Chronic Fatigue Syndrome/Could my friend have CFS?

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Question
Hello Suzan,

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.
Tinnitus
Deafness
Shocks in head and heart
Stroke like symptoms (eg. difficulty with speech)
Sinking feelings
Sensitivity to noise
Visual problems
Inability to sleep
Nausea

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.

Manni

Answer
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:

http://livewithcfs.blogspot.com/2014/06/why-everyone-with-mecfs-or-fm-should-be.

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 -

Sue Jackson

www.livewithcfs.blogspot.com

Chronic Fatigue Syndrome

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Suzan Jackson

Expertise

I have had CFS since March 2002. My 14-year old son and 10-year old son also has CFS. I have a scientific background (chemical engineering) and have read and researched extensively to try to help myself and my sons to improve our symptoms, with some success. I`ve also conferred with some of the top CFS doctors in the U.S. I have a lot of hard-won experience working with school systems to get appropriate support for my sons. This is a very debilitating and isolating illness, and I would be glad to help anyone else who is struggling with CFS themselves or with a family member. You can read about our experiences in learning to live with CFS at my blog: www.livewithcfs.blogspot.com.

Experience

Have had CFS/CFIDS since 2002.
Two young sons have CFS/CFIDS.

Organizations
CFIDS Association of America
Various listserves that provide up-to-date information on CFS research.

Publications
www.livewithcfs.blogspot.com

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