EDS And CMT One In Twelve Million

EDS And CMT One In Twelve Million

Does it make me special?

One in 12 Million… the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence!

Some days it feels pretty special, let me tell you why.

I’m not going to dwell on the detailed science involved with hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), the genetics behind the conditions so to speak.  I may get into that all in a bit more detail at a later date.  I will try to explain what it means to live with them each day, why I might look fine one day and not the next.

 

CMT

 

Lets start here, CMT is genetic, it has been passed to me from my mum. We were unaware it was in our family until I was diagnosed after complications having my first baby. It is thought that around 23,000 people in the UK are affected.  I have a 50% chance of passing it on to my children. I have three children now, our youngest had a positive diagnosis just before her second birthday, one of the boys has a negative result and one hasn’t been tested as he has no symptoms… but it may still be there.

CMT affects the nerves in your peripheries, your arms and legs.  Our body’s system of nerves is similar to a network of electrical wires. Some of them, called sensory nerves, are designed to pass information back to the brain about what you can feel with your fingers, toes, legs and arms, etc. The others are command pathways, telling your muscles to do something, like lift your left foot – and are called motor nerves. CMT affects both these types of nerves so you can experience weakness and wasting in your muscles, numbness and sensory problems. In the type that we have in our family the myelin sheath of the nerve, the insulation, isn’t working properly affecting the speed of the signals getting through. This deterioration causes atrophy of the muscles in the foot, lower leg, hand and forearm.

The muscles in my feet have wasted significantly and I now have foot bone abnormalities including pes cavus feet (high arches) and hammer toes and I walk with supination (roll onto the outsides of me feet). My leg muscles are doing the job that the foot and ankle muscles aren’t – thankfully – and I am fortunate enough to be able to still lift my feet. It does mean I over work my hip flexors, iliotibial band and hamstrings to walk and cramp and pain wakes me often at night.

The muscles are wasting in my hands and my wrists are weak giving me problems with hand function and dexterity, they are often painful as they don’t have the muscle bulk to do the work that I ask them to do each day.  I also dislocate and subluxate my thumbs and wrists in a couple of places but EDS has a part to play in this.

CMT is progressive, it won’t get better or go away but it is not life limiting. When I was diagnosed I was a new mum and having a hard time getting my head round it all. My neurologist said to me at an appointment, “If I had to choose any of the hereditary neurological diseases I would choose CMT.” At the time, as I was grieving the loss of my future, I thought he was nuts! But he was right. There are much worse neurological conditions to have, he didn’t know at that time however I had EDS as well.

 

 

 

EDS

 

My EDS diagnosis came later, 10 years later.  At first we thought that CMT explained everything in our families weird and vast medical history but as time went on gaps showed. Rubie blessed our lives but as she grew developed the skills of a contortionist and we started to want answers to all of the unanswered questions circling in our mind.  It was recommended that I see the amazing professor Rodney Grahame before my foot surgeon would consider surgery, at this point I had been reading his books to gain answers to Rubie’s hypermobility, so I had half an idea what was coming 😉 After an hour and a half’s consultation I now had a shiny new EDS badge to wear. The missing pieces of our puzzle now slotted into place.

EDS is the term given to a whole collection of inherited conditions that fit into a larger group known as hereditary disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones, it is the glue that holds the body together. There are several different, distinct types of EDS, but they have some features in common, loose joints, stretchy skin and tissue fragility. I have hypermobile Ehlers-Danlos Syndrome. The exact cause of hEDS is unknown. The features suggest that there is a problem with connective tissues and possibly collagen. The condition appears to be inherited which suggests that there is a genetic cause. It is likely that there is an alteration in a gene, or several genes, containing the instructions for making connective tissue. This results in the connective tissue being less effective.

It leaves me with joint hypermobility, my joints having a wider range of movement than usual, they are loose and unstable, can dislocate and subluxate. This happens daily, this week cutting a slice of cheese I popped out my wrist and dislocated my ankle trying to pull off my jeans. It not uncommon for a sneeze to dislodge a floating rib. In my 20’s I would dislocate my knees on a daily basis with minimal trauma, walking into Regal’s (the local night club) on a Saturday night or turning over in bed. I had major knee surgery to realign things and tighten ligaments so it happens less now than before but is gradually becoming more of an issue again.  As my joints are less stable they are prone to sprains and strains.

I’ve had to make friends with the pain, it’s part of my daily life now. This can be ‘acute’ when I overdo things or as the result of an injury like a dislocation or ligament injury. It can also be a sustained persistent pain, this is worse for me when I am tired and I can feel like my whole body has been beaten. I also get a lot of neuropathic pain. I have learnt a lot about managing the pain I have. I’m a classic boom buster and pushing through my pain every single day wasn’t doing me any favours at all. Now I accept it, deal with it with medication, pacing and distraction and move on. My mindset plays a major part in my pain management as well as the CBT technique of pacing.

My proprioception is poor, this is my body’s ability to sense stimuli arising within the body, with regard to position, motion and equilibrium. To sense where ones body is in space. It affects balance and co-ordination. It is further affected by the sensory and motor nerves in my hands and feet being significantly limited.  I rely on my eyes for a lot, and now I’m well into my 40’s my eyesight needs a little support too!

There is a plus to all of this though, soft velvety skin. Many EDSer’s look years younger than their age. The downside is that I have mysterious bruises appear everyday, my skin marks really easily and my scars are stretched and thin. When I was in the pain rehabilitation programme at Stanmore  a few years ago and first met the girls on the ward they were shocked to hear that I had three children. I was actually 28 when my first child was born and was 38 at the time. Up until I was 39 I was asked how old I was when buying a bottle of wine in the supermarket. In my teens this would frustrate me, at nearly 40 I was quite flattered. There has to be a plus to this right?

 

 

Autonomic Dysfunction

 

One of the worst symptoms for me is the autonomic dysfunction that can go hand in hand with EDS. The functions that your body takes care of automatically, without you having to think about it. These manifest itself with feeling dizzy, faint, passing out, palpitations most often when you change position from sitting to standing. Other symptoms include difficulties in maintaining body temperature, shortness of breath and cheats pain, migraine, adrenaline surges, fatigue, hypoglycaemia, headache, blurred vision and brain fog and abdominal symptoms such as bloating.

These autonomic symptoms never go away they are always lurking in the background waiting to pounce. When they flare life is impossible, I have been in a position for weeks on end where I can’t lift my arm to brush my hair, talk without being completely breathless or stay awake for more than a couple of hours. I am very thankful that my autonomic symptoms flare up then settle down again. I have and a flare last for months in the past and it probably take a year to pass fully. Imagine living with it at that level daily, forever?  I manage my symptoms every day by drinking plenty of water and adding salt to everything, increasing my blood volume, keeping physically conditioned (which is easier said than done!) and some medication.  But key to living well with all of my conditions is to listen to the warning signs and stop before my body completely crashes.

The laxity of the connective tissue in the stomach and colon as well as the problems with the body’s autonomic responses can be responsible for many abdominal complaints, such as bloating, constipation and gastroparesis.  So to combat that I eat a wheat and gluten free diet and it helps relieve some of my gastro symptoms such as bloating and nausea. Small regular meals and medication help with the rest.

 

 

Fatigue

 

 

The fatigue can be relentless, I’m guessing that I am lucky enough to get a triple whammy of this from the CMT, EDS and autonomic dysfunction. Fatigue is a severe form of tiredness that exists despite a proper nights rest – or even a whole week in bed. Many people with EDS are diagnosed with ME or CFS long before their EDS diagnosis. This is exactly what happened to me, when no one could explain why 3 months had passed and I still couldn’t function I had am ME label put on me without being properly diagnosed or supported. Having a son now with true ME I can see the similarities but also the distinct differences between us. He has been much more sick for a much longer period with ME, with post exertional malaise (PEM) and cognitive symptoms, like memory loss, recall problems and concentration being the hardest symptom to manage long term (not ideal when you are studying for your A levels).

 

What Helps

 

Having a good attitude to having chronic illness helps. I’m not saying it’s always easy; when something pops and won’t relocate for days and days it’s hard, managing a family, school and hospital appointments on bad days is tough, being taken to court by the local authority because you are trying to secure an education for your teen that is too ill to get out of bed – you get the picture, it’s not all rosy.

The key to success? It begins with acceptance. You don’t have to be jumping up and down with joy that this is the situation for you but to accept that for today this is how it is – and not fight it.  You need your energy and it’s not to battle your situation 24 hours a day 7 days a week.

When you are in the depths of a new diagnosis and processing what that means for you and your future your mind is consumed with thoughts of illness and loss. It’s natural I get it. I’ve been there.  But your world can shrink in a heartbeat… suddenly all you are talking about and reading about is your illness and condition; the worst case scenarios, the Facebook groups full of people competing to feel the worst.

It time to get real, how will this make you feel? About your life? About your future?

Arming yourself with the right information, getting educated – that’s great – but getting lost in a black hole of sadness and self pity is not. There is a fine line. Be careful.

Live, re-connect to who you are and what you want. Has that changed? Great, in life the only thing that we know for certain is that things change. What do you want now?

Who are your people? Who lifts you up and brings you joy? Who drains you? Who believes you? Sometimes the people that are there for you 24/7 to give you all the love and support may be keeping you stuck – even if their help comes from a place of love. What and who do you need right now?

What can you do? A small step that can make you feel a little better? A little stronger? (no matter how small) Can you do it every day and keep the consistency going.

Can you answer some of these questions for yourself and think about how you could start to make steps today?

Mindset work and pacing has been key to me living well with EDS and CMT in my life, it’s why I am a huge advocate for it and why I help others in similar positions in my coaching practice. I know and see first hand the good it can do.

I combine a combination of wellness coaching, CBT, mindset and NLP techniques to get fantastic results form my clients. To help them to move from stressed, tired and overwhelmed to become strong and empowered, energised and confident – ultimately in control.

If you would like to talk about how working with a coach could help you book a call, it’s free.  It doesn’t matter if you qualify for the programme or not, during the call we can help you to get clear on what’s holding you back.

I’M IN – BOOK MY CALL

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The Thrive Tribe is a community of women who have chronic illness.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. 

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real.

From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar.

But, do you know everything there is to know about EDS?

When I was diagnosed I remember the Aha moments kept coming as more and more things from my past slotted into the definition of my shiny new diagnosis… like my narrow arched palate and local anaesthetic never working!

Please share far and wide!

Let’s make people aware that having EDS is far more than soft skin or loose hypermobile joints.

 
 
A is for adrenaline
 
B is for bowel and bladder
 
C is for connective tissue
 
D is for dislocation
 
E is for elastic, velvety skin
 
F is for fatigue
 
G is for genetics
 
H is for handle with care
 
I is for invisible illness
 
J is for joint hypermobility
 
K is for kyphoscoliosis
 
L is for local anaesthetic
 
M is for mast cells
 
N is for narrow palate
 
O is for orthostatic intolerance (POTS)
 
P is for pain
Q is for questions
 
R is for relaxin
 
S is for slipping rib syndrome
 
T is for TMJ
 
U is for unexplained stretch marks
 
V is for vascular EDS
 
W is for widespread symptoms
 
X is for x-rays
 
Y is for years to diagnosis
 
Z is for zebra
 
 
Do you have a loved one with EDS?
 
Share this post and get their opinion…

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The Thrive Tribe is a community of women who have chronic illness.

You may feel like no-one understands what its like living with your chronic illness, that you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life.

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

 

How I Fake My Chronic Illness Symptoms

How I Fake My Chronic Illness Symptoms

I fake my EDS symptoms all the time.

Every day.

For as long as I can remember.

It is second nature, it’s why I am so good at it.

 

Now I don’t mean I’m faking the symptoms of my condition, making them up, exaggerating them, they are very real to me and they are ever present in my life.  Quite the opposite in fact, because of the invisibility of EDS I have become a master at faking being ‘normal’.

Here are the top twenty ways  that I have learnt conceal my illness on daily basis and to blend with the masses – to appear to be normal. How do you fake your chronic illness symptoms?

One. Smiling… I make a huge effort to have a happy life and try not to let things get me down.  Just because I am happy whilst being ill doesn’t mean that my conditions have disappeared, it simply means I have chosen to be happy in spite of my illness’, which is no mean feat.   I have mastered the ‘fine thanks’ response when someone asks me how I am, no one honestly wants to hear the truth!  It’s important to be happy, it’s good for your health.

 

Two. Make up…. I put my face on every single day, it is my mask for the real world and I like wearing it.  Only those people that know me very well can tell how I am feeling behind the smile and the make up.  By looking into my eyes.  Even if it’s just a bit of mascara and a sweep of blusher it makes me feel better about the day ahead, more human.
 

Three.  Ditching the kettle… I have boiling water plumbed in because I can’t lift a kettle without a dislocation.

Four.  A pushchair… When my children were young my mobility was at its worst.  I would get out the buggy to hold on to when I walked along even if the children didn’t need to sit in it particularly.  I would let them hold on and walk slowly with me while it held me up.  I miss the fact that they are all too big for a pushchair.

Five. Leaning… Standing is hard work 1) because of pain and 2) because standing still makes me dizzy and when things are bad I can be clammy, shivery, breathless and can even faint when upright.  You will notice me just propping myself up on a table or a doorway.

Six. Fidgeting… Sitting and standing for any length of time is uncomfortable and moving just helps.  Fidgeting when I’m standing, calf pumps, fist pumps or squeezing a stress ball hidden deep in my coat pocket can also get the blood pumping to avoid me passing out.

Seven.  Standing up slowly… Always, to minimise the head rush and dizziness.

Eight.  Pacing… I am driven, I like getting loads done but I would find that I would push and push only to crash later.  Pacing used to be my enemy but I have had to work hard to make it my friend.  All of my daily activities are paced and no one would ever know! It increases the amount that I can achieve over a given period instead of feeding into the boom bust cycle.

Nine.  Hiding fatigue… You can’t see fatigue, unless you know me well and on the days when my fatigue is at it’s worst you won’t see me at all because I physically can not get out of bed or leave the house.  My life is planned 24/7 to manage this element but sometimes it creeps up on me and catches me out.  I have collapsed before unable to put one foot in front of the other and been rushed to hospital.  People won’t know or understand how bad this can get because they just wont see it.

eds pain scale graphic

Ten.  Managing pain… I have become an expert at hiding my pain (and I have a pretty high pain threshold), you won’t see the amount of medication that I take, the ice, wheat cushions, massage, hot baths, propping my joints with anything just to get comfy.   I am a master of disguise too, I can be standing, smiling and chatting with someone with a rib subluxated, unable to relocate it and unless I knew you well I wouldn’t even tell you!

Eleven.  Planning… If I do have something particular on a certain day then an immense amount of planning goes into it.  I’m still paying for a Spooky Walk for Halloween a week later in terms of pain and autonomic dysfunction because I had a meal out two days before and didn’t plan enough time for my body to recover in between.

Twelve.  Avoiding obstacles… This has become like second nature.  This time of year just walking to the car there are obstacles, the blanket of Autumn leaves may look pretty but in the dry they mask the unevenness of the pavement beneath and in the wet they are slippery.  I always walk around things where I can, or take another route.

graphis saying 'how do you fake normal when you are chronically ill?'

Thirteen.  Wearing a vest… I have the ability to stand in 30 degree heat in the summer and still have goosebumps, I wear vest all year round.  I’m also fond of a scarf  gloves and a hat.

Fourteen.  Orthotics / braces… These are hidden in my shoes, under my jeans.  Unless something visible like my wrist or thumb was braced you would never know.  There was one time this year my ankle was in fact braced as it was subluxated and wouldn’t relocate.  A mum at school spotted it and questioned if I was wearing a tag!  What she didn’t notice was the excruciating pain on my face as I had to bare weight, I have learnt to hide it so well.

Fifteen.  Tight clothes… Skinny jeans aren’t a fashion statement for me they are a necessity to hold my hips and pelvis in place and increase proprioception to my joints.

Sixteen. Eating well… Eating small regular meals helps me to manage a whole host of gastro and autonomic symptoms as does eating gluten free.  If you went out for dinner with me would you know by my choices?

Seventeen.  Being vague with arrangements… This is another one of my coping methods, I can never tell how I will be feeling from one day to the next let alone a week or two in advance so I tend not to make definite plans unless I have to.

Eighteen.  Linking arms with a friend… To steady myself perhaps because I’m hurting or if I’m walking somewhere tricky; slippy leaves, a wet floor or if its icy.

Nineteen.  Friends… Making time for a regular cuppa with friends to chat about anything else but Ehlers Danlos, health and hospitals.

Twenty.  A sense of humour… This is so important when faking being normal.  Being able to laugh at yourself and having the ability to look back on situations that have happened with a smile (because there are many) is a must.

 

So when someone calls me a faker in a way the are right, I have become a master at concealing my EDS symptoms in order to just live.  I choose when to talk about what is going on for me and when not to and who needs to know that information about me.

What I’ve learned is that my conditions are a part of me, they are not who I am.

They deserve their space in my life in order that I can manage them effectively but they are not all that I am. I put many things in my life over and above chronic illness symptoms and disability and that ensures that it is kept in perspective.  I’m a mum, wife, coach, educator and advocate – I love to draw, to write, to read, to eat in fancy restaurants and enjoy time at the local pub in front of a roaring fire.  I love the sky and all its colours and to watch the sunrise with a nice cup of tea.  Absolutely all of these things consume my thoughts before chronic illness gets a look in and that is key to living your best life even with an illness or disability.

 

The original version of this post was published on My Stripy Life and was picked up and published on The mighty Site you can check it out here and my other published posts.

Here are some of the comments on the post…

Oh, the pushchair….how I empathize with that. I just sank an eye watering amount of money into what will be our last stroller…my daughter is almost 5, and she rarely rides in it, but when she runs out of energy, she is DONE and at 40lbs, is too much for me to carry for very long/far. I get the odd funny look at her in the stroller, but frankly I don’t care. If it helps us get out when my joints are angry at me, and when she is having a rough day, people can just mind their own business.

I do so many of these! Thank you so much for sharing, now I don’t feel like I’m the only one. I sometimes wonder whether I should actually be honest about how I’m feeling with people, but from experience, unless they’re already close to me, they don’t usually pay any attention even if I do tell them the truth. I sometimes we could do with a hug, so I’m sending one to you to say well done, not in a patronising way, but in a wow you’re amazing way. To have gone through that much and still function each day, even if deep down you don’t feel like you are, you’re truly amazing.
Hi you are a very courageous woman my lovely and as the comment made by Linda my partner has this nasty condition, she also has O, I, brittle bones she never complains and yet like yourself is in constant pain . The drs told us it is very rare disease but im not so sure its that rare as we have read and heard about so many more people who have this disease .thanks for sharing your story with everyone my partner felt quite alone before but is now seeing she isnt on her own I love her so much and it tares me apart not being able to take her pain away.xxxx
Sounds exactly like our daughter who is 16 years old. I sent it to my husband and if he would have not known it was written by someone else, he would have thought our daughter wrote it. Thank you for sharing. Having a child who as EDS has not been an easy feat lately, especially, when she is also a teenager. It is nice to know there are others who have experienced the same exact symptoms as she is currently.

The first week it went up it was the most read post on The Mighty Site.

Please share your thoughts below – others would love to hear. Be Mighty!

 

graphic with the words 'How i fake my chronic illness symptoms @sarahwellscoach

Join The Community

Chronically Empowered is a community of women who have chronic illness.

You may feel like no-one understands what it’s like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. 

We will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

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Pain has been a part of my life for as long as I can remember, sprains and strains as a kid, always falling, unable to weight bare on and off throughout all my childhood which I now know was due to a Labral hip tear and impingement, as well as dislocations,...

How To Cope When You Are Overwhelmed By Your Chronic Illness Diagnosis

Why do you feel overwhelmed when you have a chronic health condition Dealing with a chronic illness diagnosis can be overwhelming, leaving you feeling lost, frustrated, and even powerless. Chronic illnesses can cause physical and emotional challenges, which may lead...

An Open Letter To My Charcot Marie Tooth Disease

Writing can help you to manage stress by understanding what’s going on in your mind + can be a healthy + intimate way to deal with your emotions about your health condition and what that means. I have always found the process extremely cathartic : here is a letter I wrote to my Charcot Marie Tooth disease.

The Top Three Things That Help Me Manage My Chronic Illness

Narrowing this list down to just three things that help me manage my chronic illness has been tough.  I've tired not to choose the top three things that help me manage EDS or CMT or even look at it through the eyes of the main symptoms but more through the lens of my...

Emotional Mastery In Chronic Illness… Lessons From Disney’s Frozen

What if the thing you really want is hiding right where you are afraid to look?   This week my daughter turns 12.  I am not quite ready to accept that she is ALMOST a teenager - my sweet little girl is turning into a bright and sassy young lady. For a birthday...

Evolution. Life After My Rare Disease Diagnosis.

20 years ago I was diagnosed with my first rare disease, but this story is not just about diagnosis. Looking back on my life I don’t recognise the woman I was before, or who I became in the beginning. It changed me then allowed me to evolve, this story is my evolution.

Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness

It happens to everyone no matter how many hours we have in a week, how supportive our families are or how great we are at delegating. Everyone. No one has there shit together all the time no matter how much  they pretend that they do. But when you are living with a...

I’m Fine… What the f**k does that even mean?!

I’m fine. I used to use this reply all the time when people would casually ask me how I was. Short, sweet and to the point, but what does 'I'm fine' even mean?  The dictionary would have you believe that I was feeling 'in a satisfactory or pleasing manner or very...

EDS And CMT One In Twelve Million

Does it make me special? One in 12 Million... the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence! Some days it feels pretty special, let me tell you why. I’m not going to dwell on the...

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...

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