Hi
Posting on behalf of my wife who has had ME for 15 years, last 12 years severely affected. She has always been housebound with intermittent periods of being bedbound, and recently (4 months ago) had a 'crash' which has seemingly left her at a much reduced level. She was in bed all the time for the first 6-8 weeks, and now she can walk only small distances (a few yards a day) and has to spend most of the time in bed or sitting down on the settee . All her usual symptoms are now a lot worse.
She has been trying to build her strength up again by doing very small activities and increasing them over time but she hits a wall - basically if she overdoes it she gets a symptom that she has never had before: severe burning pain in her arms, up the sides of her trunk, in her chest, legs and abdomen. It can take many hours for the pain to go away once it comes on, and the severity seems to be related to the level of activity. Does anyone know what this might be? Is it lymph-related maybe? Are there any treatments for it? Desperate for help on this.
Many thanks
John
Posting on behalf of my wife who has had ME for 15 years, last 12 years severely affected. She has always been housebound with intermittent periods of being bedbound, and recently (4 months ago) had a 'crash' which has seemingly left her at a much reduced level. She was in bed all the time for the first 6-8 weeks, and now she can walk only small distances (a few yards a day) and has to spend most of the time in bed or sitting down on the settee . All her usual symptoms are now a lot worse.
She has been trying to build her strength up again by doing very small activities and increasing them over time but she hits a wall - basically if she overdoes it she gets a symptom that she has never had before: severe burning pain in her arms, up the sides of her trunk, in her chest, legs and abdomen. It can take many hours for the pain to go away once it comes on, and the severity seems to be related to the level of activity. Does anyone know what this might be? Is it lymph-related maybe? Are there any treatments for it? Desperate for help on this.
Many thanks
John