POEMS
Welcome to our POEMS Information Hub
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POEMS syndrome is a rare disorder with a range of features, including Peripheral Neuropathy (damage to the nerves) and abnormal Immune Cells called Plasma Cells.
The exact causes are not well understood. Symptoms can affect many parts of the body. Treatment will depend on how localised the abnormal Plasma Cells are, and may include Radiotherapy, Stem Cell Transplantation, and various drugs treatments often used in combination.
Outlook for patients after treatment has increased greatly over the past few years.
Let's dive into this in a little more detail, or click a header to go directly to a section.
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What is POEMS Syndrome?
POEMS is a rare disorder than affect affect multiple systems in the body. It is named after five common features of the syndrome.
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Polyneuropathy​
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Also known as Peripheral Neuropathy, Polyneuropathy is nerve​ damage to various Peripheral Nerves. Your Peripheral Nerves are all those nerves outside of your brain and spinal cord (the Central Nervous System) that transmit signals to control muscles, movement, touch, and sensation. This network of nerves is known as the Peripheral Nervous System.
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Organomegaly
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The enlargement of organs, such as the liver, spleen, or lymph nodes.
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Endocrinopathy ​
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Abnormal function of Endocrine Glands. Your Endocrine Glands are responsible for hormone production. These hormones regulate various bodily functions, including metabolism, growth, reproduction, and mood.
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Monoclonal Plasma Cell Disorder​
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Disorder involving abnormal plasma cells. We'll break this down at the foot of this section.
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Skin Changes
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Certain skin changes are characteristic in POEMS syndrome, including Hyperpigmentation. Hyperpigmentation is the darkening of an area of skin.
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The above are the most common features of the syndrome, however there are also a range of other features (or 'criteria') that may occur in POEMS. Not every patient will have these, but it is important for you and/or your health care provider to look for:
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Bone Growth​
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Abnormal (“sclerotic”) bone growth may occur in certain parts of the skeleton. They are typically painless but are usually visible on X-rays and scans.
Optic Nerve Swelling
Swelling of the optic nerve, the main nerve in the eye (known as Papilloedema).​
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Fluid Build Up ​​​
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Fluid build-up around the lungs, in the abdomen and/or the legs.
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High Cells
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High red blood cell levels and/or high platelet levels in the blood.
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Cytokine ​
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Raised levels of a cytokine (chemical messenger) in the body known as Vascular Endothelial Growth Factor (VEGF). VEGF is one of the more common impacts of POEMS and occurs in most patients.
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Castleman Disease
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Castleman Disease is a type of Lymph Node disorder that can range in severity and causes a range of symptoms, including swollen Lymph Nodes (neck, armpit, groin, chest, abdomen), fatigue, fever, night sweats, weight loss, rash, shortness of breath, enlarged liver/spleen. Depending on the type of Castleman Disease, treatment can include removal of the impacted node, or a customised drug based treatment plan.
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Also Known As
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POEMS syndrome can also be known as
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Osteosclerotic Myeloma
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Takatsuki Syndrome
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Crow-Fukase Syndrome
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However, these terms are increasingly less commonly used.
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What is a Monoclonal Plasma Cell Disorder?
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A Plasma Cell disorder is the term used to describe a condition which produces abnormal Plasma Cells.
Plasma cells are a type of white blood cell that produce antibodies (immunoglobulins). Antibodies bind to substances in the body that are recognised as foreign, such as bacteria and viruses (known as antigens), enabling other cells of the immune system to destroy and remove them.
In Monoclonal Plasma Cell Disorders, large numbers of identical Plasma Cells are produced.
These cells produce an abnormal antibody known as Paraprotein (also called Monoclonal or M protein) which has no useful function.
In POEMS syndrome, the abnormal Plasma Cells may be located in one or more specific areas of the Bone Marrow (termed ‘Plasmacytomas’), or may be present throughout the Bone Marrow. The number of abnormal Plasma Cells in the bone marrow is generally small, and M Protein levels are also generally low.
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Causes and Symptoms of POEMS?
What causes POEMS?
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We know it's frustrating to read - but the simplest answer is we don't fully know yet. The exact causes of POEMS syndrome are not well understood.
The Paraprotein (see the previous section and Monoclonal Plasma Cell Disorder) produced by the Abnormal Plasma Cells is not enough to explain the many features and impacts of POEMS.
Various Cytokines are thought to play a role in causing damage to the different tissues and organs involved in the syndrome. This includes the Cytokine VEGF that is found in higher levels in POEMS syndrome patients.
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Who can develop POEMS syndrome
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How many people get it?
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POEMS syndrome is very rare, so rare in fact that we don't even know the incidence level. We normally say MMN (another of the conditions we support) impacts 0.6 people per 100,000, or CIDP impacts 1-2 per 100,000. With POEMs, we don't have that data available.
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However, it is thought many more cases remain unrecognised and undiagnosed. This is due to the rarity, the wide range of signs and symptoms, and the fact that patients may be seen by different doctors who are unfamiliar with the syndrome.
That means the overall numbers may be higher.
Average age?
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The average age of diagnosis is in people in their 50s, however this can range from 30–80 years old.
Gender?
POEMS syndrome is more common in men than in women.
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Symptoms
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The most common symptoms result from the Peripheral Neuropathy associated with the syndrome. Peripheral Neuropathy is often the most debilitating feature of POEMS syndrome.
The first signs of Peripheral Neuropathy include numbness and tingling in the hands and feet which progressively worsens over time.
Pain, discomfort, and weakness may accompany this, and are common features of POEMS. Weakness is often an early symptom.
Other symptoms vary depending on the organ systems involved and can include:
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Weight loss
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Diarrhoea
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Enlargement of the Lymph Glands (also known as Lymph Nodes)
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Fluid build-up in the feet and ankles
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Increased sweating
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Skin changes, including: thickening of the skin
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Red or purple spots on the surface on the skin
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An increasing amount of hair on the arms and legs which is often coarse in texture
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Swelling of the fingertips and white nails (known as ‘clubbing’)
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Breathlessness
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Fatigue
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Headaches or blurred vision
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Reduced sexual function (reduced libido, loss of erections)
Patient may also be at increased risk of Deep Vein Thrombosis (blood clots in the deep veins of the body, typically the legs).
Patients may have fewer symptoms at diagnosis but develop more symptoms over time as the syndrome progresses.
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How is POEMS syndrome diagnosed?
It's important to remember that not all of the criteria referred to in the name “POEMS” (Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal plasma cell disorder and Skin changes) are always present.
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POEMS syndrome may be diagnosed if the patient has all of the following:
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Polyneuropathy
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Monoclonal plasma cell disorder
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One or more of the other “major criteria” of the POEMS syndrome (sclerotic bone lesions, raised VEGF and Castleman disease)
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One or more of the other criteria (such as hormone changes or skin changes).
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(for more information on these criteria, see the What Is POEMS section of this info hub).
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To confirm a diagnosis, your doctor will need to perform a thorough physical examination where they will look for the following:
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Skin and hair changes
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Do you have hyperpigmentation (darkened skin), thickened or hardened skin, excess hair growth (or loss), redness or unusual skin texture. They may also look for changes to your nails.
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You may be asked when the changes started, and if they are progressing (get worse/more noticeable), and if there is itching or pain in the impacted areas.
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Evidence of fluid build-up
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Your doctor will likely be looking at three key areas.
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Your lungs - they will likely listen to your chest with a stethoscope to monitor for fluid build up in your lungs
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Lower limbs - They will pay close attention to your ankles, lower legs, and feet.
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Abdomen - They will examine your stomach area, like your lower limbs, this may involve gentle pressing or manipulation of the area. If you feel any pain during this, it should be mentioned to the doctor.
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Enlargement of specific glands and organs such as lymph glands, liver and/or the spleen
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This will likely be through a hands-on examination. The doctor will exam/feel the lymph nodes in the neck, armpits, and in some cases groin. Remember, as with any physical examination, you can ask for a trusted partner, family member, friend, or care giver to accompany you for support.
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By manipulating your stomach/abdomen, they can also get a rough idea if your liver or spleen is enlarged.
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You may be asked about unexplained weight loss or gain, and feeling unusually full or uncomfortable.
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Signs of optic nerve swelling
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To examine your eyes, your doctor will likely perform an Ophthalmoscopy - or simply put, they will look in your eyes with a handheld light. This can be a little uncomfortable, but think of it like a trip to the optician.
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Signs of neuropathy by conducting a complete examination of the nervous system
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There are a number of tests a doctor may carry out immediately:
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motor testing (checking the strength and movement of your arms and legs)
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sensory testing (light touch, pin prick, in some cases hot and cold tests)
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reflexes (knee, ankle)
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gait and balance (walking normally, heel-to-toe walking)
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But they may also request specialist tests such as Neve Conduction Studies (measuring how fast an electrical pulse travels through your nerves) and EMGs (fine needle electrodes inserted directly into muscle tissue to measure activity at rest and during contraction).
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Most people in the Inflammatory Neuropathies community will, at some stage, undergo a Nerve Conduction Study as part of their diagnosis. If you have any concerns about these or EMGs, please join our Facebook group (GBS/CIDP/MMN/Inflammatory Neuropathies UK Community) where you can talk to people who have experienced it first hand.
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Along with the physical exam, your doctor will also administer a blood test​
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Checking for:
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Your levels of white blood cells, red blood cells and Platelets
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Your liver and kidney function, and function of your Endocrine Glands
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If Paraprotein is present
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The level of certain Cytokines including VEGF
And may also request are urine test
..for the presence of part of the Paraprotein called Light Chains (also sometimes called Bence Jones Protein)
And X-rays and scans
..to look for abnormal bone growth or bone damage
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Biopsies and other tests
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A bone marrow biopsy, or a biopsy of any individual bone lesions (plasmacytomas) identified on scans, may be performed to look for the presence of abnormal plasma cells ​
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As previously mentioned, A Nerve Conduction Study may be performed to assess nerve function and damage ​
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A lumbar puncture may be performed to look for high levels of protein in the spinal fluid
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We know all this seems like a lot, but please keep in mind that the sooner treatment is started, the better the outcome.
How is POEMS treated?
It is important that treatment is started as soon as possible, because progression of the condition is rapid without treatment and can be fatal.
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Treatment improves symptoms but may not cure the underlying condition. This means that while you may still be living with POEMS, you may find the symptoms themselves are not as prominent.
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Treatment of POEMS syndrome will depend on several factors:
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Whether the underlying Plasma Cell Disorder is widespread in the bone marrow, or at a specific location (a Plasmacytoma)
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The main symptoms present and organs affected
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Age and general fitness of the patient
Treatment may include chemotherapy and/or radiotherapy. Some patients will be given stem cell transplantation. The treatments are similar to those used in other plasma cell conditions, including Solitary Plasmacytoma and Myeloma.
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Let's break down the treatment methods in some more detail:​​
Radiotherapy
You will typically receive Radiotherapy treatment if you have an abnormal bone growth in just one or two areas of the bone, but no evidence of abnormal Plasma Cells spread throughout your Bone Marrow. You will be assessed by a Radiotherapy specialist who will decide on the exact amount and number of treatments needed. You may be given drug treatment in addition to Radiotherapy.​
Stem Cell Transplantation
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You may be considered for High-Dose Therapy and Stem cell Transplantation (HDT-SCT) if the abnormal Plasma Cells are widely spread throughout your Bone Marrow, and if your age and fitness make this suitable for you. You will be given high dose Chemotherapy (often Melphalan) before the Stem Cell Transplant, and additional drug treatments before or afterwards.
A reaction called “Engraftment Syndrome” can occur after HDT-SCT, with symptoms such as fever, weight gain and skin symptoms, and is treated with steroids.
Drug treatment
If the abnormal Plasma Cells are more widely spread throughout your Bone Marrow, and you are not able to undergo HDT-SCT, it is likely that you will receive a combination of different types of drugs which work together. The most common types of drugs used to treat POEMS syndrome are:
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An alkylating agent which is a type of chemotherapy drug
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A steroid
These drugs may also be combined with drugs used to treat the underlying Plasma Cell Disorder.
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The choice of treatment and dose will take into account side effects which can be problematic in POEMS syndrome (including neuropathy and increased risk of thrombosis).
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Treatment is effective in the majority of patients, but improvement is normally gradual. Once there is evidence of an improvement in symptoms, quality of life and day-to-day functioning, it is recommended that patients are referred for a period of rehabilitation, preferably at a specialist rehabilitation centre, to allow nerve and muscle function to improve.
Nerve pain is common in POEMS syndrome and is often treated with drugs.
Pain caused by nerve damage can be difficult to treat or manage and may require input from a pain specialist or palliative care.
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A note on drug names: due to restrictions around Google Ads and Search Engine Placement, we can't list all the brand names of the drugs you may be offered. Your doctor can go into more detail but if you'd like to know more, please email us and we can the names directly.
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How is POEMS monitored?
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POEMS syndrome patients should be monitored regularly and the type of treatment you receive will determine the frequency of hospital visits.
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After initial treatments are complete, patients are seen regularly for physical examinations and blood tests. Patients are likely to receive other ongoing assessments such as Nerve Conduction Tests and scans.
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If you ever have concerns between appointments, contact your consultant straight away.
Relapse
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In the event of relapse, patients generally do well after further treatment.
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Outlook
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With treatment, ​the outlook for patients with POEMS syndrome has improved greatly in
the last few years.
In a study of 100 POEMS patients in the UK, the 10-year survival was 82% (or 82 in 100 patients).
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POEMS
Advice for Carers
Diagnosis of a rare and chronic condition can bring mixed emotions.
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On one hand, it's quite normal to feel relieved to have an answer. On the other, learning someone important to you has a life-long illness can be daunting. Especially if you will be acting in the role of carer.*
On this page we have some practical suggestions that can help you in this new role, and some help contact details and/or resources you may wish to access.
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Quick Fact: Informal/Unpaid Carer
The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction”. This means, even if your loved one only needs a hand during a spike of their symptoms, or a lift to hospital for treatment, you're acting as a carer.
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These options may not be applicable to your or your loved one, but it's useful to know that help is available.
Ask for a needs assessment for the person you’re caring for
You need this before the council can recommend services such as equipment, home adaptations, help from a paid carer, etc.
Get a carer's assessment
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This can be requested at the same time as a needs assessment, via social services at your local council.
Don’t be afraid to ask for help
Ask family and friends (shopping, respite, etc), and contact carers’ organisations or Citizens Advice for benefits advice and other support.
Look after yourself
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Eat a healthy diet, maintain a regular sleep pattern and make time for exercise, preferably in the fresh air or at your local gym or pool, away from the care setting.
Remember to rest
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Put some activities on hold. Take some time for yourself by arranging respite care from a friend or relative, or through social services.
Recognise limitations
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Both those of the person you’re caring for and your own. Let them try to do things for themselves if they are able, but bear in mind their safety and yours.
Look after your mental health​
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Talk to each other about your experiences and frustrations during illness and recovery. Talk to your GP if either of you is struggling.
Be mindful of risks​
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Be aware of risk of falls due to poor balance, and dropping or spilling things due to weakness.
Diet and exercise​
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If you or the person your caring for has symptoms around the abdomen, it may be uncomfortable eating or drinking too much. Similarly, certain treatments - particularly chemotherapy as part of Stem Cell Transplantation - can have a significant impact on appetite along with side effects like nausea. You may receive advice from a dietitian, or you can ask to speak to someone if not. Some find meal replacement drinks/shakes useful as a quick way to absorb calories and nutrients during treatment.
Bone growth, along with neuropathy, can cause difficulties exercising. Speak to your consultant first for their recommendations. However, many in the Inflammatory Neuropathies community enjoy swimming as a low impact way to exercise.
Don't lose sight of your relationship​
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Whatever your relationship is to the person you’re caring for, make time for it. Do things together that you both enjoy and that feel ‘normal’.
Get in touch with Inflammatory Neuropathies UK​
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We provide information and support, organise peer support via phone or video link, virtual group chats, and run an active and supportive Facebook group.
Other sources of support
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Looking after someone you love doesn’t have to mean struggling alone. There are organisations out there who offer advice and practical support to carers, so reach out and see what help is available to you.
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NHS advice
Carers UK
Carers Scotland
Carers Wales
Carers Northern Ireland
Family Carers Ireland
Carers Trust
Help for young carers
Citizens Advice UK
Citizens Information RoI
Find your local social services
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England
Scotland
Wales
Northern Ireland
Republic of Ireland
Mental Health, Well-Being, and Work following POEMS diagnosis
This section will provide useful links and sources to help support your mental health during POEMS. If you’re a carer or have experienced a loved one going through an illness it can also be a traumatic time, and these links may also help you.
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We also discuss getting back to work and how to communicate with your employer.
Click one of the headers below to access the information directly:
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Back To Work: After a Long Absence
Back To Work: Making Reasonable Adjustments
Back To Work: Pay During A Phased Return To Work
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Mental Health & Wellbeing
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With all the changes in your health it is not uncommon to feel anxious or angry, and this can even be helpful to a degree in providing the mental and physical energy that is needed to anticipate and tackle problems. An acute stress reaction is recognised as being a normal part of the process of adjusting to a life change, and it can often help to talk things through with a partner or close friend. However, please seek advice and help from your GP if you are finding it difficult to cope or to sleep, or if you are feeling overwhelmed emotionally.
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The impact of being severely affected by a sudden, frightening and potentially life-changing condition such as POEMS can leave people with symptoms of PTSD (post-traumatic stress disorder). It can develop immediately, or many months or even years after a traumatic event. If you are concerned about low mood, irritability, panic attacks, anxiety, flashbacks, physical sensations such as trembling or sweating, poor concentration or sleeping problems, please talk to your GP about getting some counselling.
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We may be able to provide access to counselling - please click here for more
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Some other sources of support are shown below.
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Post-Traumatic Stress Disorder
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Sexual Relationships
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POEMS can bring on problems in any relationship, and sexual relationships are not excluded. Dealing with a long-term illness or disability can put a great strain on a relationship, particularly when one partner is partially or totally dependent on the other. As well as coming to terms with a physical disability, the emotional upheaval can interfere with a couple’s sex life and this can be difficult to talk about. This can mean that the once close, intimate relationship can become distant and stressful for both partners. Help is available so speak to your GP or a relationship counsellor.
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Relate https://www.relate.org.uk/
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Getting Back To Work
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When someone is ready to return to work after an absence, the employer should have a procedure they follow, or an Occupational Health service. You can check your workplace’s absence policy for this. Your workplace might have a policy for meeting with employees after absences.
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Back To Work: After a Long Absence
If there’s been a long absence or the employee has an ongoing health condition, it’s a good idea for the employer and employee to meet and:
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Make sure the employee is ready to return to work.
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Talk about any work updates that happened while they were off.
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Look at any recommendations from the employee’s doctor.
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See if they need any support.
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If the employee has a disability, see if changes are needed in the workplace to remove or reduce any disadvantages (‘reasonable adjustments’).
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Consider a referral to a medical service such as occupational health.
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Discuss an employee assistance programme (EAP) if it’s available.
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Agree on a plan that suits you both, for example a phased return to work.
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Back To Work: Making Reasonable Adjustments
If an employee has a disability, by law their employer must consider making ‘reasonable adjustments’ if needed to help them return to work.
Reasonable adjustments could include making changes to the employee’s:
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Workstation or working equipment.
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Working hours.
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Duties or tasks.
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For the best course of action, the employer should take advice from:
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- The employee themself.
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The employee’s doctor.
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Their Occupational Health adviser.
This can help get people back to work quicker prevent any further problems.
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Back To Work: Phased Return
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A ‘phased return to work’ is when someone who’s been absent might need to come back to work on:
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Reduced hours.
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Lighter duties.
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Different duties.
For example, after a:
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Long-term illness.
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Serious injury.
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Bereavement.
The employer or their HR manager and the employee should agree on a plan for how long this will be for.
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For example, they could agree to review how things are going after a month and then decide to increase the working hours or duties, or they might decide they need to stay reduced for longer.
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The employer or HR manager should continue to regularly review the employee’s health and wellbeing in the workplace and make new adjustments if necessary.
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Back To Work: Pay During A Phased Return To Work
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If the employee returns to their normal duties but on reduced hours, they should get their normal rate of pay for those hours they work.
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For the time they’re not able to work, they should get sick pay if they’re entitled to it.
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If the employee is doing lighter duties, it’s up to the employer and employee to agree on a rate of pay. It’s a good idea to make sure this agreement is put in writing.
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This information is provided by ACAS (the Advisory, Conciliation and Arbitration Service).
Further information regarding absence and returning to work is available on the ACAS website:
POEMS - what happens next?
What happens next? That’s a big question for a lot of people after diagnosis and/or leaving hospital. This section covers everything from rehab to hygiene to pain management.
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As referenced above, once initial treatment is complete, you will still have regular check-ups with your consultant to monitor for signs of relapse or return. Along with that, we can share some additional post diagnosis/treatment advice.
Support and Rehabilitation
Financial Help
General Prognosis
Pregnancy
Physiotherapy
Hygiene, Cleanliness and Teeth ​
Diet
Exercise and Rest
Pain
Support and Rehabilitation
If you do need time in hospital, you may require some form of rehabilitation before returning home, to help you regain strength, dexterity and mobility. This could be within a rehabilitation unit in the hospital, or you may be transferred to a specialist rehab unit elsewhere.
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You may also be offered psychological support, as a potentially life-changing illness such as POEMS or another chronic inflammatory neuropathy can also severely impact your mental wellbeing.
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Specialists who might support you through rehab:
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Physiotherapist: will help you with movement issues, re-building muscle, and learning to walk
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Occupational Therapist (OT): will identify potential problem areas and work out some solutions
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Speech and Language Therapist: If you're experiencing or have experienced any communication and swallowing problems (possibly due to the impact of treatments like Chemotherapy), the therapist can help you with that.
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Counsellor or Psychologist: someone you can discuss your problems with and help you find ways to cope emotionally
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Financial Help
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Financial concerns may be causing anxiety, especially if you are the main wage-earner and unable to work. If you are employed, stay in regular contact with employers and make sure you understand the absence and returning to work processes.
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Inflammatory Neuropathies UK may be able to help with the cost of frequent journeys to visit a family member in hospital. Get in touch and ask about our Personal Grants Scheme.
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Once you leave hospital, or if you are already receiving treatment as an outpatient, you could be entitled to benefits to help you support yourself and your family. The benefits system is complex and subject to change, but Citizens Advice has up-to-date information on their website, and they can even help you make an application for benefits such as Personal Independence Payment (PIP) or Universal Credit:
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Further information on benefits can be found at:
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If adaptations to your home are needed, such as installing a ramp or downstairs bathroom for example, it is worth contacting your local council to see if you are entitled to help via a Disabled Facilities Grant:
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If you are on a low income, or someone in your household is severely and permanently disabled, you may be entitled to a reduction in Council Tax. Further information is available an Carers UK.
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General Prognosis ​
With treatment, ​the outlook for patients with POEMS syndrome has improved greatly in
the last few years.
In a study of 100 POEMS patients in the UK, the 10-year survival was 82% - or 82 in 100 patients)
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Pregnancy ​
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With a wide range of treatment types, please talk to your consultant about trying to get pregnant. You need to allow Chemotherapy to completely exit your system, how long that takes can depend on the drug, dose, and person. It's important to talk to a doctor before trying to have a baby during, or soon after, treatment.
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Physiotherapy
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If you have difficulty accessing physiotherapy, but feel it would benefit you, or if you find yourself on a lengthy waiting list, please contact the office at Inflammatory Neuropathies UK.
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Hygiene, Cleanliness and Teeth
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Personal cleanliness for those who cannot care for themselves fully can be a problem. Many returning home from hospital may have reduced use of their hands, usually temporarily, but sometimes permanently. Many will be unable to wash themselves, brush their hair, use the lavatory, wipe their bottoms, brush their teeth, cut their nails etc. It is important for both hygiene and self-esteem that these matters are attended to by a carer.
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Through no fault of their own, many people’s teeth are neglected during periods of serious illness. Once you have returned home, arrange an appointment with your dentist as soon as possible. If you have difficulty attending a dental practice, enquire about community dental services. Using an electric toothbrush can be helpful if you have residual weakness in your hands. More advice can be found on the British Society for Disability and Oral Health website.
Diet
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During illness, nutritional needs are at their peak, but it is not unusual for patients to lose their appetites or taste for food. Worry and fear often accompany illness and can also contribute to loss of appetite. Good nutrition can be a powerful ally in the process of recovery, so if you need advice, ask to speak to a nutritionist. If taste has been affected, this will usually improve with time. Plastic utensils can be used if bitter or metallic tastes are experienced whilst eating.
Sometimes taste changes can be related to medications, but drugs should not be discontinued without first consulting your GP. Try to eat a healthy, balanced diet and keep consumption of sugary and processed foods, and drinks that are high in caffeine or alcohol to a minimum. There is some excellent advice on nutrition on the NHS website:
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Exercise and Rest
Physiotherapy, occupational therapy (OT) and speech and language therapy play a vital role in maximizing functional ability.
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Exercise can help to improve your muscle strength and reduce your overall sense of fatigue. It can also aid sleep and support mood through the production of endorphins. Other benefits include helping your heart and lungs remain healthy and making you feel more positive about yourself. However, it may take weeks or even months before you feel some of the benefits, so it is important to pace yourself. You will find lots of exercises online, including seated exercises, or you could ask your GP or physiotherapist about how to start regular exercise and what exercises might be right for you.
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Visit the NHS website for advice on exercise: https://www.nhs.uk/live-well/exercise/
and also for advice on sleep: https://www.nhs.uk/live-well/sleep-and-tiredness/
Pain
​​Being in pain naturally impacts on mood and the ability to cope with everyday situations. If you are experiencing pain, it is important to talk to your family and friends about this, so that they understand what you are going through and why you might be irritable and difficult to live with at times.
Other Sources of Support:
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Pain Concern https://painconcern.org.uk/
British Pain Society https://www.britishpainsociety.org/
Pain Association Scotland https://painassociation.co.uk/
Welsh Pain Society https://www.welshpainsociety.org.uk/
Pain Relief Foundation https://painrelieffoundation.org.uk/
Pain Relief Ireland https://painreliefireland.ie/