Have you ever had pain?
I don’t mean a headache, or even a broken leg. I mean long-term, unrelenting chronic pain. ‘Chronic’ typically means pain that lasts more than six months, and is generally past the point you’d have expected to heal. It doesn’t mean it’s psychosomatic. It could be an injury that keeps recurring, something that has healed incorrectly, or you have a condition that causes constant pain. Acute pain doesn’t mean the pain is worse, it simply means that the pain has lasted a short period of time. You can have pain at different levels of intensity – whether chronic or acute.
Before I had chronic pain myself, and for a long time after, I believed there were painkillers that could stop it. However, for the vast majority of people this isn’t the case. I won’t say there isn’t anyone who has found a painkiller that takes all their pain away, but for most people the best they can hope for is a reduction in pain levels. Something that turns down the dial, as it were.
Pain medication is a complicated area with no one-size-fits-all approach. There are lots of different types of painkillers, such as those that reduce inflammation, medications that work on nerves, antidepressants that also help with pain, and opioids which bind to specific receptors in the body . Further within the types of medications are even more options. It can have an immediate or slow release effect. You can take it by pills, patches, topical application, liquid, under your tongue, injection, and so on.
Once someone has exhausted the over-the-counter options, it can be a difficult decision to go to the doctor to ask for something different. It shouldn’t be. Pain deserves to be managed as well as any other symptom of a condition, but there seems to be far more judgement intrinsically linked. Perhaps it’s due to the fact pain is invisible, or maybe because it’s hard to comprehend the impact of when pain becomes chronic. Those feelings of judgement can also be internalised – that you’re not the type of person to pop a pill. That other people manage without. That it’s not healthy.
I remember once having an assessment by a Physiotherapist. In my area, they have something called a Spinal Pathway, so anyone wanting to see a doctor to have treatment for back pain has to be assessed by a Physiotherapist first. My GP had referred me as she felt an appropriate course of action was to see a consultant to discuss having some joint injections into my spine. After talking to me for a couple of minutes, the physiotherapist declined my request. I asked why, and he responded, “You don’t seem to be screaming out in pain for them.”
I could only sit there in disbelief. Pain is subjective, and very often when you have chronic pain, the amount of pain you’re in doesn’t show on the outside. If someone healthy woke up with the level of pain I live with on a daily basis, they’d be straight into Accident & Emergency begging for help. The fact that I’m not crying or screaming, and may even be upbeat and smiling is not because I’m brave, or special, or have amazing pain tolerance – it’s just that I’ve been in pain for 13 years straight this July. You have to learn to live with it to some degree, as there’s no other choice. A certain amount of pain becomes normal. That’s not to say I don’t have bad days, or that I don’t ever cry, or that the level of pain regularly jumps above the threshold I can cope with. It does, but I usually don’t go out on those days if I can help it.
Seeking help for pain relief with medical professionals always carries some risk, that somehow you may receive the dreaded drug seeker label. It happens all the time, to completely innocent people who are just trying their best to manage their pain, and have no interest in abusing the medication. The problem is your GP sees you for around ten minutes at a time, and for me I often have telephone appointments as I don’t have the energy to get to the surgery – so she can’t even see me. My GP is very nice, but she’s perfunctory and to the point. We look at medications and their dosages and side effects. She’s never asked me, How does your pain impact you? What help do you need? What does a normal day feel like for you? It’s likely because those ten minutes are ticking past, she’s already an hour late and has a room full of patients waiting. I understand the reasons why, but it’s hard for her to then build a true picture of my life. It would be very easy for her to see me sitting next to her, dressed and holding it together and wonder if it’s as bad as I say without that vital background of how long it took to dress, what help I needed and how long I will need to sleep when I’ve got home from the appointment to recover.
If someone has asthma, diabetes or a high blood pressure – there are tests to back-up what they’re saying. An asthmatic can blow into a Peak Flow Metre to show their inhalers aren’t strong enough, but chronic pain patients only have their words, their actions and the hope that the doctor will understand. It’s so easy to say the wrong thing that stops the doctor from understanding, and make them doubt you. But would a doctor judge an asthmatic who needs a stronger inhaler? Would their character or appearance even come into it?
My pain has been pretty uncontrollable lately. In some ways I’ve wiped out months of my life by changing to the wrong medication. So many plans went out the window at a moment’s notice. Frustratingly, I was undoing months of progress of physiotherapy.
Pain relief can be one step forward, and a marathon back.
Then I got myself into quite the quandary. I found a medication that worked really, really well. But only for a little while, and then the bad days were horrendous. My doctor was happy to keep increasing to keep those good days, but I always knew the bad days were coming. And they were so far above my normal threshold of pain, I couldn’t even begin to explain. But it was so hard to give those good days up – the days where I could function for longer than normal and even be productive.
I then had to make the decision to leave those days behind. I had to. I could have kept increasing the strength, but when would it end? I’m in my 20s – I have years and years of pain relief ahead of me. If I max it out now, where the hell would I be in my 30s, 40s, 50s and beyond?
With every medication you take, you have to weigh up more than whether it helps, but also look at:
- Are the side effects bearable? Are you taking six different medications just to counteract the side-effects?
- Your tolerance levels. Are you constantly having to increase the dose because your body gets used to it?
- Your levels of functioning. Some of the best forms of pain relief make you incredibly drowsy, or make you feel ‘out of it’. That might be fine to have a little break, but if you want to leave the house, you need to find somewhere in-between.
- Can you access it? Not every medication is available in every country, some are through consultants or specialists only.
- The relief you get. Taking all the above into account, is it worth it?
Living with chronic pain can feel like you have multiple spinning plates that you have to keep in the air. One falls, and the medication isn’t any good. Then, when you finally get a level of pain relief you can live with, someone throws a spanner in the works, such as this morning when my GP phoned me to say the new pain medication I have been put on has just been ‘red-listed’ meaning only secondary-care (consultants) can now prescribe it.
It’s frustrating and exhausting trying to keep all those plates up. It’s important to remember however, that this is not a sprint or a marathon, it’s a long-term balancing act.
First of all sincere apologies for the lack of updates lately. It’s been such a busy time, that writing has fallen by the way-side a little.
I just thought I’d give you a small update about what I’ve been up to lately.
I recently wrote about the process of obtaining a Personal Budget to employ a Personal Assistant. I’ve had that in place a couple of months now, and it’s been brilliant. She’s been able to help with a range of things, from the obvious helping with care, but also driving me to appointments, getting my wheelchair out, cooking, sorting out areas I haven’t been well enough to do in my home, etc. It’s taken quite a bit of stress out of my life and I’d recommend it to anyone.
Medically I’m still very much in no-man’s land. The Pain Clinic have declared me incurable and untreatable, and discharged me. Apparently they only help people who will get better, they’re not interested in actually managing pain. My specialist consultants also are no longer able to keep me on their books due to over-subscription, so I’m consultant-less. It’s quite a scary place to be.
My GP has been trying to help with this situation, and wrote to a local Rheumatologist who lists himself as a connective tissue specialist on the hospital website. He rejected my referral, and wrote back saying, “I have no interest in managing Ehlers-Danlos Syndrome.” Although he did refer me to a Hypermobility Specialist Physiotherapist instead. Silly, silly me actually got my hopes up and thought she might be interested in working with me to move forward. Instead without any examination she declared there was nothing she could do, so I’d have my final batch of Hydrotherapy and that would be it. She then spent the rest of the session basically telling me I should be perfectly okay in the mornings, as other people with the condition manage. I tried to explain I have severe insomnia and sleep issues, and am a total mess in the mornings, but she wasn’t interested.
I then finished my final block of Hydrotherapy, which I really enjoyed. I do find the warmth means I can do much more than out of water. I would love this on a rolling-basis, and will keep trying to pester the hospital to make this happen.
I’ve also just had a sleep study done, but I’m waiting for the results. It was a machine I had to take home, that strapped to my stomach and chest, a tube went up the nose (nice!), a mask for your mouth and finally a clip for your finger. They have to rule out Sleep Apnoea before they’ll send you to a sleep consultant, but I am a little worried they’ll tell me it’s not Sleep Apnoea, and then not let me see anyone at all. Hopefully I’ll get the results soon, and this long-term issue is explored.
I have been lucky enough to find a private physiotherapist, however, that has an interest in Ehlers-Danlos Syndrome – and he genuinely does. It’s a lot of money, but the only treatment I’m now getting. He hasn’t promised he will be able to help me, but he’s going to try. If I can even maintain what little mobility I have, that would be a start. I’m diligently doing all the exercises he’s giving me (not a hurriedly printed out sheet, but thoughtfully targeting specific issues) and he’s easy to contact if things go wrong to provide advice, and alternative exercises. He really seems to know his stuff, so that’s been great.
I also recently took part in a study on Ehlers-Danlos Syndrome that’s all about what triggers the condition in the first place (obviously it’s genetic, but there is often an occurrence in your life that makes it much worse, often puberty, having children, an accident or something else. Others just have it severely from birth, so it’s exploring all of that.) The research also looks at flare-ups and the triggers.
The research sounds really interesting, and when it’s published it will obviously go into medical journals, but particularly GP and physiotherapist journals, to catch front-line staff.
One thing I truly believe is that the fight for decent rates of diagnosis lays almost entirely with GPs and Physiotherapists. They’re the ones that have to see signs, and see past one problem joint, or a history of chronic pain without a solid diagnosis and make a referral to a specialist. Once they have that awareness, only then can diagnosis rates climb.
I’m also preparing for Christmas, and this year have decided to have my first ever real Christmas Tree! I’ve also been making festive bunting with the help from my Personal Assistant, and it’s the first year in a really long time I’ve been genuinely excited for Christmas!
Please comment below to tell me your news, and whether you’re looking forward to Christmas or not?
A good GP is like gold dust.
It’s not that I believe the vast majority of doctors are bad doctors, it’s just that I think many have a specific attitude to healthcare. They want to see a patient, diagnose the problem, hand over a prescription and see them in a few years time for another issue.
However, when someone has a chronic illness – they’re obviously way past that point. There are no antibiotics for us, no treatment that will make it go away – and I think many doctors find that frustrating.
It takes a special kind of doctor to remain supportive and helpful in the long-term. To not give up as soon as one medication fails, or a treatment doesn’t work as suspected, or a medication helps one symptom – but creates another which now needs treating.
I have a check list of some of the qualities I like in a GP:
* A good doctor doesn’t roll their eyes when they ask how they can help, and you pull out a list. A good doctor realises for a chronically ill patient each symptom is connected, and shouldn’t be restricted into only discussing one problem at a time.
* A good doctor realises every symptom has significance. For example, the medication I am on for pain relief has unfortunately caused me to have acne. I find this really difficult, and I don’t want it dismissed as there are more ‘important’ issues.
* A good doctor doesn’t get frustrated when you come in clutching the latest breakthrough study, but reads it and explains whether it’s possible in my case or not.
* A good doctor let’s you cry when it’s all too much, and is thrilled for you when something goes well.
* A good doctor doesn’t dismiss a new symptom as just part of the condition, and carefully checks it first.
My GP is amazing. She has this special quality about her that you feel she truly cares about all her patients. She fights for us – will battle the system or a consultant when needed.
A GP to me is more important than a good consultant. They are really in charge of your care, your medication and the day-to-day stuff of your condition.
Unfortunately, a few months ago my GP informed me she was leaving the practice. I was, and still am, gutted.
I’ve been with the GP practice my whole life – but since I moved to the other side of town, and since the one GP at the surgery I like will be going, it made sense to move to one closer to home.
My GP highly recommended a specific doctor as best to treat my particular condition, but when I called them the receptionist informed me I was out of their catchment area by a road. When I told her though, she immediately picked up the phone and said not to worry, they owe her a favour and she’d cash in it. By the time I got home I’d had a call from their practice manager to say I was welcome to join the surgery.
Today I have my last ever appointment with her. I’ve got her a thank you gift, but I know there will be more tears!
Edit: There were tears from both us.
I am currently going through the awful process of claiming Employment and Support Allowance. This is the ‘unable-to-work’ disability benefit that replaced Incapacity Benefit in the last couple of years.
To put it mildly – it’s a stressful process. When you have a disability, you try to focus on the things you can do. You think about alternatives, or ways in which you can take part. However, ESA turns all that on its head – and you have to detail all the things you can’t do. It’s a depressing process. It’s also a long one.
To claim the benefit you begin by being signed off sick by your GP, once your work has ended. You get put onto an assessment rate. After approx 13 weeks you’re sent a form called the ESA50. It’s a lengthy form, very repetitive – where you have to justify such criteria as why you would struggle to pick up an empty cardboard box repeatedly, safely and reliably.
You’re expected to put medical evidence together with this form. When the system was set up – the Department of Work and Pensions or ATOS were supposed to request medical evidence on your behalf, but they did so on very few cases. Therefore claimants were being turned down for a lack of medical evidence! The claimant would then have to gather the medical evidence they thought had already been asked for in order to appeal and win the case – causing unnecessary stress, and time and tax payers money to be wasted.
So many claimants began to ask their doctors for evidence upfront. I’ve had two experiences with this – the first time my GP said not to worry, she would be asked automatically as part of the process. Of course no form was sent. Since then, many GPs have realised the system is failing, and some have changed their attitudes having seen the aftermath for their patients.
A couple of weeks ago I went to see my GP again, and she was very sympathetic. She immediately said of course she would, and she’d make it as detailed as possible. A few days later I received it – and it was really helpful. There was no charge for it.
I also wrote to my consultant – and did get a letter, but it wasn’t as good as my letter from my GP. It simply briefly summarised the kind of symptoms someone with Ehlers-Danlos Syndrome would experience generally, which I’m not sure will help as much – but it didn’t hurt either.
So in both instances, I was lucky.
A couple of days ago the following article on BBC News caught my eye. It stated that Bro Taf, a Welsh medical committee in South Wales have sent out a letter to their GPs suggesting that they stop writing supporting letters for their patients.
I was horrified.
In April 2013 legal aid to assist claimants to fight incorrect benefit decisions was stopped. Citizens Advice Bureau, often many people’s first point of call for assistance saw similar cuts, which vastly reduced the amount of people they could help both apply for benefits, or help appeal. There were even reports of advisors being made redundant half-way through appeals processes, leaving those facing a bureaucratic and difficult system alone.
The Citizens Advice Bureau Logo. (Photo credit: Wikipedia)
The system has been made harder, and further cuts are expected.
The one support system patients still hope for is from their GP. The system favours letters from consultants – however, consultants are frequently discharging patients to reduce their caseload. Other people only see their consultants infrequently, and some have conditions that fall between specialities so get bounced between departments faster than you can say the NHS.
I believe Bro Taf have now withdrawn their letter – but it still seems to be down to the discretion of the GPs whether to write supportive letters or not, and this may have given them more a reason to say no.
How can it be that the system doesn’t automatically request medical evidence as part of the process? Shouldn’t that be step one?
Have you been refused a letter of support by your GP? Did you complaint, or just have to submit your claim without it?