Chronic Fatigue Syndrome/Could my friend have CFS?
I write regarding my friend Jackie who is very close and dear to me and it has become difficult (especially for her mother) to watch her suffer and I would be really grateful for your thoughts and advice as to the best steps she can take for diagnosis/remedy. The doctors she has been to so far are unable to help her with any formal diagnosis. A scan to her brain has been unrevealing.
She has described the following symptoms:
Burning skin and burning sensations in lungs, chest, eyes, nose and ears.
Shocks in head and heart
Stroke like symptoms (eg. difficulty with speech)
Sensitivity to noise
Inability to sleep
She has noticed these symptoms seem to manifest themselves more when she is out in the sun or near powerlines though these factors may or may not be the main underlying cause.
The symptoms started soon after an operation 5 years ago to her nose which split after she ran in to a glass pane. Her nose dripped for many days after the operation.
As we are at a loose end, any advice and direction would really be appreciated.
Thank you in advance for your kind attention.
Hi, Manni -
I'm so sorry to hear how your friend has been suffering. Sorry for the delay in getting back to you - we just found out my dad has cancer and traveled to see him this past weekend. I am still trying to catch up after our trip.
While it could possibly be ME/CFS, with all of those neurological symptoms, Lyme disease seems a far more likely diagnosis (and sometimes Lyme causes CFS to start, so many people have both).
Lyme disease is becoming far more common in the UK and is often accompanied by other infections also carried by ticks. Several of these infections can cause weird neurological symptoms like those you list. If left untreated for a long time, Lyme and other tick infections can cause permanent neurological damage, so it's important to get evaluated by a Lyme expert as soon as possible - the tests for Lyme miss a lot of cases and are very prone to false negatives so you can;t rely on blood testing alone to diagnose.
Here is a recent blog post I wrote about Lyme and co-infections - it was written for people diagnosed with CFS, but it covers all the basics and included lots of links to more information:
Two of the links I include in the post are how to find a Lyme doctor near you - I think those apply to international locations as well as U.S.
Just FYI, the defining characteristics of CFS usually include signs of immune dysfunction, like recurring sore throats or swollen glands or feeling feverish, as well as an intolerance to exercise or exertion, where even mild exertion causes a "crash" hours or days afterward. Like I said, Lyme is one of the known triggers of CFS, so many people have both at the same time.
The neurological symptoms sound serious, so I would encourage your friend to seek out a Lyme expert as soon as possible to get evaluated for all of the tick-borne infections. The good news is that it's treatable!!
Good luck -