By Ann-Marie D’Arcy Sharpe, from Pathways Pain Relief.
Ann-Marie is a pain educator writing on behalf of Pathways Pain Relief, an app created by pain patients and backed by science with the aim of helping pain patients overcome their chronic pain.
Living with chronic pain is challenging to say the least. Sadly these challenges don’t simply stem from the symptoms we experience; the symptoms are often invisible, and thus are misunderstood. The stigma surrounding chronic pain is all too prominent, especially in medical settings.
I live with fibromyalgia and arthritis, as well as mental illness (bipolar disorder). Fibromyalgia in particular is a condition which, in my experience, others have found difficult to understand. It’s often thought of as a diagnosis medical professionals give when they can’t find any other answers, which is far from the truth. Fibromyalgia is a valid diagnosis in it’s own right.
Medical professionals didn’t offer me much in the way of treatment, essentially telling me that I needed to ‘keep a positive attitude’ and ‘get on with it’. Nobody told me that there were actually a wide range of scientifically proven ways to manage and treat my chronic pain! It wasn’t until I did my own research and found ways to effectively reduce my symptoms and manage my pain, that I was able to regain a lot of my functioning and find the support I needed.
Treatment Options: What’s Out There?
Unfortunately, this experience of disbelief, and having to conduct your own research (often to the chagrin of the people who denied you help in the first place) is all too common for pain patients. The education for the management and treatment of chronic pain patients does seem to be insubstantial and ineffective. This frequently leads to people with chronic pain being left to struggle on alone, feeling that there’s no help available to them and that there’s nothing they can do about their pain.
When there are treatments out there which could improve patients lives, this is simply unacceptable. There is a wide range of treatment options, including:
- Pain killers: this is perhaps the most obvious one. Paracetamol blocks signals being transmitted across the synapses, the gaps between neurones, specifically in those linked to pain pathways, reducing the sensation of pain. NSAIDs like ibuprofen and aspirin modify the inflammatory response that plays a major role in nociception (the fancy word for the pain response). You may even be able to access stronger painkillers via a medic.
- Pain clinics: These are typically outpatient clinics within which you have access to a number of different specialists. These specialists will help you find a treatment plan which works for you.
- Physical Therapy: You might have also heard this referred to as physiotherapy. Physical therapy includes a wide range of treatments which can help to reduce pain and stiffness and increase mobility, applicable to a wide range of conditions. Choosing the right physical therapy for your condition is essential, as some programmes may benefit certain conditions while being ineffective, or even proving harmful, for others.
- Cognitive Behavioural Therapy (CBT): A psychological therapy which can help you to better manage your symptoms and gain greater control over your emotions. While this does not address the sensation of pain in and of itself, learning to cope with the pain is a useful strategy for day-to-day life.
- Diary of a Disabled Person top tip: I find hot water, either from a bath, shower, or hot water bottle can help soothe pain, particularly in muscles and joints!
You can find a comprehensive guide to all of your chronic pain management options here.
Being a Self-Advocate.
While no one should have to push for the treatment we deserve, sometimes that is exactly what’s needed. Here are six tips for advocating for yourself:
- Do your own research: Don’t be afraid to research your symptoms, or your specific condition if you have a diagnosis. Try to use reliable websites such as NHS Choice, or even delve into the latest research on Google Scholar if scientific journals are more your thing. Finding out as much as possible about your chronic pain, the causes, the treatments, the side effects, and case studies allows you to advocate for yourself more effectively. A doctor is far more likely to listen when you’re backed up by good research!
- Make notes to take with you to appointments: It’s easy to get overwhelmed, nervous or flustered at medical appointments, particularly if your doctor is not as accommodating as you would like them to be. In fact, many chronic conditions come with “brain fog” that makes it likely you’ll forget everything you needed to ask about in the appointment without a reminder. Jotting down a quick list is an easy way to keep yourself on track.
- Take someone with you to appointments: Taking someone you trust with you to appointments can give you the moral support you may need. Having someone else to listen to what’s being said at appointments can be helpful, as it’s often hard to keep track of all the details yourself. You could choose to discuss what you’d like to gain from the appointment with your loved one before you go in, so that they can speak up for you if you’re struggling.
- Keep a record of appointments: Keeping notes of which appointments you’ve attended and what was said at each appointment allows you to gain greater control. Different doctors may have conflicting opinions, or may simply forget about a possible treatment you haven’t tried yet. Remember you also have the right to ask for your medical records, and the records of any tests that have been carried out. However, you will probably need ID and it may take some time to retrieve physical records as many are now electronically stored.
- Keep going back until you get the help you need: Don’t give up! If you aren’t getting the help you need, keep going back to see your doctor. You can always ask to see a different doctor to get a second opinion, or switch surgeries altogether to obtain the help you need. Don’t be afraid to be seen as a burden; you are well within your rights to seek the treatment you need. It’s your doctors’ job to help you.
- Seek other options if you feel they are appropriate for you: If you feel that other ways to access treatments would work for you, explore those options. Many people find that acupuncture, aromatherapy, or even meditation may help them, and while these techniques have varying amounts of scientific evidence to back them up, they are all low risk. However, when it comes to ingesting homeopathic remedies or unnecessary nutrient supplements, there is a substantial risk of physical harm for minimal reported benefit. You may also be able to access treatment privately if resources allow.
Whatever you choose, be sure to research thoroughly beforehand. Check out relevant case studies and scientific journals, looking for more recent work with large sample sizes, preferably published in reputable journals.
Living with chronic pain is undeniably hard, but know that you are not alone, and that there are ways to live a full life even with chronic pain. While there isn’t a magical quick fix, there are treatments and management techniques which can improve your quality of life and help you to overcome your symptoms.
Nobody should be left feeling that there is no hope for them. It’s indisputable that things must change when it comes to chronic pain treatment (Diary of a Disabled Person butting in again: I can confirm that there is a vast array of research currently going on for various chronic conditions). In the meantime, I hope that these tips for advocating for yourself help you to seek the treatment you need.
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