ME awareness week- Pain

This week is ME awareness week. ME (also known as CFS) is generally categorised as fatigue lasting more than three months and not explained by another diagnosis. But it’s so much more than feeling tired, so this week I will be concentrating on a different symptom each day and how they affect me.

Today I'm talking about pain.

Pain is an unusual symptom for me. Because, although I was suffering from muscle fatigue, I didn't have a lot of pain until my other symptoms had started to improve. Also it is the only symptom that doesn't improve with rest.

There is a lot of similarity between ME and fibromyalgia. Some people believe that these are the same illness. Others believe that fibromyalgia is a symptom that some people with ME experience. They are quite often they diagnosed as separate illnesses and treated by different specialists. Which diagnosis you get mostly seems to depend on which symptom you present with. So because I experience fatigue first I was diagnosed with ME. Had I experienced pain from the start it's likely I would have been diagnosed as having fibromyalgia. There does however seem to be a difference in the way people respond to treatment. Some people with fibromyalgia find that exercise helps which of course is the opposite for people with ME. Personally I feel that it's likely both ME and fibromyalgia are not a single illness but are symptoms of a group of autoimmune disorders.

What causes the pain that people with ME experience? 

It's never been fully established. However, many doctors will say that it's just that we have become more sensitive pain. I have never seen any evidence that supports this assertion. In fact, people with chronic pain tend to be able to tolerate a higher level of acute pain because they are so used to functioning while in pain.

The leading theory (with a growing body of evidence) is that people with ME cannot properly metabolise lactic acid. If you've ever had a heavy workout at the gym you have experienced what a buildup of lactic acid feels like. Your muscles feel weak, stiff and painful. This is what I feel like everyday.  I wake up feeling like I've run a marathon, even if I did nothing the day before.

What treatments do help?

I am on slow release tramadol it doesn't stop the pain but does bring it down to a more manageable level. Without that I would be a lot more disabled by my pain. I do do yoga but don't find that this helps with the pain at all (if anything it increases my pain). Things that do help are massage, soaking in Epsom salt bath's, CBD balms (i.e. things that help with inflammation in the muscles) and painkillers. 

The treatment of chronic pain is a controversial subject. There are constant threats to remove access to painkillers as they don't "treat the cause of the pain". However, they are not proposing to replace them with any treatment for the cause of the pain. Mostly you'll be told to do yoga and meditate the pain away. 

For more information on ME see the ME Association website.