Welcome to ManageMySymptoms.org: Managing persistent symptoms
- Jun 16, 2023
- 7 min read
Welcome to this website and blog. I want to explain something of why I'm here and what my vision is for this. It is in development and will expand over time to hopefully become a useful resource for you, especially if you have longstanding (chronic) symptoms, explained/explainable or otherwise: patients with Persistent physical symptoms, Medically unexplained symptoms, or needing Long term condition management or Holistic health care are going to find this site helpful for managing their persistent symptoms.
I am a UK National Health Service (NHS) General Practitioner (GP) of long experience so I have dealt with thousands of patients over the years, very many of whom had longstanding (chronic) physical or emotional symptoms, some of which we have been able to explain in conventional Western Medical terms and some not. It is my passion and my life's work to try to improve my patients' quality of life so that they are able to enjoy their life and fulfil their purpose during what is our quite scarily short time on this beautiful planet. Managing persistent symptoms is a crucial part of this.
I have been inspired, and have learned from, many dedicated, skilled and frankly amazing colleagues as well as our patients over the years (many patients are truly amazing in the ways they deal with the hand of cards that they are dealt in their lives and their health), as well as from my own life experience, about what is helpful to some or all people and what is not so helpful. The internet is full of stuff, again, some of which is helpful but some really not (and often people just want to sell you stuff - again, not necessarily helpful... ).This site/blog aims to develop into a resource that you can trust, as it comes from a place of both knowledge and of experience, and a willingness to share positivity and positive resources that I have found have been helpful to my patients.
My experience is from Primary Health Care in the UK. I am aware that other countries have many differing systems of health care (if they have much available health care at all 🙁) so this may require explanation - in the UK a GP is a generalist family doctor who makes an initial assessment of the patient with health care needs, treats/manages what they can and refers on to a more specialised Secondary Care/Hospital doctor if this is needed (I will come back to how this works, or sometimes doesn't, further in future blog posts). In my own case, I have lived and worked in the same semirural area for almost three decades so I understand very well our local community, with both its pressures and its benefits and their effects on our local population. One great benefit of this set up is continuity of care, i.e. getting to know the patient over years, with their family circumstances and their past medical history, which gives a context to a patient presenting with new (or, indeed, longer term) symptoms. I am well aware that there is less of this available in the UK's NHS than there has been in the past, which in my view is very sad as it is so very valuable when assessing patients, but GPs and other clinicians (Nurses, Nurse Practitioners, Pharmacists, etc) are still out there and are working incredibly hard and are still providing this, where they can. We do generally, however, only have 10-15 minutes for each patient's consultation so it can be very difficult to explore in detail lifestyle issues (such as diet or exercise), even when we or the patient see that it would be really helpful. When we have continuity, we can address these issues in stages over a period of time but I feel that somewhere for patients to refer back to, to help them to explore the more holistic and esoteric aspects of health care will be a useful addition to their health care: for clinicians to signpost patients to and for patients to discover new ideas for themselves.
We often come across a situation whereby a patient comes to a clinician with a list of symptoms; they are assessed by the clinician (this generally includes listening to the patient's story, examining the patient and then, if needed, performing a series of additional tests) and then, with results obtained, the clinician happily tells them that everything is OK (i.e. they have not found any serious medical cause for their symptoms). Sometimes the patient is very happy about this 😊 but sometimes the patient appears disappointed 😕 as they (understandably!) wanted to find a cause for their symptoms that the clinician could help them with. So, what happens next for these patients...?
My vision for this blog and website is that it becomes a resource to tap into at this point - to explore some other routes towards wellness and towards managing those symptoms. Perhaps to explore a different way of thinking about or approaching them? Perhaps to find some lifestyle changes that may actually improve or get rid of the symptoms altogether? The jigsaw puzzle images are important to me because I like to think of this approach as pieces of a jigsaw puzzle: if you just try one thing or take one medication, it might help a little bit, but if you try several different approaches and add them together then it may be like fitting together pieces of a jigsaw puzzle and together they may form into a picture that actually makes more sense and has much more effect... I often discuss this metaphor with patients and they find it a useful way of thinking about their holistic health care.
I want to share helpful and positive resources here, that I and/or my patients have found helpful over the years. I am inspired by a delightful little book, Everything I've Ever Done That Worked by Lesley Garner. Lesley writes, beautifully:
Some people have first aid boxes. Some people keep recipe books. Some people have tool kits. I keep a resource book – everything I’ve ever done that worked. In moments of confusion, indecision, panic, depression, stress and plain insomnia I can pick it up and know I’ll find something in its pages that will dig me out and move me on...
This isn’t the single-answer approach. This isn’t a guide to the one true Way. There are hundreds of ways and I have tried many of them. This is my personal greatest hits, my tested and recommended short cuts...
We begin coping with whatever life throws at us from the moment we are born, and we cope with it in a way that is partially determined by our inherent make-up, the gifts and characteristics already determined by our genes. The business of learning what works for you begins at once. One baby can cry and immediately be fed. Another, born into a time of famine or into a different family, can cry and never be fed. But for you, reading this book, life isn’t so extreme. You have survived infancy, adolescence. You have made choices and maybe you are beginning to learn that what worked in one situation is a disadvantage in another...
You have made choices that have brought you to this blog. You could try making up your own Resource Book, with what has worked in one situation but not in another? Write some ideas down. Think about what affects you and alters your symptoms, for better or for worse? Keeping a symptom diary can be a really helpful approach - we will come back to this in more detail in a future blog post.
This blog aims to become this kind of resource but aimed specifically at health, in a holistic way.
Definition of holistic
adjective
characterized by the belief that the parts of something are interconnected and can be explained only by reference to the whole.
"the solution demands a holistic approach and a strategic vision of what can be achieved"
In MEDICINE
characterized by the treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of an illness.
Undoubtedly, all of our parts are interconnected: mind, body and spirit : like ingredients in a recipe, they together make up the whole. We can only explain what is going wrong with any of them by reference to the whole person, and their life circumstances (past, current and future, all are relevant), i.e. all of the pieces of their own personal jigsaw puzzle. This is where our amazing and much-loved NHS struggles, as demand always exceeds its supply, and it is a victim of its own success, in terms of the vast numbers of patients needing help from overstretched resources. And so this blog aims to be a little additional source of ideas, resources, strategies and positivity, for when you need them. Dip in and out as required; try something you may not have tried before; share these ideas with your friends and support network. We very often see patients who have had a major illness, like a heart attack or a cancer diagnosis, and, even though this has been a terribly difficult time for them, they tell us that it was the best thing that ever happened to them, as it forced them to re-evaluate their life and how they were living it, how they were (or were not!) looking after their precious bodies and how much better they are now feeling, having addressed some of these issues. Don't wait for this major illness to happen to you. Or, if it has, turn it into something positive and learn something about yourself and your precious body.
Listen to what your body is telling you just now. Pay heed to warning signs (physical or emotional symptoms, explainable or otherwise) and do something about them. Take a step down a new path. It may be a small and hesitant step but it may reap that richest of rewards: better health. For what are our lives without holistic health? We could have all the money we can imagine, fame/celebrity, a fabulous and exciting job, whatever it is that you may wish for, but poor health can take all of that away from us in just a moment.
In each blog post I will lead you through a list of relevant resources at the end, that you may be inspired to explore further. Borrow a book from a library, take a look at another website, listen to a different podcast, try something new. Also, both patients and any health care professionals who may be reading this may find the list of relevant references helpful for further ideas and explanation.
I look forward to welcoming you back to the next blog post, and maybe the next piece of your own personal jigsaw puzzle. Sign up on the website for notification of when this is published. Welcome on board!
Resources
References
Holistic health care? by Edzard Ernst
British Journal of General Practice 2007; 57 (535): 162-163.
Incredible work.