The Brain Fog

Due to intense brain fog, all my thoughts have been grounded until further notice!

A meme that resonated at the time and made me smile.

Following a period of significant neuropathic pain, I had succumbed to taking the drugs that had been prescribed for me, including Diazepam (Valium) and Tramadol.  Day 1 of my 5-day prescription was all about reflection as I contemplated the irony of my situation.  My unwillingness to take medication to improve my pain was in stark contrast to my acceptance of alcohol 🍷 💊💊

Having spent most of the 90’s and 2000’s working in the City I had learnt the art of drinking very well.  Initially, I sold trading and risk management software which meant I was right in the heart of the banking world.  I loved my job and I had the pleasure of working for and with some wonderful, super intelligent people.  I had disliked school, but I learnt so much during those City days.  I will be forever grateful to the people who believed in me and invested their time helping me to develop my skills and achieve my ambitions.

The City has changed now but in the 90’s the drinking culture was thought to strengthen professional relationships.  I remember days when myself and colleagues left the office for a client lunch meeting which continued throughout the afternoon and ended up with me catching the last train home.   Whilst I was compos mentis, counting alcohol units had not been on our meeting agenda.    We didn’t have mobile phones until the mid to late 90’s and we certainly didn’t have access to email.  We had no idea what was going on outside of our get together; we talked, we listened, we laughed all without the distraction of our email, Instagram, Twitter or Facebook.  There were no photos of our get together either which was probably just as well!

Acknowledging my liking of alcohol, Dr Google still seemed to favour pointing out the dangers of my concoction of drugs.   The google search revealed that taking Diazepam with Tramadol can cause dangerous effects. These can include severe drowsiness, slowed breathing, COMA, and DEATH.  I found the “coma” and “death” warnings the most disturbing.  It also went on to say that if your doctor prescribes Diazepam with Tramadol, they will monitor you closely and I wasn’t seeing much monitoring going on. 

The main observation I had on day 1 was an improvement in my pain level.  I also felt a bit different, I can’t really explain why, perhaps more relaxed and carefree.   There’s a good deal of research to suggest that “people are not addicted to alcohol or drugs, they are addicted to escaping reality” and this makes complete sense to me as the drugs were allowing me to escape from the reality of my pain.

I also concluded that my brain wasn’t as sharp.  I’m sure my analysis of myself was a bit OTT but I was attempting to carry on working and I noticed I made more mistakes in both written and verbal communication.   I haven’t had many sick days in my career, I tend to rock up whatever as work has always been a good distraction, especially when you have an overactive mind like mine.

Getting back to the subject of alcohol, I knew you shouldn’t drink while taking Diazepam but the advisory for Tramadol is much more serious.  My prescription came with an alcohol warning and Dr Google also informed me that drinking alcohol while taking Tramadol increases the risk that you will experience serious, life-threatening side effects.  Now, whilst I like a glass of wine, perhaps not as much now as in my City days, I reasoned that on this occasion, the risk was too great.

Day 2 was interesting.  My husband Jamie had organised a fund-raising dinner for the cricket club. A guest speaker had also been arranged.  This person was well known and involved in the England cricket set-up; he was arriving at our house before the dinner for cup of tea and a chat with Jamie about format of the evening ahead.   

By now I had developed a shakiness and my hands trembled quite noticeably.   I was taking so many drugs at different times of the day that Jamie had written it down for me including all timings and doses.  I set alarms on my phone so I remembered to take them.

I don’t think our guest noticed anything untoward as I mostly kept out of the way.  The only error I made was to leave my long list of drugs on the table and I had to discreetly remove it.  Had I sat where our guest was sat, I would have been able to read every word!  I didn’t carry the cups of tea either as that would have added further evidence to my drug habit.

I don’t remember much about the dinner itself even though no alcohol passed my lips.  In fact, I remembered much more from my alcohol fuelled afternoons and evenings in the City which was somewhat worrying.  My friend commented that instead of turning my head to talk to people, I turned my whole body which looked a bit strange, but I put that down to the pain in my neck and back.  Other than that, the dinner passed without incident.

On Day 3 we drove to Cornwall, we thought some walking and fresh air might help. I’m not a great passenger as I also drive from my passenger seat!  My memory of this journey was reclining my front seat and watching the world go by without making any comment whatsoever on other road users.

It was the weekend and I was looking forward to some down time.  Jamie and I love Cornwall and stay in the same village on the North Coast every time.  We also frequent a bar/restaurant, which is notorious for fun, drink fuelled evenings so visiting this bar and not drinking alcohol was going to be a challenge. 

As I sat with my elderflower water, I recalled a very funny evening on our previous visit.  Solo artists and bands perform regularly in the bar and on this particular night a fairly well-known artist was booked.  He is even more well-known now due a recent appearance on BBC question time and his subsequent Twitter interaction about “woke”.  Anyway, during his performance (and, in fact, leading up to his performance) everyone had consumed so many shots no one could remember the words, not even the artist himself and it culminated in a mass sing-along with his backing musician leading the way. Needless to say, his car was still parked on the roundabout outside the bar at 11am the next morning.

Days 4 and 5 passed in a bit of a haze and the term “brain fog” was a good way to describe my state of mind.

Scientists believe there may be a link between chronic inflammation and the cognitive impairment that people refer to as brain fog.  There is evidence to suggest that with ankylosing spondylitis, when immune flares release these things called cytokines, they send signals in the brain that get in the way of its normal functioning which can feel like “brain fog”.  I haven’t experienced this with the disease itself, but I certainly felt my brain wasn’t functioning well under the influence of my drugs.

I was pleased when my 5 days came to an end and I was unscathed and, contrary to Dr Google, I was still alive.  I came off the Diazepam and remained on Tramadol for a further 2 weeks by which time all my neuropathic pain and muscle spasms had gone and I felt normal again.  I never want to experience pain like that ever again, but I now know how to manage it and I have a process in place for any reoccurrence.  Getting back to the Nurse at the A&E, she was absolutely correct, when you live with an autoimmune disease, pain management is a crucial part of the learning process and getting it right will make a difference to your quality of life.

This had been the 1st setback since my diagnosis and my next blog will cover the 2nd, which is, by far the most serious.

Thank you for reading and sharing my story.   Don’t forget to take the (prescribed) drugs, they do work!

Until next time x

The Drugs Don’t Work

The drugs don’t work; They just make you worse

Nicely put by The Verve and featured on their third album, Urban Hymns.

I explained exactly this to the Nurse as I sat in A&E in early September 2016, but she didn’t agree.

“Of course they work, you need to learn to manage pain otherwise you will be back here every week” she replied rather sternly!

So, with my fight against Ankylosing Spondylitis underway my next mission was to learn to manage pain, and I had got off to a very bad start.

In my last blog I eluded to the fact that I have suffered 3 setbacks since my diagnosis and this is my story about the first one of those.

I had been plodding along, taking the pills I had been prescribed during my initial consultation, and I was also being assessed for the new biological medication.  I was hopeful for the future, especially if these new drugs slowed down the progress of the disease.

We had been on holiday in France where I had spent the best part of a week lying on a sunbed.  I had done little or no exercise with the exception of an “afternoon stroll” along the beach for an ice cream.  As Jamie and I run our own business, even though it was August, a quiet month for us, we still had some work to do and, sitting on my sunbed with my laptop, was not good for my posture, especially my neck.

My pain levels increased significantly during the latter part of the holiday and continued to get worse on our return home.  Sitting at my desk in the office was impossible. 

With Ankylosing Spondylitis, the pain is mainly inflammatory in the back as well as inflammation pain in the pelvis, neck, intestine, eyes, heels, and various larger joints.   However, a different type of pain, called neuropathic pain can occur in about a third of AS suffers when the nervous system is damaged or affected by disease.

I am quite good at managing the AS pain and have got used to it over the years, especially in my back, hips and neck, but this was very different, I was in agony.  If you’ve ever had an abscess on your tooth, think about how bad the nerve pain was before you visited the dentist and increase it tenfold.  It was so bad I would sit on the floor and cry.

The other problem I had was muscle spasms which is also common in AS.  According to The National Ankylosing Spondylitis Society (NAAS) the pain associated with these spasms can be sharp and intense, and people who experience them explain that they feel as if their muscles are moving beyond their control and I felt mine were in overdrive.

I also thought alot about the definition of pain during this period.  Why do some people have a higher pain threshold than others?  I don’t think I’m a wimp, and whilst I don’t like the drill at the dentist, I’ve always thought of myself as pretty tough.  I was in an car accident in 2013 on my least favourite motorway, the M25.  I was wiped out by a lorry and the car was a right off.  I was perfectly OK (apart from being a bit stiff the next day) but the nice policeman commented that he didn’t see many people as calm as I was after such an incident (he was probably just being kind).  I even managed to blag a lift back to Leatherhead in the tow truck with the damaged car on the back 😊.

Anyway, I diverse, I just wanted to demonstrate that I am generally not a wimp and cope well with difficult situations.

As a great believer in self-help I continued my research into pain.  I learnt that the word “pain” comes from the Latin “poena” meaning a fine, a penalty so I was certainly paying a gigantic fine for some misdemeanour earlier in life.  I visited my good friend Dr Google who found the British Pain Society web site which was interesting.  I thought that if I understood pain better, I could learn to deal with it more efficiently. 

I discovered that pain signals use the spinal cord and specialised nerve fibres to travel to our brain. This involves our whole body. It’s more than just a network of wires. These fibres also work to process the pain signals. All together they work like a very powerful computer and sometimes this computer can go wrong.

The messages get confused and the brain cannot understand the signals properly. It can lead to chronic or persistent pain, which can be very hard to repair; there was no reboot button and I felt my own computer system had completely blown up.

The other interesting fact I gleaned was that our feelings have an effect on our pain. If we feel angry, depressed or anxious, our pain will be worse, and I was bloody furious 😠

The opposite is also true. If we are feeling positive and happy, our pain can seem to be less. We are able to cope much better.

This demonstrated to me that pain is never “just in the mind” or “just in the body” – it is a complex mix involving our whole being and how our brain interprets the signals. This mix can change from one day to the next.

So, with all my research done, the current drugs not working and in terrible pain, I ended up at A&E with the nice nurse who told me off.   I thought that by going to A&E I could FastTrack an appointment with my Rheumatologist.  After seeing the nurse, I met with the consultant who prescribed Tramadol and Diazepam coupled with Amitriptyline.  This would address the nerve pain and muscle spasms and get me back to some sort of normality.

On leaving A&E I think my first words were “well I’m not taking those”!   

I did have some knowledge of these drugs.  Diazepam was first marketed as Valium, part of the benzodiazepine family that typically produces a calming effect.

Mother needs something today to calm her down,” goes the 1966 Rolling Stones hit “Mother’s Little Helper.” “And though she’s not really ill, there’s a little yellow pill.”

I had grown up with some exposure to the damage drugs like Valium can do.  As early as 1964, medical experts were sounding alarms about Valium’s addictive potential. What really triggered the ensuing backlash was the idea that middle-class, mainstream women were Valium’s best customers. A 1975 Vogue story, “Danger ahead! Valium—The Pill You Love Can Turn on You,” warned that the drug could result in a “far worse addiction than heroin”, which has proven to be true.

However, amongst other things, Diazepam does treat muscle spasms, inflammation and nerve disorders so I understood why it had been prescribed.

I didn’t know much about Tramadol, so my friend Dr Google stepped in to help me to understand how bad it was.  Being an opioid painkiller Tramadol is also highly addictive.  In 2014, it was classified as an illegal Class C drug; that means that on prescription it is legal, but taken illegally it is Class C.   However, there is talk of it being reclassified as a Class A drug.

I quite liked the 3rd drug on my prescription, Amitriptyline.  It’s an older drug, generally non addictive, which was previously used as an antidepressant but today is widely used to treat chronic neuropathic pain (pain due to nerve damage).  I had taken it before when I had neuralgia in my face.  However, that was 1 pill per day and my new prescription was 4 per day.  Along with all the other drugs, I had completely lost count of the number of pills I had been prescribed that were going to poison my body.

Following the A&E visit, I lasted 2 days with my stubborn hat on.  My pain levels were sky high and I realised that not only was I damaging myself but my family too.  They were worried about me and I was making it worse for them as well as for myself.  They were too kind to say so, but relieved when I came to my senses. 

So there it is, my 5-day journey into drug induced oblivion had started and my brain was like the Bermuda triangle, information went in never to be seen again.

My next blog will cover those 5 days in more detail and how, for someone like me who hated pills, coped with the effects.

Thank you for reading my story, if you take anything from this blog, please remember the doctor is always right and don’t be stubborn 😊

Until next time x

The Turning Point

Life is 10% what happens to you and 90% how you react to it;  I saw this phrase years ago and try to live by it.  With this in mind my ankylosing spondylitis journey started to take a more positive path.

The diagnosis in January 2015 and subsequent Dr Google investigations had raised a number of questions so I organised a second rheumatology consultation to seek answers.   Carefully chosen, this Consultant was heavily involved in the Faculty of Sport and Exercise Medicine which plays a critical role in improving health through physical activity.  I was optimistic about this meeting and I wanted to understand the implications of my diagnosis, the liklihood the disease would progress and how quickly.

The first sign of Ankylosing Spondylitis is found in the sacroiliac joints, the two joints that connect the spine with the pelvis.  During my initial diagnosis, I found out that mine were already fused.  While a normal sacroiliac joint has a minimal range of motion, sacroiliac joint fusion causes pain as well as difficulty with bending forward, backward, and side-to-side, all of which I experience. 

The inflammation then moves to the spine and can eventually lead to a total fusion culminating in severe disability.  During my Consultation it was agreed that I still had good flexibility, and, as only a small number of people with AS suffer from a total fusion of the spine, my Consultant thought it was unlikely I would be severely disabled.

That said, more recent MRI scans, show evidence of the disease spreading in my spine. Ankylosing spondylitis affects mainly the fibrous tissue junctions where ligaments and tendons attach to bone, called entheses and these are currently showing signs of inflammation, hopefully at tortoise pace.

As well as the reassurance regarding my flexibility, we discussed the advances in medication.  I hated taking the tablets, I often forgot or just didn’t take them, so this was good news.    There are so many side-affects when you take steroids and anti-inflammatory drugs, so I was very interested to hear of alternative solutions.

My Rheumatologist explained that new injectable Biologic medications appear to slow the progression of the disease which the anti-inflammatories don’t do.  They are expensive, available on the NHS but require an assessment period.  This was good news and I left the consultation with a goal to explore these biological drugs further.  Little did I know that this was going to be a major setback which I will talk about in future blogs.

I also came out of that consultation convinced that self-help was going to play a huge part in managing this disease.  As well as researching biological drugs, the 3 areas I was going to focus on were:-

No 1 – Exercise

I wanted to do everything I could to maintain flexibility.  I was fortunate that I have always enjoyed exercise.  I was a half decent 800m runner and enjoyed the gym.  Whilst exercise is crucial for all of us, my consultant explained that gym exercise is an important way of maintaining strength and flexibility.   It improves joint movement, posture control, muscle length and strength, lung capacity, balance, and cardiovascular fitness so it was a “no brainer” for me.

In addition to the gym, Rheumatologists agree that walking can be one of the best ways to ease pain and stiffness.  I have noticed over the years that when I walk, the pain is significantly reduced.   If Jamie and I are on a walking week, my pain levels decrease on average by about 50% which is a huge amount when you live with pain every day.

 No 2 – Weight

Keeping weight off was also part of my self-help.  I’ve always been relatively careful about my weight but it’s even more important now.  Carrying excess weight puts added stress on joints, which can aggravate ankylosing spondylitis, another good reason to maintain my 56 kilos 😊.

I don’t believe in fad diets, in fact, I think some are dangerous.  I don’t cut out any food groups either. I’ve reduced my intake of red meat and I apply the 80/20, eat well 80% of time but I don’t deny myself a burger, pizza or chips!  My friends know how much I love the blueberry muffins in Costa coffee (and the coffee!!).  In fact, I often wonder whether coffee or wine would be the most difficult to give up!

There is so much info on-line about weight maintenance, but the things that work for me are:-

  • Eat out less. … I only need to have one takeaway and a meal out in a week to put on weight
  • Prepare all meals from scratch and use whole foods, protein, fibre, and “good” fat 🍔
  • Strength train, as part of a regular exercise routine. I use weights 4 x per week for 40 minutes each session
  • Never skip meals and always eat breakfast 🍓
  • Get enough sleep. My Fitbit tells me I sleep, on average, for 7 hours 29 minutes per night.  If I don’t get sufficient sleep, I’m hungry and eat more
  • Include cardio every day. My average steps for the last 12 months were 14,764 per day. 😮

 No 3 – Diet

According to the Arthritis Foundation, a diet rich in fruits, vegetables, whole grains, and omega-3 foods like fatty fish can help reduce inflammation.  If you work full time as I do, you need to be very organised to cook food from scratch and not rely on “ready meals”.   As “Count Dracula” reminded me in a recent televised adaptation, “you are what you eat” and I believe this to be true.  Your food choices affect everything, your overall health, the condition of your hair, your skin, the way you feel, the list is endless… 

I also drink at least 2.5 litres of water a day and try to cut out alcohol during the week (“try being the operative word!”).   Some weeks are more successful than others. 🍷🍷.   

I’ll cover more about my lifestyle in later blogs as I believe my strict regime is helping me live a better life.  Everyone has a choice and I can choose to wallow in self-pity or try to make things better through exercise, diet and weight management.   It’s sometimes difficult to motivate myself to exercise, especially on high pain days or during flare-ups.  BUT, and here’s the thing, it really does help, even on days when the side effects of AS kick in such as chronic fatigue, a topic that’s so big, it needs its own blog.

With my journey to self-help underway, my fight against Ankylosing Spondylitis had started.  I have since acquired 3 more autoimmune visitors, just for good measure – Purpura, Raynaud’s and Ulcerative Colitis and, as I eluded to earlier, there were some major hurdles along the way, one of which I will discuss in my next blog.

My body may be experiencing technical difficulties, but I live my life in constant re-boot mode.

Thank you for reading my story, until next time xx

Dr Google

Following my diagnosis and follow-up consultation, Dr Google became my focal point.

“Don’t confuse a Google search with your Consultant’s medical degree” a great sentiment and one I should have abided by.  However,  I didn’t, and Dr. Google became my worst enemy!

Everything that was ever written about Ankylosing Spondylitis that had a negative connotation, I could recite.  The first 3 months were quite tough, coming to terms with a diagnosis for a condition you had never heard of and can’t even spell was difficult.    It doesn’t sound very trendy either, “Ankylosing Spondylitis”, it created a vision in my mind of twisted, knotted bones and made me think of a dead tree.

Dr Google convinced me I would suffer from every symptom associated with Ankylosing Spondylitis. The ones that worried me the most included:-

  • Iritis – I had already had Iritis 3 times so I was convinced I would end up blind and most certainly in my right eye
  • Damage and restricted movement of my muscles and bones as the disease progresses. With some people it can result in severe disability and very limited movement in the spine and “some people” was obviously me.
  • Chronic fatigue. Dr Google told me that this was caused by inflammatory markers called cytokines (whatever those are).  Apparently, they are circulating in my body and fatigue is one of the more common symptoms of AS. Tiredness may get worse because the body is using a lot of its energy to keep this inflammation at bay. The effect can leave you feeling drained of energy.  I was pretty drained already, so I envisaged this getting worse.
  • Heart problems – “some people” (definitely ME) are at an increased risk of developing heart related issues.
  • Osteoporosis is common in people with AS. As if my bones weren’t messed up already, Osteoporosis makes them less dense than normal. I guess my age was also a factor so I was bound to get that!
  • Intestinal tract diseases
  • Cauda Equina Syndrome (common in people who have AS) and can lead to paralysis and other severe issues. The condition usually requires emergency surgery; GREAT, look forward to that one!
  • Amyloidosis – caused by the build-up of a protein called amyloid in the organs, amyloidosis can cause symptoms such as weight loss, and tiredness. Well at least the weight loss will balance out the weight gain from the medication!
  • Nerve damage, such as tingling in the hands and feet
  • Raynaud’s phenonomen
  • Purpura (forget wearing sleeveless dresses) and more on Purpura in future blogs.
  • The list goes on………

Dr Google also turns up at night when you’re asleep to remind you about them just in case you’ve forgotten.  I have since been diagnosed with some of the above, but not nearly as bad as my imagination had led me to believe.

In addition to Dr Google, I also had problems at work.  At the time of diagnosis, my husband Jamie and I were 5 years into running our own business.  One of the reasons I had been referred to rheumatology was a deep pain in my lower back.  Sitting at my desk had become very painful but, as my job involved sitting for long periods of the day, it was becoming a challenge.  I had to rethink my entire office time to stop me constantly whinging about the pain.

Taking the prescribed medication was also difficult to accept.  I did learn quickly that the yellow tablets, Sulphasalazine, stained our light oak dining table when you spilled water over them.  Dr Google was also very helpful highlighting their side effects too, particularly the weight gain and hair loss.

Those 3 months were not great.  It was also winter; my least favourite season and I have since observed that my pain is worse during the colder months.  Often in the summer I am pain free for 2-3 months and I don’t get Raynaud’s which is also a bonus.

Eventually I concluded that “Dr Google” wasn’t doing me any favours and I needed to speak to a professional to source answers to the questions my “extensive” research had uncovered.  Before I move on, I want to point out that I am very proud of our NHS and I am extremely grateful for the care I receive today.  My Consultant Rheumatologist at the Royal Surrey Hospital is superb; however, they are time constrained which I completely understand so I decided to go for a one-off private consultation.   With a private appointment, I felt I could take my time and go through my questions slowly to make sure I understood the implications.

Jamie did all the research and found a superb match, a practising Consultant in Rheumatology who also worked at the Defence Medical Rehabilitation Centre, Headley Court, Epsom.   Amongst other things, he helped our Army personnel who had serious rheumatology challenges cope with army life. 

Exercise has always been a big deal to me as it helped with my pain.  The Rheumatologist Jamie found was also heavily involved with the Faculty of Sport and Exercise Medicine UK which has a critical role to play in improving the health of the nation through physical activity.   For me, the fact that The Faculty concentrated on setting the highest standards for Exercise Medicine, Musculoskeletal Medicine and all aspects of Sport Medicine was a big plus.   I was convinced that exercise, a strong mental attitude and a good diet were going to help me more than Dr Google and tablets, but I needed confirmation.

My next blog will cover the consultation and the start of my journey to self-help….