My Experience: Treatments to Manage Ehlers-Danlos Syndrome

I’ve had quite a few messages on Instagram asking me how I manage my hypermobile Ehlers-Danlos syndrome, so I thought to give details about my processes in a post – here it is…

Let’s begin with a clarification…

There is no cure for Ehlers-Danlos syndrome – no matter which of the 14 types you have. And, with EDS being a whole body issue, everyone’s problems will vary and so will their comorbidities. As I have only experienced my own symptoms and know of them better, I’ll be sharing what all I do to help myself.

If you prefer to watch a video version of this then you can here, otherwise scroll through for the rest of this post, O’ and if you wish to, there is a video on the physiotherapy and exercises I do for EDS too… so scroll ahead for that in case you wish to:

Nothing I say here (or anywhere) substitutes the advice of a medical professional – I am a patient just sharing my experiences and not giving out any medical advice.

How I Manage My Hypermobile Ehlers-Danlos Syndrome

Managing a medical condition happens on various levels, which includes the physical things we do everyday for it and also the mentally stimulating and calming activities too.

I’m going to explain both, but I’m consciously choosing not to speak of medications because I look to avoid pain killers as much possible as they tend to disturb my sleep pattern, leave me very groggy and slower than usual, making it more of an effort for me to lift myself mentally and physically.

But, when I do, when I really have to, I only take pain killers advised by my doctor because I have a tendency to react to various medicines so I have to be careful.

So let’s get to it then…

This how I manage my hypermobile Ehlers-Danlos syndrome – this will obviously be different for everyone – please always speak to your doctor before making any changes to your EDS management program.

Relevant Reading:

• My Journey: Being Diagnosed with Ehlers-Danlos Syndrome

Braces & Taping

Even before I was diagnosed with hypermobile Ehlers-Danlos syndrome, I was bandaging up areas of pain, especially my knees and wrist, but it was only after other areas of my body got worse did I take the idea of using braces more seriously – well I needed to if I wanted to improve my stability and ability to move and work (and it paid off).

I use braces for my knees, legs, ankles and arm, along with wrist and fingers splints – these braces help reduce the hyper-extension my joints get involved in and very importantly, it gives me much needed compression.

The next is – kinesiology taping which is also done to help improve blood flow, provide compression 24 hours of the day – days on end and to give me stability – all this is particularly helpful when I have trouble standing at night needing to go to the washroom because I look to avoid braces at night so taping helps there too, plus it’s not bulky either.

To know what I’m talking about, I wrote a post about it, which also has a video that explains the taping process I go through. Here’s the link:

• My Experience: Using Kinesiology Taping for Ehlers-Danlos Syndrome (with video)

 

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A post shared by Shruti Chopra (@footprintsnoboundaries) on Jan 21, 2020 at 6:24am PST

Mouth Guard

I have quite a lot of issues with teeth grinding, migraines and I also have temporomandibular disorder (TMJ), which to explain briefly and crudely – I have pain in my jaw and trouble moving it too.

To help with the teeth grinding, or bruxism as it’s called, I use a mouth guard, which other than the migraines has also helped reduce painful episodes with my jaw (TMJ) caused by EDS.

To know more, please read this:

• How A Mouth Guard Has Almost Cured My Migraine

Walking Sticks

For a year I needed to use a wheelchair especially in hospitals, whereas, otherwise I’d be home and in bed requiring assistance to and from the bathroom.

Soon I had to start use walking sticks at home if I was to help my balance and eventually now, it’s what I use when I step out as well.

In terms of how my walking sticks help me – they give me stability, reduce the pressure I put on my legs especially when I have to use a staircase and most importantly, they provide me with balance when my legs are feeling weak and when I have a dizzy spell.

 

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A post shared by Shruti Chopra (@footprintsnoboundaries) on Oct 24, 2019 at 7:45am PDT

Physiotherapy & Exercise

Physiotherapy and exercising go together – one cannot be effective without the other, so to explain better, I have broken down the forms of therapies and exercises I do.

A video version of my physiotherapy and exercise for EDS. If you prefer to read the details instead then just scroll on below:

Manual Therapy

Physiotherapy techniques are carried out in different ways for different people all based on what your body can tolerate and most importantly, what helps you.

My physiotherapy sessions comprise of manual therapy which help to release muscle tightness, pain and helps improve mobility of that area. This is not restricted to just one part of my body, but any area can require help and this method helps with that.

Important – Please Note: I do not go through any manual therapy on my shins and ankles as they are an extremely problematic area for me and touching it aggravates it so please be careful on having manual therapy in areas you’re extremely sensitive in

Taping

I spoke of taping right at the beginning of my list, and just wished to add here that this process is carried out by my physiotherapist at the end of each of my sessions especially on areas that have gone through the manual therapy and of course my shin and ankles.

Aqua Therapy

Quite simply, aqua therapy is exercising in water.

So you stand in an enclosed cubicle that has a treadmill in it. This cubicle fills up with warm water – or water based on temperature that works best for you. I prefer warm water which relaxes the muscles and reduces the possibility of spasms while I exercise.

During these exercises in water I find my endurance improving, so does my range of motion, joint stability and most importantly, for anyone trying this out, you’d only feel 20% of your body weight – that way you’re not adding your body load to your joints and are able to carry out your exercises for longer.

The same movements outside the water would tire me out, cause me pain and set me back a week at a time so aqua therapy has been an important addition.

Resistance Training

Resistance training is done through the use of resistance bands.

These bands are mainly used for strength training and stretching, but more specifically for me, I use these bands for upper body strength.

My physiotherapist worked out my problem areas and I was given a specific exercise program to help improve muscle strength in those areas. We worked out what particular exercises do not aggravate my problem areas – we review these exercises regularly to make sure I am on track.

Very importantly, I feel when an expert teaches you about form and positioning while using this band, you’re giving yourself a better chance to improve your strength and a lesser chance of injuring yourself when these exercises are done at home.

Pilates & Pelvic Floor Therapy

My physiotherapist has set out further exercises to help strengthen my core muscles which in term help reduce the load on my back and legs.

These exercises are a mix of pilates and pelvic floor therapy – since I also have endometriosis, these exercises are extremely important in tackling that area of pain as well.

I also follow Jeannie Di Bon’s pilates videos – I only do what does not aggravate my legs. But most importantly, Jeannie has hypermobile-EDS herself and says this on her website:

“I have hEDS, and as a previous chronic pain sufferer I understand what it is like to live with pain and be fearful of movement. Through study, research and practical experience, I created my own method – the Integral Movement Method – to rehabilitate the body from pain.”

After reading her book, Hypermobility Without Tears, I began to really believe in the possibility that my pain can reduce as well, so I’d recommend checking out her books and videos.

Stretching

When you’re hypermobile, you stretch easily and further than you should, but what also ends up happening, in not wanting to over stretch and believing that we’re always well stretched, we don’t end up stretching at all creating unnecessary pain and tightness – well, that’s what happened to me.

My physio’s manual therapy would help, but when I needed urgent help at home, I didn’t know what to do.

I felt that regular gentle stretching should be done.

I make sure that I am very aware of how much I stretch whenever I do stretch any area of my body – I watch how far my range is going so that I do not over do it. This in general has been very helpful in reducing spasms especially in my lower back.

Walking

On days when I feel I can’t do resistance training, or pilates – or in fact any form of exercise, I put on some music and walk at home, whether it’s five minutes or 10, I get some movement in.

Music helps to make sure I don’t look at the time and get through those 5-10 minutes quite easily. Also, very importantly, I don’t set a pace for myself, I move in the speed most comfortable for my body that day – the idea is to just move.

If there are days I can’t do anything – I don’t and I’m good with accepting that.

Diet for Ehlers-Danlos Syndrome

I think whenever and wherever I get the chance to, I speak about the importance of how adopting a gluten free and an anti-inflammatory diet has made me feel lighter, improved my breathing and my pain levels.

I wrote a detailed post about this which breaks down all my diet changes and the reasoning behind it. I would suggest reading this if you’re keen on making this lifestyle change.

I obviously made these changes after consulting a nutritionist – I would always recommend you do the same.

Here’s the link:

• My Diet for Ehlers-Danlos Syndrome

 

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A post shared by Shruti Chopra (@footprintsnoboundaries) on Dec 13, 2019 at 7:07am PST

Massage

Since my worst EDS flare-up in 2015 which lead to the EDS diagnosis, I’ve struggled with getting massages and even touching the skin of my legs. Now, with various other areas of my body hurting further, it’s next to impossible to allow anyone to give me a massage, but I believe some areas need help with blood circulation such as my fingers, wrists and arms.

I apply some olive or almond oil in my palms and gently – very gently massage these areas for a good 3 to 5 minutes. I then wash the areas with warm water and pat dry.

This process definitely helps improve blood circulation and relaxes the muscles too.

Relevant Reading:

• My Night-Time Routine While Having a Chronic Illness

Rest

Very underrated but extremely important – rest.

We’re in a world where we feel we should always be doing something and rest is seen as a waste of time, but when dealing with a chronic condition rest is most vital to help our body recuperate.

By pushing ourselves we run a higher risk of causing more damage and inviting painful flareups, so for me, rest is valuable and I take time out for it.

Hot Water Bottle

I find hot water bottles/bags to be absolutely heavenly!

Cold compression increases my flareups leading to stiffness so they’re definitely not for me, but heat… heat calms my pains and I don’t know what else to say about them other than I cannot function without warm compression.

It keeps me going.

Epsom Salt Soaks

Epsom salt in general is supposed to be extremely beneficial for stabilising moods, releasing stress, but for me it helps to relax my leg muscles.

I don’t have a bathtub, so to help my legs, some evenings, I fill up a bucket with warm water and put a handful of epsom salt in that warm water. I sit on a bath stool and put my legs in the bucket for 10 to 15 minutes.

Within minutes my leg muscles start to relax, reducing my pain, helping me to sleep better that night.

Mental Health

Even the physical things I do, like working on my diet, going for physiotherapy, exercising, using a hot water bottle… everything I do plays a role in improving my mental health because in each of these things, a lot of love, care and effort goes in – it shows the intention and respect I have towards my body especially because of the troubles it faces.

But in addition to everything mentioned, I do the following things to help my mental health further.

Meditation

Meditation is the time where I attempt to empty my thoughts and connect with nothing. No conversations with myself – I don’t entertain any thoughts, instead I watch them come and go.

But before that, I take the time out to breathe and do a yogic practice called ‘anulom vilom‘ – it’s also known as alternate nostril breathing and helps to improve my fluctuating blood pressure caused by Ehler-Danlos syndrome and dysautonomia. Please do not try this without consulting your doctor.

Together, focussed breathing and meditation gives me peace of mind and reduces mental fatigue which is very easy to experience when having to constantly meet doctors or even when I’m facing tough days.

Here is how you can start off with anulom-vilom – Melissa has simplified it for many of us trying to learn new things and experience brain fog:

Self Care

For me, again, everything mentioned in this post is all a form of self-care but to be more specific, I take time out to take care of my hair and skin whenever I can – I don’t force myself on days I do not have the energy.

I feel my hair and skin goes through a rough grind with all the pain and medication I have, so simple things like being well hydrated, applying a face mask, scrubbing the skin and a head massage all help in reducing the impact my health has on it.

Being Organised – Reducing Clutter – Removing Dust

Living in a clean organised space helps me feel lighter.

Too many things all over the place makes me feel overwhelmed and disturbs me. And it’s not just about stuff that I can see, it’s also about what’s in the cupboard so I prefer to not just reduce clutter or live dust free but I also prefer to slowly reduce the unnecessary and give things off to charity – this adds simplicity to my life.

But on a practical weekly level, there are three essential things I keep organised:

1. I meal prep so I keep food organised
2. I keep my medical files organised
3. My medication is in order and I put these in pill boxes every week for the week ahead.

Listening to Music

I love music and I’m sure many of you do too.

I love singing loudly whenever I can and just hearing music based on how I’m feeling at that moment. It’s a great stress reliever and helps me switch off from everything and everyone.

A must for me to maintain my mental health.

Work

Lastly and one of the toughest things for any spoonie to deal with is professional inconsistencies and that’s my struggle too.

I am a tarot reader but in the last few years as my health deteriorated so did my ability to work. It wasn’t great before and then it just got worse. It’s only been since January 2020, when I jumped into writing for this website of mine with the desire to build awareness, which I believe is my purpose.

The sense of satisfaction is immense and makes me feel like I’m not going through all these issues for no reason – hopefully I’m able to help someone through this website and the podcast I do.

In case you’re wondering and wish to know how to find your purpose – here’s what I would suggest and also how it unfolded for me:

• Podcast Ep. 6: What Do I Do With My Life? What’s My Purpose?
• Podcast Ep. 12: Blogging When You Don’t Like Writing & Have a Chronic Illness

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So that’s the end of my list in how I manage my Ehlers-Danlos syndrome. I would love to know how you manage your EDS or any other medical condition you may be facing.

The comments box is open for you…

If you’re a social media person, then you can follow me on Instagram, Twitter, Facebook or Pinterest.

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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.