Remissions

[paulw318]

I have had ME/CFS for nearly eight years. In the first couple of years I had various tests and saw about 4 different neurologists because I have gait problems (which has been described as spastic), involuntary movements, problems with memory, brainfog etc. All of which are made worse by exertion. I was diagnosed as having ME/CFS.

Every year I have short remissions which last from a week to as long as a month. I have recently had one that lasted 4 and a half weeks. During these periods there is almost a complete cessation of symptoms, my gait becomes normal, the brainfog lifts, the involuntary movements go and I can function at about 80% of what I would consider normal for someone of my age and build.

During my last remission I was able to go from taking only between 1500-1700 steps a day to being able to manage 12,000 to 14,000 steps a day with no adverse effects. I use a pedometer to try and help pace myself. Before the remission I had often tried to push myself to 2,000 steps a day but it always resulted in a crash.

It is often assumed that mobility and other problems in ME/CFS are caused by deconditioning. If this is so how is it when I have a remission I can walk normally and do normal things with only the mild aches one would expect from using muscles that haven't been used for a while? There has been no gradual build up - I've gone from being ill to near normality.

Now I have relapsed I can no longer do more than 1500-1700 steps a day without paying for it. In fact I'm struggling to adapt again to being able to do so much less. Now when I walk the muscles in my legs stiffen and my gait is bad. No matter how hard I try I cannot walk normally and have lost all of my strength again.

I know remissions were often mentioned in the early descriptions of M.E. but as far as I'm aware they are not mentioned in descriptions of CFS apart from saying it is a condition that's variable. I have only met a few people who have ME/CFS who have had remissions like these. These are not the type of boom and bust periods usually talked about today, which are usually more like push and crash rather than boom and bust, these periods are almost a complete restoration to normal health. Any mild symptoms present are almost certainly due to deconditoning.

Has any research been done into remissions in ME/CFS? Does anyone have an explanation of how they come about? All I know is they are very confusing. I'm grateful for all I'm able to do when having one, but the following relapse is always hard to deal with. To have the prospect of increasing good health suddenly ripped from underneath me is hard to deal with. I always try not to get my hopes up too much during remissions as I've relapsed before. But it's hard not to start to get excited by the possibility of being restored to a normal healthy life.

[Dr Charles Shepherd]

Paul

ME/CFS is what is termed a fluctuating medical condition - meaning that symptoms and disability levels often fluctuate on an hour to hour, day to day, week to week and month to month basis

The situation you are describing below, which is more like the way in which some people with MS have what might be termed periods of good remission and then relapse does occur in ME/CFS but seems to be less common

I'm afraid there has been no real research carried out into this very important and interesting aspect of ME/CFS

What we currently know about the relapsing and remitting nature of ME/CFS, along with advice about management, is summarised in an MEA leaflet on the subject

If you hop over to the exercise and activity forum I have just posted a fairly detailed summary that covers the subject of activity management, pacing and deconditioning

MEA website and pdf literature form: http://www.meassociation.org.uk

[paulw318]

Thank you Dr Shepherd, I will have a look at you other post.