Managing Chronic Pain
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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
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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
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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.
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Plugs and Slugs
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People who have aspergillosis tend to cough up characteristic mucoid plugs often when being given oral steroids. These can take many shapes and forms and be different colours depending on what they contain – some can have hard objects within them, others can be very thick/hard on general consistency.
These can be a helpful sign for a diagnosis, so we thought is would be useful if we collected a small library of images for clinicians to refer to, which we will publish here. Patients could also use them to show to your doctor as examples of the kind of thing they are also coughing up.
Images have helpfully been donated by members of the National Aspergillosis Support UK Facebook group.
Contact us if you have examples you would like us to include.
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Rare disease patient journey to diagnosis
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A map aspergillosis patients may be all too familiar with!
https://twitter.com/eurordis/status/1269906129364156416
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ISHAM Award for Prof Malcolm Richardson
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Founded in 1954, the International Society for Human and Animal Mycology (ISHAM) is a large worldwide organisation that represents and supports all doctors and researchers that have an interest in Medical Mycology - which includes aspergillosis as well as all fungal disease.
Fungal diseases are generally not given the attention that they deserve from medical authorities so it is vital that diagnostics and research are supported internationally, especially where health services, so the work of ISHAM is particularly valuable.
The immense contribution of medical mycology diagnostics specialist and former Director of the Mycology Reference Centre Manchester Prof Malcolm Richardson to the work of ISHAM has been recognised at the recent ISHAM conference in New Delhi, September 2022.[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Mycology Reference Centre Manchester Director (retired) Prof Malcolm Richardson Honoured
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The British Society for Medical Myology (BSMM) has a long and distinguished history in the advancement of education and the promotion of research in all branches of medical and veterinary mycology over the last 69 years (www.bsmm.org), so it is a great honour to be elected to be its President. Prof Richardson follows an illustrious list of fellow medical mycologists who have served as President of BSMM since 1964.
Professor Malcolm Richardson built and ran the highly specialised mycology laboratories at the Mycology Reference Centre Manchester since its inception alongside the National Aspergillosis Centre at the Manchester University NHS FT in 2009 until his retirement in 2020, and still serves the centre as its Consultant Clinical Scientist in Medical Mycology. He has an extensive list of publications, positions and achievements - for more details click here.
Prof Richardson commented "I feel very honoured to be elected as President, having been a BSMM member for 50 years", and it is particularly fitting that the Presidency comes to Manchester as the annual scientific meeting of the BSMM is to take place in the city in May 2023.
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Why does someone with chronic disease feel so tired?
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Ashley explains how fatigue affects your psychological wellbeing, and how to manage thoughts and feelings.
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Most people with a chronic illness will be all too familiar with how tired it makes them feel. Fatigue is a prominent and debilitating symptom of aspergillosis and recent research is starting to show why this is.
We are often asked why someone with aspergillosis feels so tired and up till now our usual answer would be that when your immune system is working hard it tires you out much like if you had run a km or two that day – the effort needed is similar and you are exhausted. Recent research gives us a slightly different picture. As your body responds to an infection one of the things that your immune system can do is to directly put you to sleep to help your recovery!
Molecules called cytokines are produced in response to inflammation (eg infection) and one of their functions is to stimulate drowsiness and sleep. Furthermore once asleep your immune system really gets to work on the infection – focusing your energy on fighting the infection, and promoting fever.
We are aware that some medications make good sleep difficult/impossible at times and anxiety plays its part too. If you mention this to your GP you may get a referral to one of the many NHS Sleep clinics in the UK who can help problems with getting asleep/staying asleep https://www.nhs.uk/…/Sleep-Medicine/LocationSearch/1888
Hints and tips for getting a good sleep
Hints and tips on how to manage the psychological impact of fatigue
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The importance of detecting cancer early
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Our focus at the National Aspergillosis Centre is to raise awareness and support those with aspergillosis. Still, it is vital as an NHS organisation that we raise awareness of other conditions because, sadly, a diagnosis of aspergillosis does not make you impervious to everything else, and a chronic illness has the potential to mask the symptoms of other conditions like cancer.
The ever-growing pressure on the NHS, increased waiting times, a growing reluctance amongst many to seek medical attention, and a lack of understanding of the common symptoms of many cancers are all factors that can lead to an extended diagnostic interval, which in turn reduces treatment options. Therefore, earlier recognition of symptoms by patients is crucial in mitigating other factors that delay diagnosis.
It is important to note that not all alarm symptoms are cancer. Still, cancer incidence and mortality projections estimate that 1 in 2 people in the UK will be diagnosed with cancer in their lifetime(1), so last week at our monthly patient meeting, we talked about cancer and the most common symptoms. Inspired by the incredible work of the late Dame Deborah James on raising awareness and breaking down the taboo attached to bowel cancer, we have compiled the content from that talk into one article.
What is Cancer?
Cancer starts in our cells.
Usually, we have just the right number of each type of cell. This is because cells produce signals to control how much and how often the cells divide.
If any of these signals are faulty or missing, cells might start to grow and multiply too much and form a lump called a tumour.
Cancer Research UK, 2022
Cancer Statistics
- Every two minutes, someone in the UK is diagnosed with cancer.
- Breast, prostate, lung and bowel cancers together accounted for over half (53%) of all new cancer cases in the UK in 2016-2018.
- Half (50%) of people diagnosed with cancer in England and Wales survive their disease for ten years or more (2010-11).
- Cancer is the cause of 27-28% of all deaths in England in a typical year.
Experts believe abdominal cancers - throat, stomach, bowel, pancreatic, ovarian - and urological cancers - prostate, kidney and bladder - are the most likely to go unrecognised.
The above chart shows cancer diagnoses by stage for some cancers in 2019 (the most current data). The stage of cancer relates to the size of the tumour and how far it has spread. Diagnosis at a later stage is related to lower survival.
Breast Cancer - Symptoms
- A lump or thickening in the breast which is different to the rest of the breast tissue
- Continuous breast pain in one part of the breast or armpit
- One breast becomes larger or lower/higher than the other breast
- Changes to the nipple - turning inward or changes shape or position
- Puckering or dimpling to the breast
- Swelling under the armpit or around the collarbone
- A rash on or around the nipple
- Discharge from one or both nipples
For more information visit:
https://www.breastcanceruk.org.uk/
https://www.cancerresearchuk.org/about-cancer/breast-cancer
Kidney Cancer - Symptoms
- Blood in the urine
- Low back pain on one side not through injury
- A lump on the side or lower back
- Fatigue
- Loss of appetite
- Unexplained weight loss
- Fever that is not caused by an infection and that doesn't go away
For more information visit:
https://www.nhs.uk/conditions/kidney-cancer/symptoms/
https://www.cancerresearchuk.org/about-cancer/kidney-cancer/symptoms
Lung cancer
The symptoms of lung cancer can be particularly hard to differentiate for patients with aspergillosis. It is important to report any new symptoms, such as a change to a long-term cough, weight loss and chest pain to your GP or specialist consultant.
Symptoms
- A persistent cough that doesn't go away after 2/3 weeks
- A change in your long-term cough
- Increased and persistent breathlessness
- Coughing up blood
- An ache or pain in the chest or shoulder
- Repeated or persistent chest infection
- Loss of appetite
- Fatigue
- Weight loss
- Hoarsness
For more information visit:
https://www.nhs.uk/conditions/lung-cancer
https://www.cancerresearchuk.org/about-cancer/lung-cancer
Ovarian Cancer - Symptoms
- Persistent bloating
- Feeling full quickly
- Loss of appetite
- Changes in bowel habits
- Unexplained weight loss
- Pelvic or abdominal pain
- Needing to wee more frequently
- Fatigue
For more information visit:
https://www.nhs.uk/conditions/ovarian-cancer/
Pancreatic Cancer
Some of the symptoms of pancreatic cancer can closely resemble those of bowel conditions such as irritable bowel. See your GP if your symptoms change, get worse, or do not feel normal for you.
Symptoms
- Yellowing to the whites of your eyes or skin (jaundice)
- Itchy skin, darker pee and paler poo than usual
- Loss of appetite
- Fatigue
- Fever
Other symptoms can affect your digestion, such as:
- Nausea and vomiting
- Changes in bowel habits
- Stomach and/or back pain
- Indigestion
- Bloating
For more information visit:
https://www.nhs.uk/conditions/pancreatic-cancer
https://www.cancerresearchuk.org/about-cancer/pancreatic-cancer
https://www.pancreaticcancer.org.uk/
Prostate Cancer - Symptoms
- Urinating more frequently, often during the night (nocturia)
- Increased urgency to urinate
- Urine hesitancy (difficulty starting to urinate)
- Difficulty in passing urine
- Weak flow
- Feeling that your bladder has not emptied fully
- Blood in urine or semen
For more information visit:
https://www.nhs.uk/conditions/prostate-cancer
https://www.cancerresearchuk.org/about-cancer/prostate-cancer
Skin Cancer
Patients who are on antifungal medication are at an increased risk of developing skin cancer, therefore it is important to understand the symptoms and take adequate precautions with sun exposure to reduce the risk.
Symptoms
There are three main types of skin cancer:
- Malignant Melanoma
- Basal Cell Carcinoma (BCC)
- Squamous Cell Carcinoma (SCC)
Broadly, the signs are (shown in the image below):
BCC
- Flat, raised or dome-shaped spot
- Pearly or skin-coloured
SCC
- Raised, crusty or scaly
- Sometimes ulcerated
Melanoma
- An abnormal mole that is asymmetrical, irregular and has multiple colours
For more information visit:
https://www.cancerresearchuk.org/about-cancer/skin-cancer
https://www.nhs.uk/conditions/melanoma-skin-cancer/
https://www.nhs.uk/conditions/non-melanoma-skin-cancer/
Throat Cancer
Throat cancer is a general term that means cancer that starts in the throat, however, Doctors don't generally use it. This is because there are different types of cancer which can affect the area of the throat.
More information can be found here: https://www.macmillan.org.uk/cancer-information-and-support/head-and-neck-cancer/throat-cancer
General symptoms
- Sore throat
- Ear pain
- Lump in the neck
- Difficulty swallowing
- Change in your voice
- Unexplained weight loss
- A cough
- Shortness of breath
- A feeling of something stuck in the throat
For more information visit:
https://www.nhs.uk/conditions/head-and-neck-cancer/
Bladder Cancer - Symptoms
- Increased urination
- Urgency to urinate
- A burning sensation when passing urine
- Pelvic pain
- Flank pain
- Abdominal pain
- Unexplained weight loss
- Leg swelling
For more information visit:
https://www.nhs.uk/conditions/bladder-cancer/
https://www.cancerresearchuk.org/about-cancer/bladder-cancer
Bowel Cancer - Symptoms
- Bleeding from the bottom and/or blood in poo
- A persistent and unexplained change in bowel habit
- Unexplained weight loss
- Fatigue
- A pain or lump in the stomach
For more information visit:
https://www.bowelcanceruk.org.uk/about-bowel-cancer/
https://www.cancerresearchuk.org/about-cancer/bowel-cancer
(1)Smittenaar CR, Petersen KA, Stewart K, Moitt N. Cancer incidence and mortality projections in the UK until 2035. Br J Cancer 2016 Oct 25;115(9):1147-1155
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Aspergillosis and Fatigue
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People who have chronic respiratory illness frequently state that one of the main symptoms that they find difficult to cope with is perhaps one that doesn’t leap to mind as a major problem for most of us who do not have a chronic illness – fatigue.
Time and time again people who have aspergillosis mention how exhausted it makes them feel, and here at the National Aspergillosis Centre we have determined that fatigue is a major component of chronic pulmonary aspergillosis (CPA – see Al-Shair et. al. 2016) and that the impact of aspergillosis on a patients quality of life correlated well with the level of fatigue suffered.
There are many possible causes of fatigue in the chronically ill: it could partly be a result of the energy that the immune system of a patient puts into fighting off the infection, it could partly be a consequence of some of the medication taken by people who are chronically ill and possibly even the result of undiagnosed health problems such as anaemia, hypothyroidism, low cortisol or infection (e.g. long COVID).
Because of the many possibilities that cause fatigue, your first step in trying to improve the situation is to go and see your doctor who can check for all common causes of fatigue. Once you have established that there are no other possible hidden causes you might read through this article on fatigue produced by NHS Scotland containing lots of food for thought and suggestions to improve your fatigue.
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Singing for lung health
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Want to try therapeutic singing?
You may be lucky and find a lung health group locally, however, you don't have to leave your home to benefit (sessions are run on Zoom), AND you don't have to be a patient either as the groups are also open to carers.
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Monkeypox outbreak
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What is Monkeypox?
How is monkeypox spread?
Symptoms
- fever
- headache
- muscle aches
- backache
- swollen lymph nodes
- shivering
- exhaustion
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