Hi everyone, I hope you had a good weekend. Sharing something very different today and also something very personal. I don’t tend to share too much on my blog about life. I used to, but I realised that some people were using it as a way to talk about me like they knew what was going on in my life. Instead of actually speaking to me, they’d twist it and shit stir, so I stopped.
I share more on my Instagram Stories as I feel like I have a little family there. However, I have shared things about my health in the past on my blog. So, I felt it only right that I share what’s been going on more recently. It’s been a pretty overwhelming few days after finding out I do have Ehlers-Danlos on Friday.
To begin with, I felt huge relief. Finally someone linking everything together and giving me an answer. However, yesterday I felt really overwhelmed and like I couldn’t handle it.
You see, it’s not only Hypermobile Ehlers-Danlos that I have. I also have Postural Tachycardia, Costochondritis and suspected Mast Cell Activation. There’s also this interesting skin thing where you can write on my skin called Dermatographia.
I’m about to go on an 18 month waiting list to get tests at UCLH for the Postural Tachycardia (PoTS). My specialist says she hardly ever refers people for the tests as they’re not very nice and many people can control it with diet, exercise etc. However, she thinks I need both medical and non-medical help to manage mine.
I hope that by sharing I can raise awareness around Ehlers-Danlos and getting a diagnosis. Too many people go misdiagnosed or undiagnosed because it’s not understood well enough. I did for years. However, I finally decided to seek my own help and go private. I started to think that these individual diagnoses I had and all the other symptoms I had, were linked.
Before anyone says I’m bashing the NHS, I’m not. I feel incredibly lucky that our country has a National Health Service. Although my specialist is private, my tests will be done via the NHS. However, I have been passed around a lot of people while trying to be diagnosed. People who, instead of admitting they don’t know, have fobbed me off and made me feel like I’m going crazy.
BEFORE WE TALK ABOUT NOW, LET’S TALK ABOUT SYMPTOMS…
For as long as I can remember, I’ve always been super bendy, clumsy and injury prone. I also used to get super random illnesses that would floor me for ages. But, I thought it was “just me”.
My legs are labelled banana legs in the family as they bend backwards. However, there’s also a lot of instability there. They lock almost daily. When I walk, I have to make very deliberate steps because I’m trying to not make my legs fly backwards. I have bursitis, tendonitis all the time. Equally, if I don’t move my joints for a while they get really stiff and painful.
My joints have always hurt, my knees were the worst growing up. My Doctor told me it was just growing pains. However, I’m nearly 30 now and they’re still horrific. I was told I had arthritis in my knees as well. However, I’ve seen so many different people and been told so many different things, I just don’t know anymore.
My wrists get “stuck” where I can’t click them and can’t put any weight on as the pain is awful. I can’t lean on a hip for too long without horrific pain. They continually pop and pinch.
My thighs and arms feel bruised when I touch them, even if they’re not. Any grazes or cuts take ages to heal and get infected EVERY single time.
I’ve sprained, fractured and dislocated more joints/bones than I can remember. I always used to laugh it off as me being clumsy. I’d never questioned why someone else could fall 20cm and be fine, but I fell 20cm and fractured my coccyx. I can only stand up for about 10 minutes before needing to sit and rest as my whole body hurts. It’s almost like gravity is too much and it hurts to exist.
At school, I always thought I was unfit. Whenever I did exercise for more than 5 minutes my chest would hurt so badly. It would be tight, painful and I wouldn’t be able to catch my breath. My chest felt bruised too. That still happens all the time, even though I work out 5 times a week.
Then the dizziness started. Whenever I change position I almost black out. It’s like curtains going across my eyes. If a full on black out doesn’t happen, I’m just generally light headed. Sometimes I can be standing or sitting still and the room will spin or I’ll black out.
At 18, I injured my back at work. I slipped 4 discs in my lumbar spine and my back never fully recovered. I always took ages to heal from any injury too. If the doctor said 6 weeks, it would be more like 3 months. I also fractured my knee around this time and that took months to heal as well.
My skin bruises ridiculously easily. I can brush past something and bruise. People’s touch hurts if it’s too firm. I’m tired all the time no matter how long I sleep. I was accused of being lazy and I started to believe it. Now, I know that it’s been this condition the entire time.
I can go from freezing cold to my core, layered in blankets to sweating in 30 seconds. Equally, I can go from 100% to “OMG I can’t move and my eyes are closing” in 10 seconds. It happened once in the car and it terrified me. I closed my eyes for a split second, luckily I managed to snap out of it. However, since then I’ve been scared to go driving at night. Or do long distances.
I get so many horrific stabbing, throbbing headaches. And full on migraines with nausea. Once I had a headache every day for a month. It was exhausting.
I can be holding something and looking at my fingers grasping it and then it falls to the floor. It’s very odd seeing that happen. I also get a lot of brain fog. Or, I stutter or can’t find the word. I have to describe what it means and then someone else will say the word. Or my brain is telling me what the word is, but I cannot get it out. Just upstairs a minute ago, I was trying to tell my husband something was by the soap. I knew I was trying to say soap, but it wouldn’t come out.
Sometimes my legs don’t feel like mine. I know they are, but they feel odd. Cold, numb, they twitch. It’s such an odd sensation. I sometimes don’t know if I’m up, down or sideways and fall over.
Then there’s the gastro issues. I’ll go from one extreme to the other toilet wise. I never found a particular trigger food wise. It’s completely random. I can’t eat big meals as I feel so sick and like my tummy will burst. I also get sharp pains and cramping. I’ve always had trouble swallowing, but again, I assumed everyone did.
I have pooling of blood when I stand too long, which makes me feel weak. My hands and feet are always freezing cold. However, every evening my knees will get this burning hot rash and feel like they’re on fire and swollen.
My back has been the biggest source of pain. I have bone spurs, sciatica, early arthritis. I’ve been to hospital 3 times with the most horrific back pain. With numbness around my buttocks and the inability to pass urine. The latter 2 times they told me that they suspected cauda equina.
I’m allergic to the most random things. The sun, grass, dairy, honey. I either get an itchy rash or hives.
My hair is weak. It snaps and falls out. It’s thin and fine. I’ve tried alllllll the supplements and scalp treatments and nothing improves it.
Then there’s the mental health side of things. I’m crippled with anxiety. When I’m in a bad flare up, it’s easy for me to fall into depression because I get so frustrated with my body.
TRYING TO GET A DIAGNOSIS…
I’ve had more tests that I can remember. Been referred to surgeons, rheumatologists, ENT, pain clinic, physiotherapy. I could never do the physio exercises as my body hurt so much.
After all the tests for my dizziness, I was told “some young ladies are just dizzy”. Or I’ve been told that it’s because I’m tall. Some doctors are great and supportive, others fob you off. I let myself deal with that feeling of going crazy for years. I started to believe maybe it was all in my head. Even though, I had very real, physical symptoms.
Some people’s bedside manner leaves a lot to be deserved. My last doctor was great and managed to get me my hypermobility and arthritis diagnoses. However, I was still dealing with all the other stuff. A lot of which I now know is autonomic dysfunction – PoTS.
My new doctor, without knowing anything about me, wants me off all my medication. He has no clue why I’m on it, he just thinks that because I’m 29, it’s too much medication. Now, believe me, I wish I wasn’t on opioids and incredibly strong painkillers, but I need them.
It actually makes me angry at myself how I just took these professional’s attitude with me. Last July when I was in hospital, this snooty surgeon and the Pain Clinic were SO DAMN SURE it was all in my head. They were literally trying to manipulate me to do stuff and come off all my meds as they said it was all in my head.
I’m so glad I went back to my Doctor and she basically said absolutely not. So many times I’ve almost given up on ever knowing because it’s soul destroying. Some people say it’s this, others say it’s this or it’s nothing. I had an MRI which clearly showed arthritis in my spine. This surgeon said it was in my head, then someone else told me “everyone has arthritis” – maybe later in life, but at 24??!
DECIDING TO SEEK FURTHER ADVICE…
At the start of this year I was really ill. On top of the back, knee and hip pain. I started getting an awful lot of gastro and chest pain and heart fluttering. I woke up at midnight one night with a sharp pain in my chest. My husband was convinced I was having a heart attack. Then I thought it was possible an anxiety attack. It calmed down eventually. But for an entire month I could only take shallow breaths.
I also couldn’t eat as I was in so much pain. I thought maybe I had a hiatal hernia or gallstones. I’m still suffering some gastro issues, but I am now on a double dose of omeprazole and that seems to be taking the edge off. These symptoms becoming a constant on top of the musculoskeletal problems made me question if everything is linked.
I hadn’t heard of Ehlers-Danlos until someone I went to school with was diagnosed with it. I had watched her struggle to get a diagnosis for many years and her story was eerily similar to mine. The symptoms, the different referrals, the fobbing off. It made me start to question if I had it. I’m not one for a google diagnosis, so I searched the Ehlers-Danlos specialist database and found someone near me.
Before my first appointment, I sent over my symptoms and she 99.9% diagnosed the autonomic dysfunction there and then. Again, something I’d never heard of. She sent me over the symptoms and it was 100% me. It was all the weird quirks, like not being able to regulate temperature, brain fog, dizziness, blood pooling, weakness, fatigue, chest pain, shortness of breath, poor sleep, heart fluttering and palpitations.
I felt hope for the first time in years. Like I might finally get some answers. I was very anxious before the appointment, but I needn’t have worried. I clicked immediately with my specialist. She has the same conditions, so knows the symptoms and knows how hard it is to be diagnosed.
She diagnosed me with Hypermobile Ehlers-Danlos, PoTS, Costochondritis and suspected Mast Cell Activation. Every symptom I’ve ever had has an answer. Finally.
Hypermobile Ehlers-Danlos is a connective tissue disorder that affects the entire body. It can cause a lot of joint pain, dislocations, injuries etc. It also affects the skin. I have smooth, velvety skin that’s almost translucent and is stretchy. Many people don’t just have Ehlers-Danlos, they have other conditions secondary to it, like I do.
The PoTS is an autonomic dysfunction. Basically my nervous system is haywire and can’t regulate itself.
Costochondritis is inflammation of the chest wall where the sternum meets the rib joints/cartilage.
Mast Cell Activation is where your body reacts to a tonne of stuff by sending a histamine reaction – hence rashes, hives, welts etc.
I’m aware that this doesn’t change the day to day. I’m still living with these symptoms, so the diagnosis itself doesn’t change anything. However, for me, I feel a weight has been lifted. Because it has a name and I can start to understand how my body works. I’ve been warned I may still come across people who want to fob me off, but that’s their ignorance in not understanding the condition.
It just feels amazing having someone who can help me fight my corner. She can also help with exercises or particular movements which can help with the pain. There’s one she taught my husband for when I get a really severe headache and it really works. I’ve had two awful headaches since Friday and he’s done it twice and it worked both times. She can also help keep me supple and keep parts of my body moving. Even though I’m bendy, there are still parts of me that are very stiff because they’re trying to compensate for other things.
I felt so mentally strong over the weekend. However, yesterday I had a really tough day. I suddenly felt overwhelmed with all the different diagnoses and the fact I have all these tests ahead. It’s what made me write this post. I find writing out my feelings very therapeutic.
Ehlers-Danlos can be progressive. But it can be managed, yesterday I was just scared of it being progressive. Today I’m trying to think of the positives. It’s not going to be easy, but I’ve already been fighting since I was born. It might be 12 years actively seeking answers, but like I said. Even when I was a kid I remember certain things that were odd.
Moving forward, I’m going to be referred for lots of tests and have to work on ways to keep my strength up. Keep me flexible, but not too flexible. Ways to release pressure and help with the back pain, sciatica, knee pain, hip pain etc. It’s important that I keep moving and keep my cardiovascular fitness up. But, you know what? I’m also going to try and be easier on myself. Not berate myself for not being able to do something or having a bad day. Because I’m not crazy. There are reasons why I am the way I am and that’s OK. I’m doing my best.
Of course, I’m going to try and keep things light hearted and still rip the piss out of myself for clumsy things. I find it hilarious that I’m basically allergic to people. I prefer animals to people anyway and now I have a reason for them not to touch me. My specialist said to take an anti-histamine if lots of people are going to touch me!
The reason I’m sharing my Ehlers-Danlos story is in the hope it could help even one person. If one person starts questioning certain things or something starts to add up, ask the question. If you don’t have it, great, but it’s just not understood. Something which made me glad I went private is that the Royal College of GPs decided to remove the Ehlers-Danlos Toolkit for GPs. Something that was helping doctors diagnose something most already didn’t really know much about.
I may not be medically trained, but I know my body. And we all know our bodies. We know when its trying to tell us something and we should continue to pursue all avenues until we get the right diagnosis. Yes, it might take years, but stick with it.
From sharing my story on Instagram, I’ve heard from so many people who have similar stories. Being ignored, or fobbed off for years when there’s physical evidence. Even if there isn’t. The thing is it’s easy for the medical professional to fob you off and move on. Never thinking of you again. However, the effect it has on you when it happens repeatedly? AND when you’re still in agony? Ask questions, stand up for yourself. Get a second opinion. Choose to never speak to a certain doctor again. It’s your body and your right.
It might be scary, but knowledge is power. Once you understand what’s going on, you can then work on ways to improve your life quality and get the correct treatment.
Ehlers-Danlos Support UK has a great website that’s super informative and may help.
If you want to chat with me about anything or share your story, feel free to email me: [email protected]