One Fibromyalgia sufferer’s open letter to all doctors.

Dear Doctors,

Can I tell you about my life? I only get ten minutes in my appointment, so I rarely get the opportunity to tell you about me and how Fibromyalgia and Chronic Fatigue Syndrome really affects me. I get ten minutes to tell you about my pain and if I’m having a bad day I’ll sit there crying, through desperation for relief and you might feel this desperation for just a second, however if it’s a good day I fear I have to put on the best performance of my life and speak at 100mph to try and convince you of how badly I’m struggling before you interject and tell me that I have to learn to live with this pain.

I know this and I’d find it a lot easier to accept if you had tried every licensed pain medication there is available, before making this grand sweeping statement. But you haven’t. Not even close to it.

You say this, then my ten minutes is up, you write up my notes and I’m gone from your office, and then in that moment your pain is gone, your pain that was me is gone, but my pain that I have to live with stays, it stays with me everywhere I go.

To the world my illness is invisible, my condition is mental and hidden away, nothing tangible to find in a test (nothing to see here!) My pain is invisible but I know it’s there, I feel it every second of the day and believe me when I say my family and friends know it’s there, because they see me crying and pacing and curling up into a ball, holding myself together as if somehow my body will fall apart piece by piece, if I let go.

Did you know I used to be a sprinter and long distance runner for an athletics club? Did you know that I used to be a size 8 model? Did you know that I used to run five nights a week? Did you know I used to be a ballet, tap and modern dancer? Did you know I used to be a kick-boxer? No. Of course you didn’t know these things, I don’t have time to tell you all this in ten minutes. Did you know I am no longer any of these things? Why? Because Fibromyalgia and CFS has taken all this away from me, in the same way it’s taken away my social life, friends, employment opportunities, happiness, figure and any zest for life that I once had.

So, why when I come to you crying because I can’t put one foot in front of the other without my hips jolting in agony, because I can’t bend my ankles and have to walk flat footed,  I dread showers because the water hitting my skin makes me wince, that reasonably warm baths burn my skin, the cold physically hurts my skin, my fingers hurt to move them, I can’t bear physical contact because my skin feels pained, my spine and back feel bruised to touch, direct sunlight is painful, my abdomen hurts and my jaws and gums throb with pain, which in turn become headaches, my knees throb with pain to the point where my legs start to shake in agony and I walk with a near constant limp, why do you deny me the pain relief that helps me? But instead brandish me an addict?

Why are you so afraid to prescribe opiates? They are addictive, yes, but it also soothes all of the above symptoms. I was prescribed Dihydrocodeine 2 x 4 per day, I believe this is the licensed dosage, yet some days I need 12 a day to reach the level of comfort to function. But because this goes over the licensed dosage you refuse to prescribe no more than 8 per day and instead I am made to collect a daily prescription to stop me taking over the 8 originally prescribed. This in itself is mortifying. I go there everyday doing the walk of shame, the pharmacists are rude and assume I’m an addict, necking pills for pleasure. In many ways yes, I am an addict, certainly dependent, most definitely dependent, I’m dependent on these pills in order to attain some semblance of a life, to be a mother, a wife, a student nurse, an employee, a participant in society.

But with this reasoning in mind I guess you could say I’m addicted to oxygen too. I rely on Oxygen to stay alive, and if I hold my breath for a minute or two my body begins to crave it so violently, I go dizzy and panic and start to gasp until my body has consumed two lungs full of air. I’m also addicted to water, if I don’t have water for three days my body shuts down, my blood pressure drops and I begin to die, I guess I’m addicted to food, nutrients and minerals too.

If I eat and drink more than is necessary to survive, I could become obese, put strain on my body, develop heart disease, develop diabetes and become very unwell. The best part is that this is slowly happening because my Fibromyalgia and Chronic Fatigue Syndrome make it almost impossible to exercise. So why does society say we are allowed to risk damage to our bodies in this way, but we aren’t allowed to risk our bodies with a couple more pills here and there to be as pain free as possible, to be able to function as best we can for ourselves and our loved ones.

I can buy all the alcohol I desire, I could drink myself into a stupor, this alcohol that has the added benefit of reducing one’s sense of consequence, risk and danger, this alcohol that contributes to filling our accident and emergency departments most weekends, tying up valuable resources.

I understand there are laws regarding medication and licensed prescribing and doctors are not allowed to break the licensing rules. I get that, I understand there are safety issues or at least I understood this for a while until I went to a pain clinic. But something that has become quite clear to me during my battle for comfort is that the fear of accountability and where the buck stops appears to massively outweigh what really helps the patient maintain a better quality of life.

Allow me to elaborate on what I mean by this.

At the pain clinic I was told that they didn’t recommend opiates because there weren’t many cases suggesting it worked for all Fibromyalgia sufferers and yet it does for some. I explained that regardless of how it affects others, opiates do in fact help me, so isn’t that what’s important here? After all we are here at this moment in time, this particular appointment to talk about how we can help me. They asked me instead to try a Lidocaine infusion, which is a heart drug??
I asked how effective is this treatment? To which I was told, there have been no real clinical trials to measure this and basically some patients said it has worked and others said it made no difference whatsoever (which is exactly what you just said about opiates but instead deemed this as too weak a result to justify prescribing them).

Regardless of me pointing this contradiction out they still pushed for me to try this infusion, ‘you should give it a go’ they said. ‘Would you like us to put you forward for the Lidocaine Infusion? We can do it now but you’ll have to sign a waiver because, wait for it….It’s not licensed to treat pain.’

Right……hmmmm……..confused……so now it’s okay to prescribe something that has no real clinical evidence as being effective and OUT OF LICENSE but as long as I sign to agree to this it doesn’t matter if it all goes badly, as there’s no comeback on you and nothing I can do about it because I knew it wasn’t a licensed treatment. That seems reasonable in total double standards land.

Next I was offered drugs to treat seizures. But I don’t have seizures why would I need a drug to treat seizures? ‘Because some patients say it’s helped, but some say it hasn’t (hang on, I’ve heard that before somewhere), ‘by the way these drugs could cause seizures in somebody whose never actually had one before!’

Right?

So, to summarise you are advocating trying an unlicensed heart drug and unlicensed seizure medication because it has helped some faceless, nameless people, even though I’ve just sat here and said that opiates (as in actual medicine licensed to treat pain) is what helps me but you would rather I didn’t use this because of their addictive nature? Did you not hear me when I listed my symptoms? Am I missing something here? You’re telling me that risking drug dependency is the reason you are refusing to give me my life back with a couple of extra pills but it’s okay to risk seizures and a reaction to lidocaine with medication not licensed for what you are Intending to use them for, but if I ask for 2 extra Dihydrocodeine per day, absolutely no way because prescribing more than 8 a day is prescribing out of licence?

So after hearing my argument the pain clinic agreed to recommend Zomorph a slow release morphine which I was pleased about, it felt as though I was finally being heard.

Although I got the response I wanted I felt even more inclined to believe that medicine is more about covering their own arses than patient needs, my gp had stated that she would never prescribe morphine for Fibromyalgia, never…except when the pain clinic called it my gp suddenly had absolutely no beef with doing the prescription. – In my mind all I could think was ‘you don’t really give a fuck about what I’m taking, as long as it’s not your call or ‘on your watch’! This was the PC’s call, now I started to understand what I’m really dealing with.

So just when I became a little too pleased with my new pain relief and a better quality of life, the guilt of being a complete and utter let down and burden to my family was just starting to lift and I dared to feel positive about the future – four weeks later at my next meds review with my gp, I was served this little pearler of a curveball.

‘You are only allowed this for 2-3 months because you don’t have cancer.’
This statement just blew my mind. What ? No, I don’t have cancer thank goodness. I cannot imagine what pain is experienced by patients with cancer, it is a truly awful and devastating disease but how is this relevant? It doesn’t make the pain of Fibromyalgia any less real or any less debilitating.

Now you’re just making me feel shame for asking for pain relief because I don’t have one of the most horrible and devastating diseases there are.

Does it not matter that people with Fibromyalgia suffer from constant pain and have their lives derailed? I’ve explained how it’s changed mine.

Doctors tell me all of the time that Fibromyalgia is still a bit of a mystery and that they don’t really understand it. Exactly you don’t understand it, it is thought to be related to chemical changes within the brain but again, it is thought, but you aren’t sure. So when it comes to this disease and how it effects us and what helps us, maybe consider us sufferers the experts.

Therefore, I’m asking all doctors as a Fibromyalgia and CFS sufferer, when you meet a patient with this disease, believe what we are telling you, trust our descriptions of pain, look at the person behind the symptoms, consider who and what we were before today, we often are seeking pain meds but not for the reasons you believe we are, we are also seeking empathy, to be heard and to be understood. Drop the guilty until proven innocent mentality or should I say the drug-seeking until proven diseased mentality.

Yours sincerely

Nikita

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