Journal of IiME Volume 2 Issue 2 www.investinme.org Pain Is the patient experiencing sleep difficulties because of pain ? Do they need special aids and equipment ? Are there analgesics that help/ease the pain? Is touch and lifting difficult because of pain ? Multiple chemical sensitivity Does the person feel nauseous, experience headaches, rashes or other symptoms in response to being exposed to certain chemicals, smells, perfumes, toiletries, household cleaning agents ? Have they developed specific food sensitivities/allergies ? Orthostatic intolerance The patient may become greatly distressed moving from lying to sitting, to standing. They may be unable to sit upright. They may experience dizziness, increased feeling of illness, panic even, if made to stand. Unrestorative sleep Does the patient feel more ill and in more pain upon waking ? Do they feel unrefreshed and unrested ?Do they have difficulties going to sleep and staying asleep ? Do they have difficulties waking up ? They may need to sleep during the day ? Sleep may push the person into a worse state of illness and paralysis. Muscle dysfunction Can the patient do something one moment and not the next ? Does the person have difficulty holding implements, difficulties with gripping ? Do they have difficulty holding even a light object ? Do they have difficulty sitting or standing at varying times during the day ? They may require help eating, or vary in degree of help needed. The patient with severe ME might experience muscle pain, nerve pain, skin-crawling sensations, burning, itching, throbbing pain. The person with ME might feel extremely ill al the time, on top of the other symptoms. It may help to identify some of the symptoms in order to aim for relief. The nurse must be aware that perfumes, deodorants, might have a deteriorative effect on the person with ME, which can be extreme and immediate. Household cleaning agents etc require careful consideration. Organic products might be less harmful. The severe ME sufferer may feel utterly ill and/or unable to stand, but may not be able to identify why. It is important for the nurse to know there is a physiological reason for this. The sleep pattern in ME is altered. May be awake during the night and asleep during the day. They may not experience restorative sleep. They may have nightmares. Paralysis is a significant symptom in sleep disorder. The ability to use any muscle may come and go and vary throughout the day and night and is beyond the control of the person with severe ME. They may be physically able to do something one moment and not the next. The patient must never be pushed to do something, just because they can it sometimes. There is a postexertional malaise response to using muscles, that can occur up to hours and days afterwards. Invest in ME (Charity Nr. 1114035) Page 37/74

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