Theres a lot of information to convey here so to stop you getting bored and to stop me getting totally lost in what I’m saying, I’m just going to list them, tell you when I first noticed them, when and who I tried to get help from and whats being done about them as they all kinda weirdly link up.
In my early 20’s walking home from work ever night, I’d tell myself ‘I just need to make it to the next lamp post’ over and over until I got to my front door, I’d be that exhausted. It wasn’t until one day in work when I was slurring my speech, couldn’t walk or think straight that I (and my lovely colleges) got worried. I booked an appointment with my GP and was running late, he phoned my landline and when my Mum answered he began to question her about me possibly ‘burning the candle at both ends and partying, like these young one’s do.’ My Mum was gobsmacked and told him a) I was an adult and therefore he was breaking patient/Dr confidentiality b) I was a sensible young woman and if that if partying was the reason for the exhaustion I could have figured that out for myself and c) he was being very assuming, patronising and arrogant and the least you expect of your Dr is for them to believe you when you are clearly ill! He did a simple blood test and confirmed I had an under active Thyroid. Sadly, that was the simplest and quickest diagnosis from then on.
Massively Swollen Puffy Ankles and Feet
Aged 12 I went to my GP one summer and showed him my giant elephant ankles and feet. He immediately told me that I was obviously having way too much salt. I told him my parents brought me up to eat moderately healthily and I didn’t add extra salt to my meals and never ate ready meals. He told me to reduce my salt intake ‘drastically’. Years later in my early 30’s I mentioned to my mate that “My body just doesn’t sweat” so when I’ve been walking in the sun for around 40 minutes I feel nauseous, have a headache and feel really quite feel faint. He immediately looked concerned and asked if I was getting enough salt as you need a certain amount for your body to start sweating and to cool down so you don’t get heat stroke, which I’d been getting! Also the body needs a balance of salt, sugar and water (those electrolytes in those isotonic drinks everyone buys these days) in order for the body to function properly. As soon as I increased my salt intake I stopped getting the terrible swollen ankles and feet which had dictated my miserable fashion choices every summer for the past 20 years and I had lots more energy as I wasn’t dragging around pounds in water weight!
By the time I was in my mid 20’s I figured something must be wrong as was I tall and slim, yet I had a very distended round belly, like two thirds of a football. I looked four months preggers! I went to see a nurse and was told “Be glad your tall and slim in most other places, we can’t all look like a model.” and sharply asked “Is there anything else or is that ALL you came to see me for?”
A few years later I figured out it must be a food intolerance from several articles I’d been noticing in various magazines and went to see a GP. She agreed and told me to do a food elimination diet. When I asked for more information she looked at me like I was daft and said “You cut out most foods and then reintroduce them slowly. Anything else you need to see me about or is that it?”
It turns out after paying privately for a blood test along with a thick info booklet and food planner, that I’m intolerant to wheat and gluten and dairy and eggs and that symptoms aren’t always evident for up to four days. There is no way I’d have been able to figure out all of my intolerance’s and kept up a healthy diet on my own! Symptoms include bloating, facial redness, water retention especially in the face and stomach, skin itching, temperature fluctuations, constant thirst, headaches and stomach pains, sneezing, blocked sinuses/excess snot (sorry!) and fatigue. I’d had all of these all of my life (when I was a kid it was like I had the flu constantly. If I made it to school for four days in a row, it was miracle!) but the symptoms were never connected to food intolerance or even to each other.
Had this all of my life, first noticed by my parents and primary school teachers but not by my Dr who I’d been under since I was born! Teachers asked my parents, my parents asked my teachers, both were utterly baffled at my way of thinking and doing things. When I was 28 I read an interview with the singer Florence Welch who talked about Dyspraxia and it was an utter revelation!
I asked a GP to get help with this aged 30. He was sympathetic to the amount of stuff I’ve always struggled with and amazed I hadn’t been diagnosed with disability as a teenager or at college. He astonishingly referred my to a Neurologist. These referrals are like gold dust! I then got passed between three of them because non of them dealt with Dyspraxia and didn’t really care or know who did. Five years later, yes FIVE, I’ve gotten a referral to a mental health team with maybe a years wait list to then get referred to some kind of Physiologist, hopefully the right kind.
Sensory Processing Disorder (SPD when your brain over or under processes stimuli)
A large amount of people with Dyspraxia also have SPD. I along with everyone else just thought that I have very particular quirks and like things just so, however as a kid I’d get really upset easily if I was too cold, too hot, the food ‘felt funny’ in my mouth, clothes were too scratchy or it was too windy etc. I have more quirks these days but get less annoyed/upset because I realise it’s just my sensory shit and I can find ways around it or ways to cope with it. Unless things I’ve been expecting and looking forward to something and then it suddenly changes, which really really upsets me as I feel sort of lost and bewildered. Lack of ability to adapt to new things is very common for people with autistic spectrum disorders. SPD and Dyspraxia kind of run parallel and overlap a lot with spectrum disorders you see so some people who have Autism/Asperger’s also have Dyspraxia.
I’m so glad I found blogs written by Dyspraxic people mentioning SPD because I then found an amazing Facebook group for SPD. We aren’t as unique and weird as we were made to feel at all and actually have masses of sensory quirks in common.
I asked my Neuro (who denied this condition even existed and said ‘It’s just one of those things, your just being too sensitive’) to refer me to an Occupational Therapist (OT) for help with my SPD and Dyspraxia. She turned out to be clueless as to the term SPD, didn’t seem to understand what proprioception was (the feeling of where the outside of your body is compared to the air around it) or interpception (your bodies navigation system and steering and the way it interprets your senses. The ability to sense the position and location and orientation and movement of the body and its parts. Responsiveness to external stimuli; the faculty of sensation) because she kept just describing me as ‘clumsy’ which is ridiculously simplifying the problem and ignoring so many things which can be done to help with all of that, I later learned. Her advice with my severe memory problems (to the point I feel like I’ve got early onset Alzheimers a lot of the time) and wonky concentration was to print off a child’s work sheet from the internet suggesting I group things together that I’m trying to remember. Gee thanks, I could not have done myself – oh wait….
Demyelination (when the Myelin sheath which protects your nerves from damage is attacked by your immune system)
This was discovered by mistake when I had an MRI looking for reasons other than Dyspraxia why I might have had Dyspraxia all of my life as my Nuero thought there must be something else causing it. He happened to discover Demyelination which I can’t have had all of my life because it usually develops over time and from the age of around 20. It could be MS it could be something else. Whatever it is, my immune system is basically attacking healthy cells thinking they are invaders, causing them to wear and then to get damaged and then scar so the nerve signals get weaker or disrupted/distorted.
Hypermobilty – when joints are too flexible, which can lead to joint and muscle pain, joint stiffness and accidents and Arthritis, the auto-immune kind oddly enough!
A large majority of Dyspraxic’s are hypermobile. I’ve been having problems with my joints since I was 14 when one of my knees sublaxed, meaning the joint almost comes out of place but manages to just hang in there and in my case, rock back into place again. I was sent for an X-ray and told I was fine.
This happened three more times by the time I was 20 and it had gotten to the point were I was no longer able to run without my knees suddenly collapsing and I was in mild pain all winter. I complained to my rather perplexed GP and I got sent for another X-ray and again told I was fine and ‘it’s just one of those things’.
So at the age of 33 I asked for a referral from my Neurologist (utterly incompetent as a Neurologist but he’d do any referral, just to get rid of me I think because I had ‘so many unusual difficulties’) to a Physiotherapist. She was a good laugh and patient with me but couldn’t understand why certain exercises hurt my joints, she suggested I wasn’t doing it correctly, then when she realised I was she just looked confused. Again I got the usual ‘just one of those things’ shrugs.
I asked for another referral to a different Physio “Someone who understands a lot about hypermobilty because my last Physio seemed to be utterly unaware of the condition/disabilty somehow.” A few days before my appointment I learned from the Physio’s secretary that my Neurologist had referred me for weaknesses in my forearms and wrists, not mentioning hypermobilty at all. Utterly irresponsible! If the secretary hadn’t have checked (after remembering my previous request) I’d have possibly seen a second oblivious Physio who, again, could have done more harm to me than good.
So this new Physio Dave was amazing, he not only understood Hypermobilty completely he was also familiar with Dyspraxia and two other related disabilities, one of which we both agreed I most likely have. He gave me brilliant (and realistic) daily exercises to improve my balance, co-ordination, control, strength and stamina. He’s referred me to a Rheumatologist who should be able to tell if I have Ehlers Danlos Syndrome and what type.
My GP (who was surprisingly familiar with EDS) asked me why I wanted the referral “because there’s no cure anyway.” I actually had to explain that if I’d have had a diagnosis years earlier I could have gotten help with so many health problems (which weren’t taken seriously) over my life, which have needlessly gotten worse and done damage so surely it’s better late than never?! Plus, EDS effects the heart so surely that should be monitored at least!
Ehlers Danlos Syndrome
A certain amount of people who are hypermobile have EDS. It’s simplest definition is faulty collagen, meaning it can be dense in some areas and sparse in others like Swiss cheese, so totally uneven and far too stretchy – Jim Carey’s face has nothing on me! This can effect connective tissue (hence the hypermobilty), your heart valves (mine were faulty when I was born), your digestive system (it’s common to have intolerance’s to wheat and dairy and for it be slow in general, which I have), to have an underactive Thyroid, teeth and bone weakness (my teeth are terribly weak and wear down easily), visible small blood vessels like thread veins and bulging blood vessels (both of which I have on my legs – sexy), uneven collagen (my cheeks are like a relief map of a tiny hilly area, my gums are so fibrous that general anaesthetic is useless, my boobs are way too heavy for their size and I had terrible stretch marks by the time I was 14, I have some scars which are sooo soft as are the palms of my hands and feet incidentally but other scars which are way over the top compared to the initial damage), difficulty absorbing and using certain vitamins (I can’t absorb Vit B12 and need injections instead). There are literally no other symptoms left, I have them all. If these were Pokemon I’d be well chuffed.
Four things to add context….
Each referral to a new ‘specialist’ (I use this term loosely these days) takes between 3 and 12 months of waiting on a wait list. So nothing happens quickly.
Fatigue is increadibly common with people who have Dyspraxia and Hypermobilty because we have to work so hard just to do the simplest of things and my Demyelination also causes terrible fatigue especially in the heat. Oddly this has never been acknowledged by any of my GP’s a) because my Nuerologist hasn’t bothered informing them and b) they all consider it to be just a side effect that’s not serious, even though extreme fatigue (to the point where I sometimes have to be helped out of bed in the pm and with getting dressed) is the most debilitating thing I struggle with, at some point every single day and the reason I can’t work.
After asking a wide range of people in various forums and reading a lot on this subject, it would seem that a lot of people with hypermobilty, dyspraxia, EDS, Asperger’s and Autism seem to be genetically prone to food intolerance. Food intolerance is now thought to be auto-immune related (as our immune system reacts largely to the health of our gut). It’s fascinating (but rather logical) that what we digest can effect the auto-imune system, which in turn can effect the brain, which in turn goes full circle and has physical effects again!
I’ve changed Neurologists. My new one did lots of tests, said he was going to send me for more and actually seemed to understand the terms and disabilities I was referring to – hurrah! Shit, I forgot to ask him to inform my GP’s that my extreme fatigue is very real and why. Looks like I’ve got a phone call to make.
It’s utterly exhausting researching my conditions and deciding on which referrals I need and caring for myself while I wait.