Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘spasms’

Fiery Fury of Flare UPs

Being chronically means I live with the knowledge that at some point, someday I will have a flare of one or more of my conditions. I could go months without one and then have several back to back, or they could be fairly regular. Flare ups are unpredictable, sometimes it’s obvious as to what caused them, and other times there seems to be no rhyme or reason to them. Managing them is a joke. Other than knocking back the muscle relaxants and painkillers the only thing to do is try and ride it out.

I’m currently in the middle of an Ehlers Danlos Syndrome Type 3 and Complex Regional Pain Syndrome flare up. Agony is not a strong enough word to describe the sheer amount of pain that I am in. I knew my EDS flare up was coming, my pain had been getting dramatically worse over 72 hours and it felt like I had battered every inch of my body. What I wasn’t prepared for however was my CRPS to act up.

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It’s hard to communicate to people who don’t have CRPS exactly what type of hellish pain it is. The only way I can think to describe is this. Imagine you have several vegetable peelers the width of your leg, someone is dragging all of them down every millimetre of your leg with excruciating slowness. Digging the blade in to the point it reaches your bones. This evil being has a partner in crime, who is simultaneously pouring vinegar into your open wounds whilst dropping lit matches on to you. On top of all of this is Benedict the Dystonia Alien who is rejoicing in contorting your leg in every position imaginable heightening the pain further.

This pain is constant. Its at the point were it feels like a miracle if I manage 5 minutes without crying. My oramorph only makes a slightly dent in the pain. Sleep is a distant memory as my leg is ravaged with mind boggling pain.  All I can do is hope and pray that this flare up ends soon and does not once again become a fixture in my day to day life.

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5th Blog Birthday

Happy Birthday Dystonia and Me!

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Can you believe it’s been 5 years of blogging already? I can’t quite wrap my head around how quickly this has come around. It feels like just last week, I searched for a webhost desperate to spread awareness of Dystonia after feeling like I was floundering in a sea of uncertainty with little resources to pursue in my quest for answers. Now I confidently tackle my condition head on and happily refer people to resources  I have come  to know and trust.

When I started blogging it was completely in the mindset that it would be purely to raise awareness. Over the last 5 years this has evolved to be a space where I can openly and honestly express myself without fear, safe in the knowledge that someone out in the vast vacuum of the web will be able to relate to what I am going through. My blog has become a site for awareness, expression and connection; I cannot get over how many online friends  I have made. Whilst I am sad that so many of you have to live with this life altering condition, I am thankful for each one of you that has become a vital part of my day to day support network.

Over the last few years this blog has been nominated on several occasions for awards, won one, and even become a resource that several neurologists hand out when diagnosing new patients (this still flatters, astounds and thrills me). I’ve had other sufferers pounce on me with hugs and their stories at hospitals; I love this, it shows me that I am doing something right.

Just a few years ago, reaching this milestone seemed ridiculous. I didn’t know how to live each day let alone 5 years with this hideous condition. Now, several diagnoses later, I have learned to find joy and laughter in my spasms, to treasure every moment that puts a smile on my face and be thankful that drs like my neurologist exist, for without my neuro my world would be darker (literally). So instead of being disheartened that 5 years on I’m still battling, I’m lifting my chin, defying my alien and celebrating each little success.

Here’s to another 5 years.

New Adventure

As many of you may remember in the summer of 2016 I attempted having a little part time job, this backfired on me when my employer refused to make reasonable adjustments and my body went into an extreme flair up.  At the time this wasn’t too bad, but it did leave me pondering as to what I realistically could do.  In February this year I moved in with my wonderful partner, now as you may or may not know such a milestone negatively affects benefits.  I’d been on ESA for quite a while, but moving in with Dame left me £400 worse off each month. The government’s current system presumes that your partner can A) earn enough to be able to afford to be the sole provider B) Is happy to financially support you.

A £400 drop in my income was quite significant as you can imagine.  So I’ve been wracking my brains as to what work I could do that wouldn’t leave me spasming and seizing in a hospital bed. I’d heard about Younique, a high quality skin care and makeup company that would allow me to set my own hours and work from home. In all honesty I thought it was to good to be true, but this week I took the plunge and messaged a fellow spoonie to get her take on the business. She spoke extremely highly of it, and knowing that someone in a similar health situation to me could make it work gave me home.

So here I am now. Today is the start of my 10 day online launch party, and I’m feeling incredibly excited by this opportunity. If you’d like to see what I’m doing then click on over to https://www.facebook.com/smilesparkleglow/. Fingers crossed that this adventure will be just what I need.

Leg Spasms; Lyme or Dystonia

The issue with being chronically ill is that when a new complication arises it can be hard to know whether it has been caused by a preexisting condition, and if so which one, or if a new condition has popped into the question. Over the last few weeks I’ve had increasing amounts of pain in my knees, calf’s and feet. I tried to brush this off but slowly and surely my feet and legs have started spasming. So now I find myself trying to work out if this is due to a spread of Dystonia or a relapse of Chronic Neurological Lyme Disease.

I had a long chat with my neurologist on Tuesday, he’s of the thought that my Dystonia has progressed as I’m still within the 5 year time frame for a spread of symptoms. Personally I’m hoping it’s Lyme related, as whilst still hard to treat, the possibility of remission again is real.

The idea that it could be Dystonia scares me due to the painful nature of the spasms; but I know I can get through it. I just have to take it one wobbly step at a time. I never thought I’d see the day when I would have to strap my leg splints on again but they’re worth the discomfort.

So here’s to crossing my fingers and seeing where the next 12 weeks takes us, by which point we will have a better idea to the cause and therefore treatment options.

Hard Decisions; Hello Meds

Today I reluctantly restarted several of my medications. This was quiet an emotional decision to make as for the last almost 7 weeks I had fought to preserve with breastfeeding; despite the hospital wanting to give him formula from the moment he was born. But I can’t deny that there has been a slight increase in my jaw and eye spasms, and it makes sense to hit this on the head now.

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We had finally conquered breastfeeding

I know I have done well to get this far, but I still feel rather sad that we are now moving on, especially as over the last two weeks we had really got breastfeeding down to a much calmer event. The down side to having rare conditions is that not everyone who is involved with different aspects of my care has an in-depth understanding of just how my conditions affect me, despite my best efforts to inform them as best as I can. If people don’t want to familiarise themselves with the conditions there is not a lot that can be done about this. This sadly has meant that after a very short, under a minute-long eye spasm which I spoke through, a professional who witnessed the spasm presumed I had had a seizure (but didn’t think to discuss this with me) and contacted another member of my medical team causing a day of unnecessary drama and stress. Whilst this has all been cleared up now, I feel that this has left me with very little choice but to take my medicine again so I can prove I’m doing everything I can to prevent this my spasms.

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I had a long chat with my GP yesterday as the whole thing left me feeling rather needlessly judged, after all people with epilepsy have children, as do people who are permentalty blind. Thankfully she is very familiar with all of my conditions, and although she would rather I continued to breastfeed she understood why I felt there was little other choice in the matter.

My botox appointment has come through for august so I’m looking forward to talking through my future treatment plan with my neurologist.

Summer, Spasms & Studies

Summer has arrived without a doubt, beautiful cloudless sky, sweltering heat and wonderful days out whilst I’m on my uni holidays. However, the arrival of summer also means that my body is working extra hard to compensate which has resulted in periods of tachycardia, eye and other spasms and an increase in pain. Sunglasses are now a permanent feature to try and relieve a bit of pressure on my eyes, but short of sitting in the freezer there’s not too much that can be done.

When I first became ill I found my focus was entirely on all the things I thought I wouldn’t be able to do anymore. Over the years I have conquered all the hurdles I was facing or found ways around them. Going to university was a huge deal and quiet the achievement for me. I’d been so reliant on others for years that living on my own and only having care for a little while a day was a nerve wracking decision to make. As you can imagine the idea of juggling a baby and uni has been a bit daunting.

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Stefan’s first trip to Oxford Brookes University

At first, I didn’t know how I would manage both, but last week we ventured up to my university so I could sit my last exam of my second year. I was extremely lucky that my lecturer was willing to look after Stefan whilst I sat the exam. This has given me the confidence that I can do both, and that I’ll find ways to cope, for example little things like strapping the pram to my wrist so that if I have a seizure or have an extreme spasm he’s perfectly safe and can’t go anywhere. Small things like this put my mind at ease and reassure me that despite my conditions I can manage life as a student and mum.

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Keeping the pram attached

Diagnosing Dystonia

Reaching a point of diagnosis in too many cases is a long and hard road to travel down. Despite being the third most common movement disorder there is an astounding lack of knowledge in the medical community. The lucky minority may get a diagnosis in months, but for most it takes years, sometimes decades.

In a way I was lucky that I had heard the word Dystonia once before, though I had no appreciation of its signifinance. Looking back at my medical history I had symptoms long before I realised there was anything potentially wrong. In 2008/2009 I developed severe neck spasms, however this kicked off after a rather spectacular fall from a horse which resulted in me landing on my head, so it was easy to put the spasms down to this. Then in 2010 I experienced for the first time Oromandibular Dystonia. My jaw dramatically deviated for a painful 3 months before we found a maxiofacial consultant surgeon who knew what was wrong.  I was informed that a quick operation where my tempromandibular joint (TMJ) would be washed out and botox administered would solve the problem. I never questioned this and presumed that Dystonia must be some sort of infection. This belief was reaffirmed by the fact that the operation was a success. Shortly after this  I developed arm and back spasms, but for several years I shook these off as simply violent shivers.

In the summer of 2012 I was coming to an end of my first year of midwifery training. For a couple of days I’d had ear ache and swelling and had planned to visit the GP but was in no rush to do so. I now recognise this as a sign of whenever my jaw is going to play up. That weekend I’d popped home to visit my family,  whilst relaxing in the garden with them my jaw started to spasm and once again deviate. My mum offered to drive me to the local hospital which I declined, convinced it was just an infection.

My GP that Monday was horrified. After one look at me I was on the way to the hospital with her convinced I had had a stroke. Countless blood tests and xrays were taken, and eventually a consultant appeared. He was the top bod in his area and had an ego to match. Due to his station I didn’t question his plan to wire my jaw shut. Less than 24 hours after the operation my flatmates were rushing my back to hospital, the spasms had returned with vengeance, breaking every wire in my mouth and dislocating my jaw. From that moment onwards the consultant dodged me. Refusing to see me or remove the wires which were ripping my mouth apart.

It took a further 3 months to find a surgeon willing and able to help me. Sitting in front of the surgeon who had treated me back in 2010 he was apologetic for the state I was in. By this point we had started researching Dystonia as I was now wheelchair bound and unable to brush my hair or feed myself.  

I often wonder whether 5 years on I would have received my diagnosis if I had never met my neuro. The Dystonia Society UK have a wealth of information that has been invaluable. It’s enabled me to ask for treatment and referrals appropriate for my conditions and have informed conversations with doctors. 

I never expected to still be fighting for correct care. The current hospital I am in would far rather blame my symptoms on past traumas than acknowledge the existence of Dystona. It makes me thankful daily that I have a neurologist willing to my corner.

What Causes Dystonia? 

The exact cause as to why people develop Dystonia is currently unknown for the majority of people. For a small group of people it occurs due to a gene mutation, brain injury, infection, secondary disorder, or as a result of medication.  Pinning down the root of the condition is something that research is currently focusing on.

So far we know that for some unidentified reason there is an issue with a section of the brain called the Basal Ganglia. It is known that this region of the brain enhances activity in the motor cortex which controls the agonist and antagonist muscles.  In a healthy person  when they make a movement the way the muscles contract and relax is coordinated and harmonious. However with Dystonia there is a deficient inhibition in the antagonist muscles which can result in both sets of muscles contracting simultaneously. It’s not clear why this happens. 

The Dystonia Society  UK have a fantastic wealth of information on the ins and outs of Dystonia, which I would really recommend reading to find out more information on the condition. For now it seems unlikely that any one particular theory will be proven right in the immediate future,  so I shall continue to personify my Dystonia into a cheeky little alien, it’s a far more entertaining cause.

Dystonia Awareness Week 2017

It’s currently the 2017 Dystonia Awareness Week in the United Kingdom. Usually I would have kicked off awareness week on time (yesterday) with a blog post, and as has become tradition, would have been sporting some lovely green streaks in my hair.  Instead I’m currently in the hospital due to a flare up of my Dystonia; at least the timing is appropriate and they’ve given me some sexy green slipper socks (so I’m squeezing the go green awareness campaign in).

Currently The Dystonia Society UK estimates that around 70,000 people are affected by the condition, making it the third most common movement disorder in the UK, however it’s thought that the affected number of people affected may be far higher due to a lack of knowledge within the profession affecting levels of correct diagnosis. Dystonia presents in a vast amount of varying ways across all age groups which adds to the complications when it comes to diagnosing patients.

Only a few decades ago it was thought that Dystonia was caused by psychogenic roots, thankfully through giant leaps forwards in research we now know that this isn’t the case; many people will never know what triggered their condition, whilst others now know that their Dystonia is caused by either a genetic mutation or brain trauma. Sadly despite the leaps in understanding of the condition many medical professionals still mistake this as psychogenic condition and therefore do not treat the patient appropriately. 

This is one of the reasons that awareness week is so vital,  without awareness and fund rasing events research into causes and treatment options comes to a halt. At this moment in time there is no known cure for Dystonia,  but treatment can have a significant impact in a sufferers quality of life. 

Though out awareness week I’m aiming to blog daily, however this may alter depending on how well I am.

Practically Complicated In Every Way

Its been a few weeks since I last posted, and it’s mainly because I don’t have a clue where to begin. My body has been doing what it does best and excelling at being complicated resulting in very confused Doctors trying to figure out what to do with me; I’ll let you know if they ever figure that one out!

Functional is how I would describe myself at the moment. In that I can get up and dressed but it’s causing a lot of pain, and then that’s my spoons used up for the day.  I’m pretty sure sleep would make me feel a thousand times better, but between my iron tablets (I’m extremely anaemic) causing severe sickness morning and evening, spasms, palpations and generalised pain, I have found that I am lucky to get three hours of sleep a night. As most people with chronic illness know being fatigued makes everything harder and it all seems a lot worse than it probably is. This has resulted in tears quite regularly recently simply because I don’t quite know what to do to help myself.

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I’m currently 33 week pregnant, so there’s not long left to go. It reassures me to know that once baby is here I can go back on my Botox injections and safely take stronger painkillers and muscle relaxants again. Whilst I’m keeping my fingers crossed I’ll be able to avoid going back on high doses of these, it’s comforting to know that I will be able to manage my pain far better.

I’ve been in bed for three hours now, tossing and turning. My left shoulder is agony, and I have horrific nerve pain in that arm and over my right rib. I feel rather emotional, and wishing for the ever-elusive magic wand to be waved to take the pain away. I know that this flare up in the long run will be worth it, and once the baby is here I’ll forget about it. But right now, coping with a flare up of my current conditions and a flare up of my new symptoms is making things feel pretty tough.

I’m hoping that whacking my TENS unit on full and using my heat packs will help me get enough sleep tonight that tomorrow is better.

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