My Invisible Illness ft Tramadol


Relevant Guest Posts 

Through the Nutritionists’ Eyes

Hypermobilty Ehlers Danlos Syndrome and Me – Ansley 


Sharing is Caring 

I would love if you shared this post to help undiagnosed people who suspect EDS reach a diagnosis.


Have your Say 

Do you suspect EDS or have been officially diagnosed?  If so – I would love to hear your experience below. 


Invisible Illness Awareness Jewellery 

Raise awareness of your chronic illness by buying an invisible illness awareness bracelet. 50% profit goes to Ehlers Danlos Support U.K

https://www.etsy.com/uk/listing/706722712/eds-awareness-bracelet-ehlers-danlos?ref=shop_home_active_1&frs=1

Until recently, I have sold bracelets offline. If you like a design that is not listed on Etsy please email me at morganisabellashaw14@outlook.com

 

 

 

 

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9 Comments

  1. This is SUCH a useful post! “However, not all local rheumatologists will have the experience to diagnose you” – you are so right about that. I saw a different rheumie last week because I have ‘undifferentiated connective tissue disease’ and I’m really not sure of my diagnosis, especially as a surgeon enquired whether I may have a form of EDS. It was like speaking to a wet lettuce, he seemed to know nothing at all and the whole visit was an utter waste of time. Empowering yourself as a patient is so important.
    Caz xx

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    1. Hi Caz, thank you for reading and leaving a message. Sorry to hear about your experience the only good thing about a local rheumie is they should be able to refer you on to a consultant rheumatologist. The hypermobile form of EDS has an unknown genetic marker and is confirmed with a medical history , examination and Beighton Scale. The other forms of EDS can be done with genetic testing. People that don’t score enough points on the Beighton Scale are time they have hypermobilty spectrum disorder as opposed to EDS (although some doctors say they are the same and some don’t) as some patients with HSD can still have severe complications. Have you been tested for auto immune diseases like rheumatoid arthritis ? Although, I have heard some people with EDS are stiff as opposed to hypermobile to make things even more confusing. I have written other blog posts on EDS and even if you don’t have it I hope it gets riled out! Sending you hugs xx

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  2. I’m still struggling with number 1. My doctor keeps pulling the “it’s genetic and no one in your family has it” and I keep trying to say that comments like that is the reason many of my family members who have chronic pain issues and other symptoms never got diagnosed let alone checked for EDS

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  3. I had never heard of it. I was at a neuro-psychiatrist that my pain management dr sent me to. He was talking with me and I bend my thumb back almost all the way. He stopped Mid sentence and started pulling my sking and bending my joints. He diagnosed me then, and sent me to get genetic testing

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