Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Health Update

Happy New Year gang (can I still say that in the middle of February? No, I can’t can I…) Well then, Happy February gang. I’ve sort of neglected this blog so far this year, as my brain has been filled with a ridiculous amount of other things, but I thought it was about time I updated you all on what is going on in my life and my health.

At the beginning of January I had another follow up appointment with Mr M, along with another X-Ray and I received the news that my bone graft is now fully healed and my quads were beginning to bulk back up. No more X-rays are needed and providing everything is still going well when I speak to Mr M in March/April then I will be officially discharged from Orthopaedics (well until the time comes for Mr M to fix my left knee, but we shall cross that bridge when we come to it). Rehab is going insanely well and I still struggle to believe just how strong my knee is now, considering that for the last 14 years I haven’t been able to do the most basic things, such as walking without my kneecap subluxing, and now I’ve been doing squats with no pain or instability.

The day after my appointment I started back at work for the first time in 4 months. I was on a strict phased return so was only allowed to do a few mornings a week for the first 2 weeks, whilst I slowly built up my strength and my working hours in turn. As of the beginning of February I am now back at work full time from home (until I’m fully vaccinated against Covid-19). As stressful as it is being back at work full time and not being able to go into the office to do my paperwork etc. it is so nice to be back and to feel some sense of normality whilst everything else crumbles around me.

Rewinding back to December 2020, I was diagnosed with Degenerative Disc Disease in my Thoracic Spine and Osteoarthritis in my Cervical Spine. Whilst I was completely taken aback when I was told (probably because I am so used to being told the pain is in my head), it all makes sense and explains why I have had so much pain in my back for the last few years. Since then, I have experienced multiple episodes of severe pain at the base of my skull/top of my spine with pressure in my head, which has become increasingly concerning as no matter how many pain meds I take, nothing relieves it and I end up having to wear a neck collar for days on end just to relieve the feeling of instability. This could very well just be from the osteoarthritis, but due to the fact EDS has so many comorbidities with very similar symptoms to those that I have experienced, I made the decision to go and see a Neurosurgeon who specialises in back and neck pain to get everything checked out properly and hopefully get a management plan in place (I will do a separate update once I have seen him and know what is going on).

Right, back to present day… On Thursday I was called by the hospital in London and told that they could move my Tilt Table Test to today rather than the end of May, which of course I said yes to (mainly because it is so rare for this sort of thing to happen).

The actual Tilt Test was fine, I was honestly expecting it to be horrific, but my Consultant was so incredible and spent the whole time talking me through everything that was happening and why it was happening that all of my usual medical test induced anxiety dissipated. What I wasn’t expecting was to come out of that test/appointment with quite as much information as I received 🤯. It was definitely an onslaught of info, so I am extremely grateful that my Consultant wrote my clinic letter whilst I was there and gave it to me before I left. The end result of the test is that I have officially been diagnosed with not only POTS (Postural Orthostatic Tachycardia Syndrome), but also Inappropriate Sinus Tachycardia Syndrome (IST). I was prepared to be diagnosed with at least one of those as I’ve been told for ages that I probably had one of them, and I was diagnosed with Dysautonomia in August and told that I needed further testing to determine which one.

The onslaught of information started when I was told that my adrenaline levels are sky high due to my body being stuck in fight mode, and as a result there is s significant lack of blood flow to my brain during the day. I’m still learning what all of this means but basically my parasympathetic nervous system (the part of your autonomic nervous sytem that is responsible for relaxation) is barely working and my sympathetic nervous system (the part that controls your involuntary reactions to danger and stressful situations) is working in overdrive and therefore impacting my heart rate negatively. I was told that my brain doesn’t work properly in the day and therefore it takes all of my energy to do simple tasks that involve thinking, and it isn’t until the evening when my body becomes so exhausted from fighting that my brain finally gets the blood flow it needs to be productive (so basically I am nocturnal…🦉).

So, what exactly is POTS and IST?

POTS is an abnormality of the Autonomic Nervous System, and therefore it affects all of the bodily functions that we never have to think about. When a healthy individual stands up, their blood vessels narrow, heart rate increases a small amount and blood supply to both the heart and the brain are maintained. However, in POTS, this doesn’t work properly and causes an excessive rise in heart rate, increased adrenaline and a change in the blood flow to the brain. Orthostatic symptoms include; palpitations, presyncope (near-fainting), syncope (fainting), chest pain, shakiness, chest pain and excessive sweating. There is then a long list of other symptoms which also occur with POTS. There is no cure, but symptoms can be managed to an extent with medication and lifestyle changes.

IST produces similar symptoms to POTS but is caused by your heart rather than your brain and the symptoms happen as a result of different things. Sinus rhythm is the normal rhythm of your heart and when your heart beats faster in this rhythm it is called Sinus Tachycardia. This is normally causes by things such as intense exercise, anxiety, some medication, alcohol, caffeine etc. However, sometimes it occurs for absolutely no real reason and that is when it becomes Inappropriate Sinus Tachycardia. With IST, you normally have a heart rate of over 100bpm at rest, with an average heart rate of over 90bpm. However, some people have a slightly lower heart rate at rest, which then shoots up immediately after the smallest movement. I sit somewhere in between these two, as my average heart rate is always above 90bpm, but whilst some days my heart rate is consistently above 100bpm at rest, other days it sits around 80bpm and then shoots straight up to the hundreds as soon as I move. The main symptoms caused by IST include; difficulty exercising, shortness of breath and struggling to catch your breath, dizziness and a headache. Again there is no cure, but management included medication and avoidance of triggers such as caffeine and alcohol.

So, what does this all mean and what are the next steps?

At the moment I don’t have a full management plan in place because there are still tests that my Specialist wants to run due to a few alarming things showing up during my test. The next step is to complete a 24hr urine test (yes you read that right, 24 hours…) in order to check for a potential tumour on my adrenal glands, and a full blood work up to check all of my levels and ensure they are okay before we start introducing more medication. My Specialist also wants me to have 24hr blood pressure and heart rate monitoring so that we can figure out exact triggers and then work them into a management plan. At the moment my management plan includes avoiding caffeine (quite possibly the worst thing you can say to a coffee lover), alcohol and excess sugar (similar to the caffeine thing, I need chocolate to survive), and then increase my salt intake to 6-10g a day 🧂 (if you have any ideas how to do this, then I am all ears). Along with this, I’ve been told I can no longer do any form of moderate or intense exercise and need to stick to mindfulness exercise only, because my body won’t be able to cope if my heart rate is continously going through the roof whilst exercising. Quite honestly it was this news that hit me the hardest, because if you follow me on instagram then you will know that since starting rehab for my knee, I have found an absolute love of exercise, particularly strength workouts. Whilst I know it’s for the best as I do actually want to live long enough to be a little old lady one who causes havoc in the nursing home 😂 and not end up having a stress induced heart attack, I am devastated.

So all in all, the last 3 months have seen 4 more diagnoses be added to my ever-growing list (I’ve always said I’m a pro at collecting incurable conditions 💁🏼‍♀️) and the chronic illness grief/acceptance cycle has started all over again, whilst I adapt to my new normal.

I have a huge amount of work ahead of me to try and adjust to my new life and reduce stress triggers, but I have the best support system I could ever ask for behind me, so I know I’ll get there.

I’m not going to promise any regular blog posts as quite frankly my brain can’t handle it at the moment, but I update my instagram regularly so if you want to know what is happening, head over there.

Lauren x