What happens when the pain gets too much?

Fibromyalgia, Joint Hypermobility Syndrome and Chronic Fatigue Syndrome all cause some form of pain. However, for me, the worst of them is the pain I get from Fibromyalgia.

Most of the time when we are in pain we can take some paracetamol or ibuprofen and the pain dies down. Or if it is particularly bad, then we use opiates such as codeine or tramadol. But what happens when these painkillers do not get rid of the pain? When taking a handful of painkillers is basically like swallowing a handful of smarties. That’s what life with Fibromyalgia is like. I am in constant pain that is not relieved by traditional painkillers, and even the atypical medications prescribed barely touch the surface. I can’t count the amount of times i’ve been told to exercise or meditate instead of taking painkillers. As if these are the magic cure to the excruciating pain experienced by people with chronic illnesses. I cannot count the amount of times i’ve been told that this pain is all in my head and that no one could possibly be in this much pain all the time, or even that i’m too young to be in this much pain. This pain is not in my head, it is very, very real. I would not be asking for help if I didn’t think I needed it. I would not be asking for increasingly stronger painkillers if I had not tried everything in my power to avoid it.

I only go to A&E when I am absolutely desperate. When I have taken a concoction of medications that would knock most people out. It is very rare when in A&E to find a doctor that understands chronic pain. The trouble with emergency medicine is that they want to find out what is wrong and cure it. The trouble with me is, I already know what is wrong and there is no cure, I just need pain management. But A&E is an absolute last resort, when I’m sat in my room in so much pain that the thought of killing myself becomes ever more appealing as I cannot bare the pain anymore. But when I get to A&E no one knows what to do with me. I have a care plan in place that has been set by the Pain Clinic, in it it states that if I attend A&E I am to have IV Paracetamol and Morphine and to be treated in a kind and understanding manner. You might find is strange that my care plan says ‘to be treated in a kind and understanding manner’, however I have been treated so appalling by some staff that this statement is necessary. I’ve been called an attention seeker, a drug seeker and a manipulator. None of these are true. I do not want your attention, I just want you to help me. If I could get by without any drugs then of course I would. Just because I cry and say that I wish I was dead, does not mean that I am manipulative. I come to A&E when I have no other option, when I am desperate. If I had cancer and needed pain management I would not be turned away and called names. I would be helped in a kind and compassionate manner and would receive the relevant medications and treatment. Just because you cannot see my illness does not make it any less real. The other problem is that many doctors do not believe that Fibromyalgia is a real illness. These views tend to come from older doctors as when they trained, illnesses such as Fibromyalgia had not been discovered or were still very rare. These doctors are often under the understanding that Fibromyalgia is all in the patient’s head and that they need psychological help rather than medical intervention. Of course there are always exceptions to this, and I have found a few older doctors who are understanding and a few younger doctors who do not understand Fibromyalgia. All I ask is that when I turn up to A&E that I am treated with respect and kindness. That I am not labelled as a drug seeker, but am instead given the relevant pain medications and cared for like any other patient.

I am so very thankful for the NHS and all the understanding and kind doctors that I have seen. I dread to think where I would be without the help of the NHS. This post is not to negate the great work that these doctors do, it is simply to explain a side of the NHS that not many people see.

Until next time,

Louise xox


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