The Role of Speech & Language Therapy (SALT)
Did you know Speech and language therapists (SLTs) play a crucial role in the management of patients with respiratory conditions?
The Royal College of Speech and Language Therapists (RCSLT) comprehensive factsheet on Upper Airway Disorders (UADs), is an essential guide designed for patients managing chronic respiratory conditions such as CPA, ABPA, COPD, asthma, and bronchiectasis. This resource aims to highlight the often-overlooked possibility of co-existing upper airway disorders, which can significantly complicate the management and treatment outcomes of these chronic respiratory diseases.
Within these pages, you will find detailed insights into the symptoms, diagnostic challenges, and effective management strategies for UADs. The leaflet emphasises the critical role of Speech and Language Therapists (SLTs) in assessing and treating these disorders. SLTs are key to providing targeted interventions that can alleviate symptoms and improve daily life.
This leaflet also aims to raise awareness amongst clinicians about the importance of considering UADs in the differential diagnosis of respiratory conditions. Enhanced understanding of these disorders can lead to better patient outcomes and improved quality of life.
To access the leaflet, click here.
Harnessing the Power of a Symptom Diary: A Guide to Better Health Management.
[et_pb_section fb_built="1" theme_builder_area="post_content" _builder_version="4.24.2" _module_preset="default"][et_pb_row _builder_version="4.24.2" _module_preset="default" theme_builder_area="post_content"][et_pb_column _builder_version="4.24.2" _module_preset="default" type="4_4" theme_builder_area="post_content"][et_pb_text _builder_version="4.24.2" _module_preset="default" theme_builder_area="post_content" hover_enabled="0" sticky_enabled="0"]
Managing a chronic condition can be a challenging journey filled with uncertainties. However, there is a tool that can help patients take control of their condition and help them understand potential triggers and how lifestyle factors may impact their condition. This tool comes in the form of a symptom diary, a personal record that tracks information relevant to the patient, such as symptoms, ad hoc medication usage, exacerbations, food intake and activities.
Key benefits are:
- Empowerment and control are at the core of why keeping a symptom diary is beneficial. It offers individuals a sense of ownership over their health, allowing them to monitor and manage their condition, rather than feeling overwhelmed by it. This proactive approach is not only beneficial for the patient's sense of well-being but also contributes to research and future planning. Documenting symptoms can help better understand the condition, aiding not just the individual but also the broader community by contributing valuable insights into chronic illness management.
- Another benefit of maintaining a symptom diary is its ability to foster improved communication between patients and their medical teams. By providing a detailed account of symptoms and their impacts, a diary ensures that important information is communicated effectively, allowing for a focused discussion during appointments. This enhanced communication can lead to more informed and focused care, concentrating on what truly matters to the patient's health and well-being.
- Beyond facilitating better dialogue, a symptom diary promotes self-awareness through monitoring and reflection, patients may notice patterns in their symptoms, identifying what exacerbates or alleviates their condition. This awareness is crucial in managing chronic illnesses like aspergillosis, as it empowers patients to make informed decisions about their health.
- A symptom diary can also play a role in developing personalised treatment plans. Each entry can help the clinical team better understand the patient's condition, enabling in some circumstances the creation of a treatment strategy that is as unique as the individual. This tailored approach can improve health outcomes, making a difference in the patient's quality of life.
Starting a symptom diary involves a few key practices: maintaining consistency in entries, attention to detail, and regularly reviewing the diary to identify trends or changes. What to record in a diary includes the date and time of each entry, detailed symptoms, ad hoc medication usage, environmental exposures, dietary intake, physical activity, mental health, and sleep quality.
In conclusion, a symptom diary is a powerful tool in managing chronic conditions, offering benefits such as improved communication with healthcare providers, increased self-awareness, empowerment, and the facilitation of personalised treatment plans. By taking control of their health information, individuals can navigate their journey with confidence and clarity, paving the way for a better quality of life.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Patient Reflection on Research: The Bronchiectasis Exacerbation Diary
[et_pb_section fb_built="1" theme_builder_area="post_content" _builder_version="4.24.2" _module_preset="default"][et_pb_row _builder_version="4.24.2" _module_preset="default" theme_builder_area="post_content"][et_pb_column _builder_version="4.24.2" _module_preset="default" type="4_4" theme_builder_area="post_content"][et_pb_text _builder_version="4.24.2" _module_preset="default" theme_builder_area="post_content" hover_enabled="0" sticky_enabled="0"]
Navigating the rollercoaster of chronic illness is a unique and often isolating experience. It is a journey that can be filled with uncertainties, regular hospital appointments, and a never-ending quest for a return to normal. This is so often the reality for individuals with chronic respiratory diseases, such as aspergillosis.
In this post, Evelyn embarks on a reflective journey, chronicling the evolution of her illness from childhood diagnosis to the present day, a timeline characterised by bilateral severe cystic bronchiectasis complicated by the colonisation of aspergillus and the less common scedosporium. For Evelyn, keeping a diary, noting symptoms, infections, and treatment strategies has been a way to make sense of the unpredictability of her health. This habit, instilled years ago by a forward-thinking consultant, transcends its practical utility, evolving into a critical tool for patient empowerment and self-advocacy.
When searching the web for help refining her symptom diary, Evelyn came across a paper titled: The Bronchiectasis Exacerbation Diary. This paper was a revelation of sorts. It cast light on often-overlooked aspects of the patient-experience and validated the often inexplicable symptoms that Evelyn experiences. It is evidence as to the power of patient-centered research and the impact of seeing lived experience acknowledged in scientific literature.
Evelyn's below reflection is a reminder of the broader implications of chronic illness on daily life and the need to adapt to navigate daily life.
As a result of a conversation with Lauren recently concerning the use of a symptom diary/journal, I came across a paper published on the internet, ‘The Bronchiectasis Exacerbation Diary’. Diagnosed in childhood with a chronic respiratory disease which has progressed throughout my life, I have bilateral severe cystic bronchiectasis with colonisation of aspergillus and the rarer fungi, scedosporium.
I have long been accustomed to keeping notes of symptoms/infections/treatment, having been encouraged to do so, many years ago, by a consultant for ease of reference at appointments. He emphasised treating infections should be dependent on the result of a sputum culture and sensitivity and not on a “Russian roulette” approach, as he called broad spectrum antibiotics; without knowing what type of infection was involved. Thankfully, my GP was co-operative, as at that time cultures were not routine. (I had dreaded acquiring a reputation as a bolshie patient!)
Reading the above mentioned paper was a revelation. It brought together the range of symptoms I experience daily, even some symptoms I felt were not appropriate to mention at clinic consultations. Moreover, I felt validated.
There have been occasions, albeit rarely, when I have doubted myself, none more so than when one clinician inferred I was psychosomatic. This was my lowest point. Thankfully, following this I was referred to a respiratory physician at Wythenshawe Hospital who, when a culture showed aspergillus, transferred me to Professor Denning’s care; as they say “every cloud has a silver lining”. Aspergillus had previously been found in a culture at another hospital in 1995/6, but not treated in the way it was at Wythenshawe.
Not only everyday symptoms were considered in the article, but also the immediate impact patients’ experience with daily living. Also, in a wider sense, the general impacts on our lives and the adjustments we all face in coping – all of which I can so easily identify with in my own life.
I felt so encouraged reading the paper as despite all of the various types of patient information leaflets I have read through the years, none were so comprehensive.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Thoughts on the Aspergillosis Journey Five Years On - November 2023
[et_pb_section fb_built="1" theme_builder_area="post_content" _builder_version="4.23.1" _module_preset="default"][et_pb_row _builder_version="4.23.1" _module_preset="default" theme_builder_area="post_content" custom_margin="50px|auto|50px|61px|true|false" custom_padding="0px|1px|0px|0px|false|false" width="90.7%"][et_pb_column _builder_version="4.23.1" _module_preset="default" type="4_4" theme_builder_area="post_content"][et_pb_text _builder_version="4.23.1" _module_preset="default" theme_builder_area="post_content" hover_enabled="0" sticky_enabled="0" width="99.9%"]
Alison Heckler ABPA
I have written about the initial journey and diagnosis before, but the ongoing Journey occupies my thoughts these days. From a Lung/Aspergillosis/ Breathing perspective, now that we are coming into summer in New Zealand, I feel I’m doing ok, looking and feeling well.
Some of my current Medical Background:-
I started the biologic, mepolizumab (Nucala), in September 2022 after a really difficult 12 months (another story). By Christmas, I was much improved and, from a breathing and energy perspective, had a good summer; although the weather was so bad, it was hardly a summer.
I got complacent about precautions, and in early February, a grandson visited with what turned out to be a nasty flu that I then went down with. 6 weeks later, a follow-up X-ray on the lungs showed a heart issue that needed a cardiologist to check “well the aortic stenosis isn’t a big worry but the aortic duct never healed over as a child. We could repair but …..” the answer to that was “I’m over 70, had four pregnancies, I’m still here & the risk factors with all my other issues ….. not going to happen”
Once finally over those two hiccups, my 81-year-old sister was admitted to the hospital, and I was trying to advocate for her. She got Covid, which I subsequently got from her. (I had done well to stay Covid Free for 2.5 years). But yet again, any infection I get these days takes much longer to recover from; I still had it at four weeks, and at 6-8 weeks, my GP was concerned that I might have developed Long Covid as my BP and heart rate were still a bit on the high side! My sister was diagnosed with Myeloma and died within six weeks of diagnosis.
Since starting the Mepolizumab, I had noticed increasing problems with incontinence, and this developed in a full-blown Pyelonephritis (eColi Kidney Infection). As I only have one kidney, the anxiety level over this was a bit high as the symptoms were/are all very similar to when my other kidney was eventually removed. (No plan B here). Toss-up: able to breathe versus learning to deal with some incontinence?
I overlay all of 2023 with ongoing Mental Health issues with my 13-14-year-old granddaughter, so my daughter and her husband, on whose property I live, were totally preoccupied with trying to keep her safe and all the care that she requires. We are all grieving the loss of this child who is now in care.
Pain levels are high, and energy levels are very low. Prednisone has essentially killed my cortisol production, so I have Secondary Adrenal Insufficiency and Osteoporosis.
But I am Thankful
I am so grateful that I am blessed to live in a country that has a Public Health System (be it a similarly crumbling one as NHS). I was able to move to an area that has a good teaching hospital and be close to my daughter (Palliative Care physician) & her husband (Anaesthetist), I have access to free public health medications and an excellent GP who listens, looks at the whole picture and does her best to get all the Specialist to review the situation. Recent x-rays and Dexta Scan revealed the extent of the damage and deterioration of the spin: Info I need to bring to the attention of the Physio who is trying to help with my motivation/activation of strengthening exercises. Endocrinology suggested a 5mg increase in my hydrocortisone and a pushing out of the dose timing, and that has made a HUGE difference in how I cope with dealing with all that is going on and the pain. Urology has finally accepted a referral to review my kidney situation, although it still might be a few months before they see me. A recent checkup with the Physio found that the exercises had made a difference, and I was considerably stronger in my legs. I still struggle to do these, but this information informs me that I need to persist.
The Biggest Battle is Mental Attitude
Each of our stories will be unique, and for each of us, the battle is real. (When I write mine all down, it does sound a bit overwhelming, but generally, I don’t think of it in that way. I have shared my story only as an example of the complexity of the journey.)
How do we cope with all of the changes that come upon us? I knew that my health would change as I got older, but I feel like it has come upon me so rapidly. I didn’t think of myself as old, but my body is most definitely thinking and behaving that way!
Learning to:
Accept the things I cannot change,
to Work on the things I can change,
And the wisdom to know the difference
This process of letting go of dreams and hopes and setting new, more modest goals has been important. I have learned that after a more strenuous activity (by my current abilities), I have to sit down and rest or do something that allows me to rest and be productive. I have previously been somewhat of a ‘workaholic’ and not much of a planner, so this transition has not been easy. All of these changes are a Grieving Process, and like any grief, we heal better if we acknowledge it for what it is, then we can learn to live with our grief. We can move forward into all the ‘new normals’. I now have a planning diary with notes on what I want/need to do, but it is not planned out in detail as I have to “go with the flow” as it were on how much energy I have available to get things done. The reward is that I will eventually get things ticked off. If it’s only 1 or 2 daily tasks, that’s ok.
When I finally got a diagnosis in 2019, I was told that “it was not lung cancer; it was ABPA, which is chronic and incurable but could be managed”. What ‘be managed’ entailed, I most definitely did not take in at the time. Every medication that we take is going to have a side effect; antifungals and prednisone are way up there in that respect, and it is sometimes the side issues that are more difficult to cope with. Mentally, I have to remind myself that I can breathe and haven’t died of secondary pneumonia because of the meds that keep the aspergillosis under control. I am alive because I manage my intake of Hydrocortisone every day.
Weighing up the benefits versus the side effects. There are some medications that once I studied the side effects and contraindications and weighed that info against the benefits for relieving Peripheral Neuropathy, I consulted with a Dr, and we dropped it. Other medications do have to stay, and you learn to live with the irritations (rashes, dry skin, extra back pain, etc.). Again, we are each unique in what we can manage, and sometimes, it is the attitude (stubbornness) with which we approach the situation that will determine our direction.
A note on stubborn…. Last year, I set myself the goal of getting my daily average walking distance back up to 3k per day. It was a bit of a mission when some days I wasn’t reaching 1.5K. Today, I managed a 4.5 flat walk on the beach and, more importantly, saw the daily average over the past 12 months get to 3k per day. So, I celebrate a win for as long as it lasts. I make clip-on pouches for my iPhone so that I always carry it to record my steps, and I recently purchased a Smart Watch that includes recording all my health data statistics. It is a new normal to track this stuff, and the NAC research Team is wondering if such data could help us predict ABPA flares etc.
For me, my faith in the sovereignty of God is paramount in keeping me focused and moving forward.
“He knit me together in my mother's womb. My days are ordered by his hand.” Psalm 139.
I have been saved by Grace, by Christ alone.
Yes, a number of my medical conditions could/will contribute to my death; we all die at some point, but I can live the best life I can now, knowing that God still has work for me to do.
“This world is not my home. I’m just a passing through.”
Talking with others on Teams Video and reading posts or stories on Facebook Support or the website all add to helping me keep positive. (At least most of the time) Hearing other people's stories helps to put my own back into perspective … I could be worse. So, as best I can, with the Lord’s help, I hope to encourage others to keep walking on the difficult road you sometimes find yourself on. Yes, it can be very difficult at times, but look at it as a new challenge. We are not promised an easy life.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Understanding Sepsis: A Patient's Guide
[et_pb_section fb_built="1" theme_builder_area="post_content" _builder_version="4.22.2" _module_preset="default" hover_enabled="0" sticky_enabled="0"][et_pb_row _builder_version="4.22.2" _module_preset="default" theme_builder_area="post_content"][et_pb_column _builder_version="4.22.2" _module_preset="default" type="4_4" theme_builder_area="post_content"][et_pb_text _builder_version="4.22.2" _module_preset="default" theme_builder_area="post_content" hover_enabled="0" sticky_enabled="0" custom_margin="0px|-91px||-69px||"]
World Sepsis Day, observed on the 13th of September, united individuals and healthcare professionals worldwide in the fight against Sepsis, which accounts for at least 11 million deaths globally every year. Various healthcare institutions, including the NHS and organisations like the Sepsis Trust, actively participated in spreading awareness about Sepsis, its early signs, and the importance of timely medical intervention.
Facts about Sepsis from the World Sepsis Day Website
CASES & DEATHS
- 47 to 50 million sepsis cases per year
- At least 11 million deaths per year
- 1 in 5 deaths worldwide is associated with Sepsis
- 40% of cases are children under 5
SEPSIS IS THE NUMBER ONE…
- …cause of death in hospitals
- …of hospital readmissions
- …healthcare cost
SOURCES OF SEPSIS
- Sepsis is always caused by an infection – like pneumonia or diarrheal illness
- 80% of sepsis cases occur outside of a hospital
- Up to 50% of sepsis survivors suffer from long-term physical and/or psychological effects
Understanding Sepsis
Sepsis occurs when the body's response to an infection results in damage to its own organs. If left untreated, Sepsis can lead to septic shock, a critical and often fatal condition.
Recognising the Symptoms: The symptoms of Sepsis can be remembered with the acronym 'SEPSIS':
- S: Slurred speech or confusion
- E: Extreme shivering or muscle pain
- P: Passing no urine (in a day)
- S: Severe breathlessness
- I: It feels like you're going to die
- S: Skin mottled or discoloured
If you or someone else is experiencing any of these symptoms, seeking medical attention is crucial.
Early Intervention is Key
Early recognition and treatment of Sepsis can significantly improve the chances of recovery. If you suspect Sepsis, it's crucial to get to the nearest NHS hospital or contact your GP immediately. The NHS is equipped to provide rapid assessment and treatment for Sepsis, which may include antibiotics and other supportive measures.
Preventing Infections
Preventing infections can reduce the risk of developing Sepsis. Ensure to:
- Keep vaccinations up to date
- Practice good hygiene, like handwashing
- Seek prompt medical attention for infections
Sepsis is a medical emergency that requires immediate attention. Understanding the signs and seeking prompt medical care can significantly improve outcomes. The NHS provides comprehensive care for sepsis patients, and it's crucial to utilise these resources if you suspect you or a loved one may be suffering from Sepsis. Through awareness and education, especially on platforms like World Sepsis Day, we can work together to reduce the impact of Sepsis and save lives.
For more information on Sepsis, you can visit:
- This page provides a detailed overview of the symptoms of Sepsis and its life-threatening nature.
- Information about who is more likely to get Sepsis and how to avoid infections.
Signs of Sepsis and What to Do (PDF) - NHS England
- An easy-read document detailing the symptoms of Sepsis and the steps to take if you suspect Sepsis.
Treatment and Recovery from Sepsis - NHS
- NHS information about treatments and recovery from Sepsis, post-sepsis syndrome, and where to get support.
Our Work on Sepsis - NHS England
- Information on the clinical policy and work being done on Sepsis by NHS England.
Easy-Read Information: Sepsis - NHS England
- Easy-read documents providing information about how to avoid Sepsis, spotting the signs of Sepsis, and problems after Sepsis.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
The Benefits of Peer Support
[et_pb_section fb_built="1" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
Living with chronic and rare conditions such as chronic pulmonary aspergillosis (CPA) and allergic bronchopulmonary aspergillosis (ABPA) can be a daunting experience. The symptoms of these conditions can be severe and have a significant impact on a person's daily life. The journey can be lonely and isolating, and it's common to feel like no one understands what you're going through. This is where peer support can be incredibly valuable.
Peer support is a way for people with a shared experience to connect and share their stories, advice, and coping strategies. It can be offered in various forms, including online support groups, peer mentoring programs, and in-person support groups. It allows people to feel understood, validated, and supported in a way that other forms of support cannot offer.
At the National Aspergillosis Centre (NAC), we understand the importance of peer support for people living with aspergillosis. While we offer advice and guidance on how to manage your condition, we recognise that much of the support comes from those with a lived experience of the condition.
Our virtual patient and carer support meetings are an excellent example of peer support in action. These meetings are hosted on Microsoft Teams twice a week and are open to everyone, not just those who are patients of NAC. These meetings provide a safe and supportive space for people to connect with others who understand what they're going through. They allow people to share their experiences, ask questions, and learn from others who have lived with the condition for a longer period.
Through these meetings, patients gain insight into coping mechanisms and strategies that help others live as normal a life as possible with their condition. We have seen many of our patients build lasting friendships with people who understand what they're going through.
So, if you are living with any type of aspergillosis, our peer support channels can be a valuable resource. Connecting with others who share your experience can provide benefits that are difficult to achieve through other forms of support. Our virtual patient and carer support meetings are an excellent place to start, and we encourage you to join us and see the benefits of peer support for yourself.
You can find out the details and sign up for our meetings by clicking here.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Loneliness and Aspergillosis
[et_pb_section fb_built="1" _builder_version="4.19.1" _module_preset="default" custom_padding="0px||0px|8px||" global_colors_info="{}" theme_builder_area="post_content" custom_margin="|59px||42px||"][et_pb_row _builder_version="4.19.1" _module_preset="default" custom_margin="50px|auto|50px|30px|true|false" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][et_pb_text _builder_version="4.19.1" _module_preset="default" custom_margin="|-124px||||" custom_padding="|0px||||" global_colors_info="{}" theme_builder_area="post_content"]
Believe it or not, loneliness is as bad for your health as obesity, air pollution or physical inactivity. Some studies put loneliness as equivalent to smoking 15 cigarettes per day.
In a recent poll in our Facebook patient group for people with chronic forms of aspergillosis 40% stated that they were lonely more than once per week and 75% of those stated that they were lonely every day. In total 73% recorded loneliness at least occasionally.
We also asked people who care for aspergillosis patients the same questions and this time 56% stated that they were lonely more than once per week, with 78% lonely at least occasionally.
Give those two poll results, are people lonely because they have a chronic illness that might restrict their socialising, and are they lonely because they look after someone with a chronic illness?
The level of loneliness in the general population in the UK is currently at 45%, so there are clearly more people who are lonely in both groups affected by aspergillosis (73% and 78%). Furthermore, 30% of those people who have chronic aspergillosis in our poll were lonely every day, which compares poorly with national statistics that show the number of people in the general population who are lonely as frequently as every day is only 5%.
Conclusion: There are six times as many people with chronic aspergillosis that are lonely every day compared with the general UK population!
Loneliness is clearly a big problem for people who either have chronic aspergillosis or care for someone with chronic aspergillosis.
What can we do about this?
Firstly, awareness of the problem is a big step forward. Awareness of its far-reaching consequences for our mental and physical health may provide some incentive to take action to try to change things. The campaign to end Loneliness (https://www.campaigntoendloneliness.org/the-facts-on-loneliness/) has found that those affected can be of all ages/genders/able or disabled/chronically ill or not and they aim to inspire everyone to connect and communities to come together to help. Nobody should be without company who wants it.
They also provide a lot of useful hints and tips on how to reduce your loneliness (https://www.campaigntoendloneliness.org/feeling-lonely/ ), how to connect with others a bit better, and reduce your health risks – if nothing else at the moment we all could do with getting together to keep warm! Regardless of why you feel lonely, we can all find a way to make connections no matter how fleeting – they all count.
Here at the National Aspergillosis Centre we hold weekly meetings for all patients both here in the UK and abroad
Zoom meetings are a casual and fun way to chat with fellow aspergillosis travelers and NAC staff (Tuesdays 2-3pm GMT and Thursdays 10 – 11am GMT) in which you can just sit and listen to us all chatting for an hour – all you need is a smartphone/tablet/laptop to join us.
The meetings are private so we do not give instructions on how to join on a public page such as this. For directions on how to get involved join one of the following groups and we will get back to you:
Of course some people are entirely happy on their own
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Managing Chronic Pain
[et_pb_section fb_built="1" _builder_version="4.19.1" _module_preset="default" custom_padding="3px|||2px||" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row column_structure="3_5,2_5" _builder_version="4.21.0" _module_preset="default" custom_margin="45px|auto|5px|auto|false|false" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="3_5" _builder_version="4.21.0" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][et_pb_text _builder_version="4.21.0" _module_preset="default" custom_margin="|-51px||||" custom_padding="|41px||||" global_colors_info="{}" theme_builder_area="post_content"]
Chronic pain is common amongst people with chronic respiratory diseases, and also amongst their carers; in fact it is one of the most common reasons for both to visit the doctor. At one time your doctor’s response might have been simple – check that the cause of the pain should clear up with intervention and then prescribe painkiller drugs to help the patient cope with the short period of pain. If the predicted period of pain is not going to be short they might continue to give you painkillers, but after a certain point we know that two things start to happen:
- The painkillers will start giving you side effects, some of which can be serious (eg. depression). The longer you are on the painkillers, and the higher the dose, the worse this can get.
- Some painkillers – especially those used to treat severe pain – start to lose their effectiveness if given over several weeks
[/et_pb_text][/et_pb_column][et_pb_column type="2_5" _builder_version="4.21.0" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][et_pb_image src="https://aspergillosis.org/wp-content/uploads/2023/05/managechronpain.jpg" title_text="managechronpain" align="right" _builder_version="4.21.0" _module_preset="default" custom_margin="|||-15px||" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_image][/et_pb_column][/et_pb_row][et_pb_row _builder_version="4.21.0" _module_preset="default" custom_margin="12px|auto|8px|auto|false|false" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.21.0" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][et_pb_text _builder_version="4.21.0" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]
Nowadays doctors are more likely to try and encourage patients to remain active, to remain at work and, depending on the source of the pain, might well recommend strengthening exercises (improved muscle tone and strength case help support a painful joint). This also helps the patient to socialise, reduces anxiety and the risk of depression, and can even reduce the pain itself.
But wait! You might ask: Won’t moving a painful joint cause more damage and therefore more pain? If done under medical supervision this is unlikely, and overall the pain usually improves and the dose of painkillers is reduced.
Find out more at: NHS – Managing chronic pain
[/et_pb_text][/et_pb_column][/et_pb_row][et_pb_row _builder_version="4.19.1" _module_preset="default" custom_margin="16px|auto|-5px|auto|false|false" custom_padding="31px|4px|40px|4px|false|true" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][et_pb_text _builder_version="4.21.0" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]
But what about the chest pain often experienced by people with respiratory illness?
Firstly it is important to stress that all chest pain needs to be examined by a doctor as there are several possible causes and some causes need immediate attention e.g. heart attack!
Some chest pain comes from sore bones, muscles and joints so, as we cannot avoid moving our chests during breathing, we tend to reduce movement for a while and take painkillers until the pain is reduced. But, just as written above, your doctor may start to use a variety of approaches to keep your chest moving, build up the muscles to help prevent future pain, and reduce painkiller dose – the same as with any other joint pain.
Find out more at: NHS Chest pain
How can I reduce my dose of painkillers?
There are several techniques that will help you feel more in control of the amount of pain you are in – some are mentioned in the above link, managing chronic pain. Several exploit a little known fact about pain, which most of us will take some convincing of. Our pain is not generated by injury, it is generated by our brains as a defensive mechanism. That suggests that the amount of pain we feel is not inevitable, we might be able to control it a little by using our brains!
Not convinced? Try watching this video recommended by one of our patients, which helped her understand that we can do something to reduce our pain, and possibly even reduce our dose of painkillers.
[/et_pb_text][et_pb_video src="https://www.youtube.com/watch?v=5p6sbi_0lLc" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_video][/et_pb_column][/et_pb_row][/et_pb_section]
Recognising and avoiding depression
[et_pb_section fb_built="1" _builder_version="4.19.1" _module_preset="default" custom_margin="-32px|||||" custom_padding="28px|||0px||" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row _builder_version="4.19.1" _module_preset="default" custom_padding="3px|3px|3px|3px|true|true" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][et_pb_text _builder_version="4.19.1" _module_preset="default" custom_margin="|-50px||-54px||" global_colors_info="{}" theme_builder_area="post_content"]
People who have chronic illnesses such as ABPA & CPA are very vulnerable to anxiety and depression. These are not superficial illnesses in themselves, and they can be very serious and even life threatening in some cases, if neglected. It is important that we remove the stigma that has long been a part of depression – partly from those who would seek to devalue people who suffer from depression, and partly from the people themselves. Depression is very common.
Recognising Depression – Common Symptoms
The mental health charity, Mind, has produced this extensive guide to understanding depression. It’s full of useful information and contacts, so is well worth a read if you think you, or someone you know, might be experiencing the symptoms of depression. Some of the most common symptoms they identify are copied below:
This NHS page also gives a good overview of depression; recognising the symptoms in yourself, and the various treatment options available.
Depression and chronic illness
This WikiHow article is very good at describing how we can fight back against depression due to chronic illness – the first part of which is acceptance, and then developing your personal tools to beat depression. Building effective personal management tools is very important in this battle; apathy or lack of acceptance will contribute to making depression worse, because if we fail to recognise the symptoms (in ourselves or others), we will fail to build our defences against it.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Living with CPA and ABPA
[et_pb_section fb_built="1" _builder_version="4.18.0" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content" custom_padding="8px||2px|||"][et_pb_row _builder_version="4.18.0" _module_preset="_initial" custom_margin="-21px|auto||auto||" global_colors_info="{}" theme_builder_area="post_content" custom_padding="40px|0px|40px|0px|true|true"][et_pb_column type="4_4" _builder_version="4.18.0" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][et_pb_text _builder_version="4.18.0" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]
Gwynedd was formally diagnosed with CPA and ABPA at the National Aspergillosis Centre in 2012. Below she lists some of the symptoms she experiences and what she has found helpful in managing the conditions.
These symptoms fluctuate and can be very insignificant until a flare-up occurs. Then they can be severe enough to alter what I can do in a day.
- Tightening of the chest and or upper airway.
- Inflammation can be felt as heat and a 'zingyness' in my chest.
- Pain and discomfort over my back in my lungs.
Self-help
- A healthy diet, as recommended by the dietetic society or as guided by a consultant or specialist nurse.
- Extra protein where one is underweight.
- Exercise is essential for my mental well-being and helps me with chest clearing.
My local respiratory consultant firmly believes in the benefits of Yoga and slower breathing to help with chest clearance and relaxation, which reduces inflammation and anxiety and aids the immune system.
Anxiety is a side effect of ABPA & CPA as both conditions are debilitating, and fluctuations occur seemingly with no warning. It is not unreasonable to feel anxious about this diagnosis. Treatments help, as do lifestyle changes.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
