Category Archives: Health

Multiple medications coming out from a pot

Trying new medication update

This blog follows on from one I wrote recently about Weight up the benefits of trying new medication for the severe chronic neck, back, shoulder and arm pain I experience due to spondylosis and fibromyalgia. Short story – it didn’t go well, I was that 1 in 10 who experienced side effects.

Longer story

The medications I tried were a muscle relaxant and an anti-epileptic drug to treat my neuropathic pain. Both of these had a fairly similar side effect profile but had been recommended by my consultant at the pain clinic so I was hopeful.

I titrated both medications up each week and started to feel some benefit. I kept a really detailed diary of my symptoms and possible side effects. Given that the side effects are really similar to the symptoms I suffer day-to-day, it’s very difficult to tell the difference but I had a couple of awful experiences.

At the highest doses I reached I actually started to feel so dizzy I fell over a couple of times and was so sleepy during the day I was falling asleep at work. I considered pushing through because sometimes side effects like this only last a short time and wear off but I couldn’t function so I reduced the dose and realised that at the lower dose, I wasn’t feeling any pain killing benefit.

The worst adverse effect I had was when I had a teeny-tiny glass of wine, I experienced feeling drunk for the first time in my life! Let’s just say, my mind-body connection wasn’t functioning as it should – not something I will ever repeat willingly.

It’s really difficult to have experienced such an adverse reaction like this. Before I had a drink I didn’t feel particularly sleepy so thought a tiny glass would be ok. I rarely drink so I’m always carefully not to have very much. Within about half an hour I was fast asleep and as we were at a friend’s house, my husband had to help me home as I could barely walk. Fortunately, my friends were incredibly understanding and it was a simple case of sleeping off the effect.

It just shows trying medication isn’t as straight forward as thinking does it work or not? We put an extraordinary amount of trust in the pharmaceutical company to ensure they’re safe. These medications have been put under scrutiny in medical trials but new side effects can occur. (Interacting with alcohol is not a new side effect but a strong reaction like this will be very unusual.)

It feels like such a balancing act for me with multiple medical conditions to consider. I was worried about weight gain in my last blog. That turned out not to be a problem – instead, I was plagued with more fatigue, feeling unsteady, nausea and sleepiness that made daily functioning impossible. The trickiest conundrum was working out whether the symptoms were side effects of my fibro playing up?! The only way I knew in the end was that the symptoms improved when I reduced the medication. (But even then, it still could have been a co-incidence because my fibro symptoms wax and wane!) It almost felt like a game but there was absolutely no element of fun!

At the follow-up appointment my GP booked I explained that these new medications had been unsuccessful and I would prefer to be on higher dose opioids despite the bad press they get. She supported my decision because she could see how much pain I was in and having tried the less conventional medications, she agreed, paracetamol and opioids would be a valid choice for me.

There’s a lot of hype, particularly in the US about “the opioid crisis” because of their addictive properties but used correctly, under supervision, my GP believes I’m not in an danger. The side effects are also a known entity and we can manage them.

With the medication I take to prevent my migraines, it appears to work for about a week each time I increased it but then I would stop feeling the benefits. After increasing and increasing…at last, I seem to have reached a beneficial dose (and no noticeable side effects); I’ve only had 1 migraine in the last 2+ weeks… This is a massive improvement on getting them everyday!

What’s in a label?

Some say labels are just for cans and boxes but why do people search for years for a label for their illness or disability? Why does it feel so important?

When a diagnosis is finally reached, there seems to be a sense of relief, maybe even satisfaction! Almost “I told you so!” Sadly, before this point, people worry others think they’re faking or exaggerating their symptoms. Without a diagnosis you’re just a list of problems. Before a diagnosis, phrases like “it’s all in your head” are used and the patient feels like no one believes them. Doctor after doctor has said “hum, I’m not sure; you say you feel like this, but the tests say you don’t.”

Finally, the label means validation.

Fibromyalgia is one of those illnesses that takes years to diagnose and people feel they’re not being believed, they’re pushed from pillar to post as their symptoms get worse.

The way I was given the diagnosis of fibromyalgia couldn’t have been further from what I was hoping. It’s meant to be a diagnosis of exclusion. Ideally, you would hear “We’ve done all the tests to rule out these illnesses x,y,z… and they’ve all come back clear, this is good news. (Pause.) This means, we’ve come to the conclusion, it’s fibromyalgia. It’s good, we now know what it is because we can begin to manage it. The way your symptoms are presenting (because they present differently for each individual) we’re suggesting these treatment options…”

In my experience, there are illnesses they haven’t excluded, numerous tests they haven’t done. And the news was delivered, while prodding the joints in my hand (for no reason I could understand) “Well (sigh) it could be fibromyalgia”. That’s it, we have nothing to offer. “We might have a leaflet in the waiting room you could pick up on your way out…” they’d run out of leaflets…

Oh well, ignore how I got the label, what mattered was, I had it.

Fortunately, once I had the label, I was then able to find treatment options myself; I found a clinic in London (who only see people with a diagnosis) to get some advice; I had some group session with a physio and an OT and feel I can pro-actively manage the illness myself.

Reactive vs pro-active management

Understanding without a label

“But as long as we understand the difficulties, we just need to make sure individuals get the support they need.” Said a well-meaning nurse to me recently.

Understanding difficulties someone has and the support they need takes time and effort most people are unwilling to give. Understanding what an individual really needs takes knowledge, skills, expertise and often wisdom that most people just don’t have.

Why a label matters

With a diagnosis you get treatment options – before the point of diagnosis you’re crawling down a corridor of shut doors. At the point of diagnosis, a door finally opens. You’re finally allowed to enter the world of your given disorder and explore the “options”. All you’ve every wanted are “options”, that magical word! There may not be many, but before now, there haven’t been any!

Un-diagnosis can be lonely, with a diagnosis you can often find a community of people facing similar struggles, the support can be there if you want it. In this digital age we have forums of people literally at our fingertips. Just type your diagnosis in Google and there’ll be a Facebook group if nothing else! Sometimes giving support can be just a therapeutic as receiving it.

The mental health community is full of people who say “I don’t have a diagnosis but can I join…?” Of course, you don’t need a label to join but most people find it helpful to know for sure which label fits.

Sometimes the label changes

Sometimes clinicians get diagnosis wrong. Sometimes illnesses change. Sometimes diagnostic tests change or medicine gets smarter. For one patient this could be a traumatic and confusing process, for another it might be liberating.

Without a diagnosis, you may feel like a list of unknowns, more questions than answers. Why do I feel like this? Why do the tests show this? Who am I? What am I? Why is this? Things that don’t make sense and things that don’t add up. With a diagnosis there may still be lots of questions but some of them may start to have answers.

Your illness, disorder or disability doesn’t have to define you, that’s a choice, but a diagnostic label simple helps things make sense.

Broken trust

Trusting medical professionals

In a recent blog I concluded that I was going to try some new medication with the support of my GP – sounds sensible and simple doesn’t it?!

Unfortunately, my relationships with medical professionals isn’t straight forward!

I’ve had mental health problems for over 20 years and my physical body has been letting me down lately too:

  • The first time I went to my GP (admittedly this was in the 90s) I wasn’t referred for the support I needed.
  • The psychiatrist I was under for my first hospital admission (2005) mis-managed my case so badly I nearly died.
  • Bed bound in hospital with a fractured spine I contracted MRSA (to be clear, I could not get up and about to go and find MRSA for myself, I was given MRSA).
  • Ambulance outside A&E departmentDiscriminatory treatment in A&E following self harm. Eg longer waiting times and derogatory comments. (Some may think I deserved this and I agreed at the time but self harm is a symptom of mental illness just like hypoglycaemia is a symptom of diabetes.)
  • During a subsequent hospital admission, I built a good relationships with a therapist but they stopped seeing me with no explanation.
  • When I’ve tried to raise concerns about my care, my version of events has been discounted.
  • Abnormal blood results have been missed. Only picked up 10 months later, when I was seeing the GP about something else. I was still really struggling with the problem from 10 months previous but why would you go back when you’d be told there was nothing wrong?
  • I came out of a consultation with a psychiatrist, having told him I was actively suicidal, with no plan to keep me safe. As far as he was concerned I was going to go home and take an overdose (of enough medication to end my life).
  • For years I was told my tiredness was due to me not eating enough. When they finally did some blood tests, they found I had an underactive thyroid.
  • During a phone consultation with my GP I was incredibly distressed (crying so much I could hardly talk) and the doctor made no reference to it. I tend to hide my distress very well, the fact I couldn’t was an alarming sign I was very unwell.
  • 3 incredibly painful cervical screening tests (I was told it was normal because I was difficult) when I’ve since discovered, if they used a small speculum it can be completely pain free (twice!)!
  • My GP “reviews” my repeat prescription without seeing me (for medications that require annual blood tests…).
  • Following an ankle operation my physiotherapist insisted the exercises that caused severe pain should be performed multiple times daily. I trusted her advice. Turns out, when I went back to see my surgeon, the operation I’d had, the no-pain-no-gain approach was not appropriate and I’d done more harm than good. (I’d been the one doing the exercises so it was my fault.)
  • After experiencing blunt-force trauma to my jaw with immediate swelling and extreme pain I was told I did not have a fracture and did not need an x-ray. 2 weeks later, an x-ray revealed a fracture needing urgent surgery.
  • I recently told my GP I’d lost a lot of weight. She checked if there was an explanation. Having fractured my jaw, we ruled out the “unexplained” (possibly cancer) but she showed no concern about the fact I have a history of a serious eating disorder and may be finding the situation problematic.

Don’t get me wrong, as a qualified doctor, I’m well aware of how hard it is behind the scenes. I don’t expect all medical professionals to be perfect, everyone makes mistakes but there many other examples; I’ve been let down time after time.

The definition of trust is: “Firm belief in the reliability, truth, or ability of someone or something.”. The 4 elementals of trust are believed to be: competence, integrity, reliability and communication. It saddens me that at times all of these elements have been missing from my care leading to serious consequences (at worst, near death, at best, seriously prolonged illness).

When we trust someone we are willing to be vulnerable with them. We have no choice but to be vulnerable with medical professionals; at best we’re talking about personal issues, at worst we’re under anaesthetic! I’ve recently discovered, when on the emergency surgery list, you might never meet the person who did your surgery!

I was asked to trust someone I had never met – when we did meet, unexpectedly, in clinic 5 weeks later, he said “hmm, I recognise those arch bars… did I put those in?! Oh, I was asked to come in and help… very nice to meet you!” Turns out, the top and bottom of my jaw had been operated on by 2 different surgeons! Now, this guy was absolutely lovely and the reason I didn’t meet him before my surgery was because there was no time; he was operating while I was being put to sleep. I came out of surgery at 10.30pm and went straight to sleep on the ward and for all I know he continued operating! In clinic he then introduced himself as if building up the rapport that leads to a trusting relationship, I cannot fault this interaction one bit!

Something I find particular difficult is that when we walk into the consulting room, even with someone we’ve never met before, trust is assumed; whereas in most walks of life, trust has to be earned. Does a medical professional assume that since they’ve earned their qualifications they’ve also earned our trust? I realise I may be an extreme case but it never seems to occur to the medics I see, that I might carry baggage. If I struggle to trust, surely other people do too but it literally never occurs to them that they might need to check if I need more reassurance or explanation.

If I was still practicing medicine, I’d like to think I would have more compassion for my patients and some understanding that I could not assume their trust.

At times when I’ve been considered a vulnerable adult (when sectioned under the Mental Health Act), I’ve been in a position where my inability to speak up for myself has been taken advantage of – this is simply not ok. At times, seeing a medical professional has put me in a worse position than if I’d simply not gone to see them.

Please don’t think I’m saying we shouldn’t trust medical professionals!

I’ve had numerous fantastic experiences (I’ve definitely had my monies worth out of the NHS):

  • Multiple occasions when psychiatrists have pulled strings for me to be admitted out of area (because I don’t want to be admitted where I work).
  • Surgeons who’ve preserved my ability to walk and to see without judgment.
  • Incredibly compassionate treatment in A&E following self harm (it’s probably been 50/50).
  • HydrotherapyHydrotherapy – just wow!
  • A psychotherapist who quite literally saved my life.
  • Paramedics who’ve saved my life.
  • Hampshire CCG agreed to continue funding a Berkshire psychotherapist when I moved house.
  • Multiple intimate procedures/surgeries done with ease, dignity and compassion.
  • Multiple 2 week wait procedures.
  • Once my jaw was diagnosed (on mainland England!) I received excellent treatment! Including my consultant booking to see me on a non-clinic day to check my progress! I highly recommend Guildford Macsfax department!

Unfortunately, I’ve just had a few too many bad experiences and it’s human nature to protect ourselves from future bad experiences! I consider myself incredibly fortunate that, with my medical background and interest in the medical sector, I have knowledge that means I can manage ongoing treatments myself but should I have to?! I have to rely on the GP for monthly prescriptions but I realised, recently, I really ought to go and see them when I realised what was written on my prescription really didn’t bare much resemblance to the dosages I was actually taking! (All safe – I do know what I’m doing – not something I recommend for anyone not medically trained!)

I avoid going to see medical professionals if at all possible (generally a good rule of thumb for most people!) but this means I often put up with far symptoms for longer than is advisable! Ideally I’d be assertive and insist that they listen to what I need but feeling vulnerable strips me of the minimal assertive capabilities I have!

When it comes to it I just have to believe that the majority of professionals have my best interests at heart. Just because I’ve met a few people on their off day (giving them the benefit of the doubt) doesn’t mean the next one won’t be completely awesome!