Monday, 16 March 2009

My sister and ME

I mentioned before that my sister was ill with ME when we were teenagers in fact she was ill for 4.5 years in total. She was struck down at the age of 15. She is now 30, has a good job, and finished a PhD last year in astrophysics of all things! Basically she made a full recovery and although her brain fog was severe for a couple of years that clearly recovered too!  

My sister had the classic low grade virus followed by a sharp decline. She was barely able to lift a knife and fork (something I can fully relate to now!) was bedridden and in a lot of myalgic pain. She did gradually improve to a point, although not fast enough to satisfy even the most patient person let alone a teenager. It was a frustrating time. She was lucky because her doctor had a good idea of what was wrong from the outset and, back then (and even now, though less so), there weren't many doctors that took the disease seriously. You have to wonder how many lives have been lost and how much suffering has been caused because of this...  

Anyway she said that she believed that what really changed things was when she spoke to an ME specialist who explained to her how important pacing was. It took her roughly 2 years from this point to recover. She had been resting to some degree before this of course (there is a certain amount that is naturally imposed by incapacitation!) but not efficiently or effectively. It was easy to think it was resting when really it was not because the normal rules just didn't apply any more. I remember her sitting making art using a stapler and a piece of paper at one point because really she just wanted to be doing something, anything, to take her mind off it. I understand this because even now, knowing what I know, I find myself wanting to surf the internet or listen to a talking book rather than do nothing, absolutely nothing.  But, when I did this I was slipping downhill, not climbing up and out. According to my sister having daily rest periods doing nothing is what it takes, so I am determined to exercise my self discipline and really rest properly and, when I'm not resting, make sure that I do LESS than I think I can do. By working well within the body's limitations in this way the body can then use the extra time and energy to work on healing itself.

My sister also cites the story of a friend of hers who got ME fairly recently. Apparently this friend followed the same approach but took it one step further. She is the Queen of carefully scheduled resting I am told! She would rest at set points during the day for set periods of time every day. She is now back at work (full-time) in only about a year from when she first started doing this - making the total severe illness time only 2 years I believe! I am going to get in touch with her soon, hopefully, to see if she has any further tips on getting well.

The other story my sister cites is of the mother of one of her friends who has chronic fatigue syndrome. Every time my sister saw her she would have the ashen cast to her skin and the fatigue was clearly evident but she would still be trying to dust the surfaces, or read a book, or do little things constantly. When my sister approached her about resting her response was 'oh it's only a little dusting'. It seemed that she was unable to change her approach towards what constituted resting or activity. It seems that as soon as she had any energy at all she would use it. Over the same two year period where the other friend recovered, sadly this lady's condition did not ameliorate. Perhaps there are further particulars that I don't know about in this case but thinking about it does encourage myself to rest properly when I don't feel like it!

Aside from resting
From the point of view of medications I believe both my sister and her friend took amytriptolene to help with the nerve pain and sleep problems. I may request this from my new doctor and see if it helps. My sister also went to an accupuncturist to help with the pain so my mum has been taking me there of late and it definitely seems to help with the myalgia.  

Something else I discovered some time back (because of my chronic digestive problems actually) was that taking L-glutamine powder really helped me recover from exercise. I decided to try this out on the fatigue and am finding it extremely helpful. I take 2 grams in water on an empty stomach right before breakfast, lunch and dinner. I believe it is thanks to this that I am able to walk from one end of the house again as I had crashed down to the point of needing support to leave my bed to make it to the loo and having to use a straw to drink (even from a plastic cup). As I have improved the frequent muscle pains have also subsided to an occasional thing. The glutamine didn't help with this immediately though, so it may just be a side effect of general improvement. What the glutamine really makes a difference for me on is muscle strength recovery.

I have also discovered through my own recent experiences that if you do end up inadvertently overexerting yourself if you rest immediately and avoid any further exertion, then the post-exertion fatigue is quicker to recover from than if you don't. By this I mean that although the full force of the fatigue is usually delayed, if you stop and do nothing before it fully hits you then you won't worsen as much. I think that an action done when you have already exerted costs you/sets you back far more than the same action if it was done beforehand. I think of this approach as 'damage limitation' and so I also immediately take a dose of glutamine at this time.

Both my sister and her friend are great examples of people recovering from ME and hopefully will provide some encouragement, but I feel I should mention that I think where there are co-infections and concurrent health issues it can be a lot harder to achieve a full recovery so quickly. In fact I think it is really important to tackle all problems at the same time. I for example I have extreme food intollerances (particularly to gluten), multiple chemical sensitivities, dustmite allergy, concurrent chronic yeast infections and chronic sinusitis. I will talk more about these things at a later point but I do believe that good nutrition and supplementation and listening to your body are vital. I believe I would have crashed far earlier without them. Perhaps this seems a little confusing because I described my recent deterioration as being acute but I have actually been carefully managing my health problems for a long time now in an attempt to have a semblance of a normal life. But then, it seems, the illness won. I will explain my disease progression in a new post soon.


  1. Wow, what an interesting and informative post! It's always fascinating to hear from or about people who have actually recovered from ME/CFS. I think you're absolutely right about the rest. I have a lot of trouble doing LESS than I feel able to do - I tend to ramp up my activity level when Im feeling well. I also agree with what you said about co-infections - you have to treat the underlying root causes.

    As for sleep, there are lots of medications in the same category as amitriptyline that can help, if that one doesn't work for you. My son and I both take nortriptyline (available in a liquid so you can take exactly the right dose) and I take trazodone, too. The combination has completely restored my sleep to feel like normal again. It can take a lot of trial and error to find the right med and the right dose. E-mail me if you want more info - there are two excellent articles on that subject.

    Thanks for sharing your sister's experiences.


  2. Thanks for your feedback and suggestions Sue! Must say I agree with you, it is so hard to do less than one feels one can do. I am feeling better than I was so I instinctively want to start doing things for myself that I shouldn't. I hope it will get easier with time as I get used to the process.

    It's good to know that there are some choices out there for medications. Sleep is so important with this sort of thing. I will definitely get in touch if I need to find out more, thank you. I seem to be sleeping decently again for the moment fortunately - initially my sleep had been offset by about 3 or 4 hours.

    Good luck getting rid of the lyme!