When Medication Messes With Your Mind

Warning: This article discusses mental health issues (medication side effect).

If you are feeling depressed, down or anxious the following support lines are available in Australia.

WHERE have I been? I had an unpleasant reaction to a medication prescribed to treat my autoimmune arthritis. It has taken me a while to feel in a position to write ANYTHING (other than a 280 character Tweet).

My usual policy is not to name medications in my articles, simply because everyone’s experiences are very different with these medications. I don’t want anyone to think negatively of a medication because of my specific experience. However, in my last article I did name the medication I had recently started, methotrexate.

I had an unexpected reaction: both my dermatologist and gastroenterologist prescribe it for conditions in their specific areas of expertise and have never had any of their patients experience a similar reaction. I did locate a study reported on Science Direct that looked at three DMARDS and mental health in rheumatoid arthritis patients: “Anxiety, depression and suicidal ideation in patients with rheumatoid arthritis in use of methotrexate, hydroxychloroquine, leflunomide and biological drugs“. Perhaps there are condition factors at play, but as a patient going through the awfulness, that is really, at the time, irrelevant.

There is no doubt (and plenty of supporting documentation out there) that chronic illnesses can lead to, or indeed have, depression as a co-morbidity.  I’m also well aware and have written before about the importance of maintaining our mental health, so I always ensure I am taking the recommended actions to minimise the risk for myself. This was different.

I thought the first couple of weeks were OK – not fantastic, but OK. I went downhill after that. I won’t cover the full timeline in detail, suffice to say it progressively worsened. In the earlier weeks, there were days when I would feel the cloud lift, could almost set my watch by it, which made me think my body was simply adjusting to the new medication and all would be fine. I took the fifth tablet on the Friday as scheduled (weekly tablet). By the following Monday (three days later) I was leaning against the bathroom hand basin feeling completely unable to shower, do my hair, clean my teeth. Going to work just seemed beyond the realms of possibility. I’d already had time off, waiting for this medication to kick in, I didn’t want to take more time off. I didn’t want to crawl back into bed and hide under the doona, I wanted to crawl under the bed and stay there. It was awful. I had also been crying at the drop of a hat building up to this crescendo.

I dragged myself to work that day, I’m not sure how. The first stop I made was to my wonderful pharmacist. I explained how I felt and asked could this be the medication. Call your prescribing doctor was his immediate answer. So I did. Got an appointment for the Friday of that week. This simple action did make me feel slightly better, I’d done something, I’d taken action.

By this point it was as if there were two people in my head. One, the logical, practical, ex-science student, educated systems professional saying “this is a side effect, hang in there, there is help available”. One of my other doctors, in just general discussion, has suggested that was quite likely part of my problem – I was too logical about it and should have pulled the plug earlier! He thought he’d possibly be the same in a similar situation, which made me feel better about my stubborn perseverance! The second person in my head was the emotional or psychological me just wanting to crawl up into a ball and hide from the world. At times it was like the two were at war.

Did I feel “at risk” at any stage? I don’t believe so, but the logical me kicks in again now when answering that question and says “Can you be really sure? Your mind was not yours at the time.” The best I can say is while I felt, at the worst of it, that I was drowning in some sort of deep, dark, oxygen-depleting substance, at some level I still wanted to rescue myself, to get out of the quagmire.

My prescribing specialist took me off the medication immediately, prescribed another DMARD (this is my fourth since early 2015) and told me to do a two week wash out of methotrexate before starting the new medication. He said if I didn’t feel better in two weeks to see someone (i.e. a mental health professional). I actually did a three week wash out because I had an unrelated day procedure looming in another specialty and he asked me to wait an extra week. Oh, the juggling of it all.

By the end of the following week, (two weeks having transpired since last tablet taken) I was feeling perfectly normal psychologically. Or should I say, normal for me.

Another of my specialists asked why I had been taken off the medication. My response was this.

There is a difference between wanting to die and not wanting to live, but it is a very fine line.” The former requires taking an action, the latter does not. I had at times felt the latter.

In my particular case not being able to exercise, due to the swollen foot and very grumpy shoulder, added to my “downer”. The two physical flares together made both gym and swimming activity inadvisable. I felt defeated. Exercise is not only my primary pain management tool, it is also a great mood lifter. Other clinical benefits are helping control weight and strengthening muscles, thereby protecting and supporting joints. Without exercise I felt I was losing on all fronts. I felt I was not in control of anything.

Mentally/psychologically I’m now fine, but I will never persevere as long again if I have another similar reaction to a future medication. I am aware this is the second time medication has messed with my mind, the first time being when I lost my sense of direction completely. At the time, I didn’t link that symptom to the medication I was on: I thought perhaps it was age related or similar. I’d even asked my then GP was there a test for early-onset Alzheimers as it was so debilitating and I was concerned maybe I shouldn’t be driving.

I remember being in my daughter’s car as she drove me to an appointment, fully functional GPS, very good driver (I taught her, so OF COURSE she is good). I was CONVINCED we were driving in the wrong direction. One week after stopping that particular medication (for other reasons), my sense of direction miraculously reappeared and I’ve had no problem since. No, correlation does not mean causation, but in this case, given I’d never had the problem before and haven’t had it since, I’m leaning towards it being a side effect. With two incidents now, may this indicate I have a predisposition, genetic or otherwise, for these medications to mess with my mind? I have no answer, but I’ll be super cautious from now on.

How am I, right now, physically? It is going to take up to eight weeks for the new DMARD to fully kick in; I’m in my second week. In the meantime I’m supplementing with prednisolone and the occasional Celebrex. I’ve started SLOWLY tapering off the prednisolone, but it will take time. I’m back swimming and gyming, more gently/lower intensity than previously at this point, but I’ll build back up. High reps, low weights for the moment. If I have to nominate a problem body part, it is feet and ankles which have never been a problem for me in the past. New challenges!

We are constantly learning on this chronic illness journey. For each one of us the lessons are different. This has been a difficult couple of months for me, without a doubt. My heart goes out to those people who suffer clinical depression, as I suspect what I experienced, albeit for a relatively short period, may be similar. I am so very grateful my solution was simply to remove a medication and thereby quickly regain my mental health.

On a good note, methotrexate was fantastic for my skin – the primary reason for the medication change! The UV B light therapy had worked wonders, but progress seemed to have stalled before the point of final perfection was reached. There was a small rough patch on my chest I was using as a progress gauge which had stopped reducing in circumference – a couple of weeks on methotrexate and that patch had completely resolved.

I cannot sufficiently thank my medical team, especially my GPs who again went above and beyond, providing additional support at very short notice. My daughter took a tearful phone call from me while she was still at work and spent a Sunday with me for which I was extremely grateful. I should also thank my Twitter friends for putting up with me – they didn’t know what was happening, but in some ways Twitter was a bit of a lifeline – it helped take me out of the darkness, with non-medical topics to try to focus on. I was on there WAY TOO MUCH!

I have deliberately written this article in “patient voice”. Not just for fellow-patients but for any health professionals that may wander past. None of us are alone. I realise I am taking a personal risk in publishing this: we are generally not a society that deals with chronic illness terribly well. We do much better with acute illness, where people get better. I still work in the “real world”, so publicly disclosing vulnerability can carry a price. Yet if we continue to hide ourselves away, to be silent about the challenges we face, we will not encourage change. I’m taking that risk.

If you notice a detrimental change in yourself that just doesn’t seem right, don’t try to soldier on without consulting your health professionals. It isn’t always new medications either, sometimes problems can arise after considerable time, for example two years. A special word of warning to those of us who live alone. We don’t always recognise what is happening to ourselves, especially if the change creeps up on us. We don’t have others to give us feedback. Looking back now, this was a little insidious. The accelerator really pushed down in that last week. We have to be extra vigilant, I think.

Time will of course be the judge, but hopefully I’m back on an upward path. All this because I wanted my skin back!

Footnote: This article is the third in a series detailing my medication change experiences. The first two articles are:

chronic conditions care courage consistency coaching

Care, Consistency, Courage and Coaching

Chronic Conditions

Care, consistency, courage and coaching are my “4 Cs” of chronic condition management.

Care

There are different types of care. Top of the list is great medical care. You must have a good relationship with your primary care provider (general practitioner, GP). I’m not suggesting you be family friends who go out for dinner (that could be difficult) but you should feel comfortable that your GP “gets” you and that you trust their level of care. This is the medical professional on your team that herds the cats (your specialists) and keeps the information flowing, in a sense the gate-keeper.

Self-care is extremely important. Self-care isn’t all bubble baths and scented candles, although those are nice. Self-care includes doing the things you MUST do to maximise your health, minimise your pain. Making the time to do stretches, walk, swim, lift weights, sleep, eat well: “doing the hard yards” as my father would say. Yes, the other sort of self-care, the time-out, rest, relax: also very important.

Mental health care is extremely important. As I have written about that in “We Need Mental Health as well as Physical Health, I won’t say more here. Reducing stress is part of mental health care.

Being careful is also a form of care. One example I have written about before is changing exercises where necessary. My own example is I no longer do dumbbell chest press because getting off the bench irritates my spine.

Being careful with our body weight is important – for many, weight gain can mean increased pain levels.

breakfast
Breakfast

Consistency

Consistency is paramount. When we were healthy, our bodies could recover from a week or two of no exercise, a night on the booze or day of crap food. Sure, we may have suffered a hangover or the scales may have jumped a kilogram, but we easily recovered from the damage.

Once we have a chronic condition/illness/disease not only are our bodies not as resilient, we are likely on medications that, while doing very good things for us, may also compromise other aspects of our “internal workings”. My own example is my rheumatoid arthritis (RA) medication suppresses my immune system – logical when you think about it, of course, given RA is an autoimmune condition, my own immune system attacking me. This means I have to be super careful not to catch bugs/viruses, as I recently did. I ended up in ED with what felt like a ping-pong ball in my throat.

Exercise, such as stretching and resistance training, will stop your body deconditioning and greatly assist with pain management. However, the gains we make can be lost VERY quickly once our bodies are unwell. Consistency is vital to ensure we maintain our gains and keep building on our achievements. I have discussed exercise in more detail in Doctors and Exercise, so please click that link for a more comprehensive presentation about the importance of exercise.

de-conditioning

During a consultation with my endocrinologist he asked, “Do you take your meds?” Frankly, I was shocked – what a strange thing to ask, I thought, of course I take my medications! He asked because my thyroid was misbehaving again and my blood tests were not within the reference range – again. Clearly some patients don’t take their medications as prescribed.

Most medications for chronic conditions require consistency to be effective. If you feel the dose or the medication isn’t working as it should, TALK TO THE SPECIALIST before changing anything. You may do more harm than good. If the problem is remembering, set alarms in your phone. Some medications can take three or more months to reach the required level of effectiveness.

Be consistent. With medications, exercise, diet, rest, sleep, hydration.

consistent exercise
Consistent daily steps

Even if you have to dance to get there!

Courage

Yes, courage. It takes courage to start AND to keep up the fight. “The cave you fear to enter holds the treasure you seek”. The treasure is maintaining quality of life for as long as possible. For some, the cave is MOVEMENT! It can be hard to think about movement when we are in pain. Or we feel we can’t “keep up” in the gym. Today is my swimming day. The predicted high is 13 Celsius. Do I REALLY want to get into my bathers and hit the pool, or would I prefer chocolate cake and a nip of Bailey’s Irish Cream? Consistency! Courage! Just do it!

leg press

The benefits are worth it. I have avoided a knee replacement and radiofrequency denervation of the lumber spine. Yes, I MAY need both some time in the future (distant future, I hope) but for the moment, I’m good. I’m on no pain medications.

Four years ago I started with four x 5 minute walks a day.

Now a gym session looks like this:

  • 4 sets leg press
  • 3 sets chest press
  • 3 sets shoulder press
  • 1 set body weight squats
  • 3 sets Smith Machine squats
  • 3 sets tricep extensions
  • 3 sets bicep curls
  • 3 sets lat pulldowns
  • 3 sets leg extensions
  • 3 sets pec dec
  • 8 minutes on the rowing machine

I got VERY annoyed recently when I lost muscle strength and had to drop my leg press weight down from 160 kgs. While we still don’t have a medical explanation, I am building back up again, so perhaps it was just a temporary glitch. We have temporary glitches.

I didn’t get to where I am now without care, consistency and courage.

Coaching

Professional athletes all have coaches. They have goals. WE also have goals (hopefully SMART goals)!

Perhaps we need to look at ourselves as endurance QOLs –  Quality of Life is the goal we strive for, not necessarily running 3,100 kilometres in 45 days! Our mental challenge can be just as extreme, even if our physical achievements are not. 8 Steps to Retain/Regain Quality of Life

People are all different, conditions vary greatly. Even so, the sooner you start managing your condition instead of your condition managing you, the better your chances of retaining your quality of life for as long as possible.

Sometimes all that is needed is help to get started. Sometimes a patient may prefer longer term support and encouragement.

Coaching helps the chronic condition patient take control. There is a fifth “C” – Control!

Too often patients feel they are “OK for the moment, I’ll worry about all this later” (when my job is not so stressful/the kids are older/the house is paid off). My advice is don’t wait. Start now to protect your future.

Contact me for a confidential chat as a starting point.

Note this article is intended for chronic condition patients who have a medical clearance or medical advice to exercise. This can be at any level from beginner.

too much chocolate is not self-care

We Need Mental Health as well as Physical Health

As a movement/exercise trainer I write a lot about benefits of physical movement for chronic illness. It is my area of expertise. I am well aware that mental health will affect clients’ motivation to enhance their physical health. Recently I wrote about the financial aspects. As I am a CPA, I’m qualified to write about dollars too.

Today I take a look at mental health. I am not qualified in the mental health field, therefore I refer to those who are. My own experiences may put the advice into context and help you consider whether some support may be helpful or life adjustments may be necessary for your situation.

Queensland Health published 5 steps for making your mental health a priority in 2018 (and beyond) earlier this month. I’m going to talk about those 5 steps in the context of having a chronic condition.

Understand what mental health actually is

This is important. If we don’t have an understanding of what mental health actually is, we won’t recognise when we need support. We already have a physical condition: diabetes, lupus, fibromyalgia, inflammatory arthritis…..the list is very long. Maybe we have more than one condition to manage. Our life may have slowly or suddenly changed and those changes can bring with them depression or anxiety. There can be a sense of loss if a patient has to reduce working hours or give up work entirely. The financial concerns resulting from that life change can bring considerable stress. There are times, especially in the early days, when it can feel like a downward spiral.

I remember what it was like in the early days, when I was not yet on medication as the specialists investigated and the diagnostic process chugged along. It. Was. Tough. I did have faith there was light at the end of the tunnel, but that light seemed to be a tiny speck in the distance at times. Now I can leg press 160 kg – that is a long way from the days when I walked five minutes, three times a day. Not only am I physically healthier, I am also mentally stronger. I feel in control, which I certainly didn’t in late 2014.

Just as our physical health can affect our mental health, the reverse is also true: our mental health can affect our physical health. If we reach a point where we feel there is no hope, then we may stop doing the very physical things that would give us hope and a better quality of life. Sometimes it really is the old chicken or the egg question.

Being mentally well doesn’t mean you don’t experience ‘negative’ emotions or reactions, like sadness, anger, grief or frustration. Similarly, being mentally unwell doesn’t necessarily mean that you can’t experience emotions like happiness or excitement, go to work or school, or have relationships.

Having mental wellbeing means being able to experience all the ups and downs of life and cope with them in a psychologically and emotionally healthy way.

Please read the full article for the clinical definitions and a broader explanation of what constitutes mental wellness.

Cultivate mental wellness

For physically healthy people, this may not be something they have to think about too much. There are mountains of research showing that physical exercise helps maintain mental health. Healthy people are out there playing tennis, running, cycling, gyming and swimming with gusto. Us? Maybe not so much, at least not at first.

We can usually eat right. Sleeping right may be affected by pain.

Another important aspect is finding our purpose – but this may just have been taken away from us: we have to find a new one. If we loved our job, for example, and can no longer do that job, this may affect our sense of purposefulness.

You can find more resources about looking after your mental health on the Head to Health website. This Australian Government website focuses on four broad aspects of life that can impact your mental wellbeing: physical healthconnectednesspurposeful activity, and feeling safe, stable and secure.

Find ways to decrease stress

This is something I have written about in the past.

Queensland Health says:

Stress can impact anyone and can affect your mental and physical wellbeing. While a little bit of stress can be a good thing, helping you to focus and perform well under pressure, ongoing stress is not healthy for your body or mind.

Let’s not beat around the bush – finding out we have a chronic disease IS STRESSFUL! Apart from the medical advice that stress may cause condition flares, which we don’t want, stress can impact our mental health and the vicious cycle starts. It is important for physically healthy people to manage their stress: it is absolutely vital for chronic disease patients to manage stress.

Take time out

Strongly recommend this one. With caution. For anyone with a chronic condition, self-care is critical. Brianna Wiest covers this well in This Is What ‘Self-Care’ REALLY Means, Because It’s Not All Salt Baths And Chocolate Cake. For me, I might want it to be all hair appointments and manicures. Although I did have 20 grams of Lindt chocolate today.

True self-care is not salt baths and chocolate cake, it is making the choice to build a life you don’t need to regularly escape from.

And that often takes doing the thing you least want to do.

So while we do need to take time out (have that manicure, watch a favourite TV program or enjoy a nice glass of wine), because we have to avoid the Boom Bust cycle, we need to be careful not to take so much time out that we sacrifice our very necessary self-care. We can no longer do as much in any given day as we could in the past. We can’t catch up tomorrow, necessarily.

Get help when needed

YES YES YES!!! From my personal experience I recommend talking to your GP early if you feel you are experiencing difficulty coping. Support such as Mental Health Care Plans are available under certain circumstances to help with the costs. Don’t keep soldiering on, support is out there, use it. I find just being able to vent in a safe environment immensely beneficial. Being proactive about our mental wellness is very important at any time: once we are a chronic disease patient it is absolutely critical.

Signs it’s time to seek professional help include:

  • you’ve been feeling sad, down, angry, depressed, numb or generally ‘not yourself’ all the time, for two weeks or more
  • the way you’re feeling is affecting your ability to cope at work, school or in your relationships.

You can start by talking to your GP, a trusted friend or family member who is a good listener, or by calling a helpline like beyondblue or Lifeline. If it’s an emergency and you think your life or someone else’s life is in danger, always call Triple Zero (000) for an ambulance.

Remember that only a trained health professional can diagnose you with a mental illness and offer treatment services.

Other Resources

“You can’t stop the waves
But you can learn to surf.” ~ Jon Kabat-Zinn

The Daily Manic – corporate change consultant and advisor Jayne was diagnosed with life changing illness at the age of 44. She now uses her change management skills to help people slow down their lives, whether that be for reasons of illness or simply because they want to slow down.