I've been diagnosed with polymorphic light eruption ( ple) lupus ( sle) and chronic fatigue/pain syndrome ( cfs ) I'm 35 years old...over the last 5 years I've noticed a considerable loss in energy and increase in aches especially at night time where my arms and legs are so painful it reduces me to tears. I take hydroxychloroquine , prolonged release Tramadol, amitriptyline, ibuprofen, and paracetamol... I find it so frustrating, simply walking around the shops I end up limping or having to sit down...my legs sometimes buckle underneath me on the other hand when I'm having a good day I play ball games with my children and I'm fit as a fiddle...until a day later or that night when my body tells me I've over done things...my specialists tell me to take the tablets although they make me woozy and light headed as it is the lesser of the two evils. I regularly feel faint and have had to cut down my work load massively. I've bought a blood pressure monitor and it shows very high at night and very low in the morning which is in keeping with the pain and faint feeling. I'm so frightened I will have to use a wheel chair soon...does anyone know of any ways to help with the night time pain... I have started to get up and watch TV in an attempt to distract myself I also use a massage/ vibration pad and hot water bottles to numb the pain but I'm so exhausted through not sleeping for so long....all ideas welcome X
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