Results of the 1997 survey

The survey was meant to explore sleep and dreaming issues with CFS and fibromyalgia patients. A combination of closed and open questions was used.

With this survey self-selection of respondents could occur at two moments:

1. The survey was on a website about dreaming. So it is likely that especially patients interested in dreaming would visit.
2. Respondents could evaluate the survey before deciding to participate. If a potential respondent felt that most of the questions didn't apply to her situation, she may have been more likely to decide not to participate.

The relative high number of fibromyalgia patients is remarkable. I don't believe the ratio CFS to fibromyalgia as found in the survey is representative for the general population, so I suspect that fibromyalgia patients are more online than CFS patients or somehow succeeded in finding Healing Dreams more often.

Almost all respondents took their time to answer the open questions and volunteered a lot of information. This was very helpful in getting a better picture of dream and sleep issues important with these groups of patients.

• As could have been expected all CFS and fibromyalgia respondents reported sleeping problems. Most of them (45) reported that they found sleep "not refreshing at all". Three respondents skipped this question, one found sleep "refreshing" and the remaining 30 found sleep "slightly refreshing".

• Contrary to what I had expected, of the CFS and fibromyalgia respondents few reported too much sleep as a problem (15), most reported too little sleep as a problem (58).

• Pain and the "hormone rush" (the body still thinking it is running for its life even when you're exhausted and haven't really done anything for the last few hours) were the two most common explanations for not being able to sleep.

• A variety of reasons were given for waking up. Pain was a very common complaint with fybromyalgia. Also mentioned were other diseases like asthma or certain allergies, a family member also being ill needing attention. Far less frequent reasons and not necessarily unique for these patients include bladder problems, partners standing up for work in the middle of the night and snoring partners.

• For more figures please see table 2. Table 2 presents the scores for specific sleep problems. Most respondents reported combinations of complaints.

• Fybromyalgia patients must be experts on medication. Of the 63 respondents only 12 did currently not use medication. A few of these 12 made clear to have tried everything available without result, some others stated not wanting to make problems worse with drugs and therefore restricted themselves to herbs, vitamins, minerals, food supplements or homeopathic treatments.

• From the 17 CFS patients 8 reported not using any medication. From these eight several reported to follow self-imposed diets avoiding for example caffeine, sugar or red meat. One of the eight reported using homeopathic medication.

• Quite a few fybromyalgia patients use a combination of drugs to fight pain or anxiety, get to sleep, fight infections, treat complications like nose-dripping or fight additional health problems like asthma. Some reported to also use anti-depressants to get some energy or to avoid depressions.

• Contrary to what I had expected vivid dreams are not a sign of good sleep at all. On the contrary many respondents reported both sleep problems and vivid dreams. Some actually explained that they see vivid dreams as a cause for sleeping badly as it bothers them so much.

• Two respondents had the impression that the vividness of dreams was related to relapses: the worse the disease the more vivid the dreams.

• Especially fybromyalgia patients reported to have dreams that seem not so much visual as well as sheer anxiety. This possibly reflects the physical state of the body, because respondents also complained about feeling anxiety in general, pain and feeling physically active even while resting.

• Three respondents reported they used to dream a lot before the disease, but say to have lost that ability since the onset of the disease. I had expected to see this reported a little more, as my theory is that dreaming itself requires a lot of energy.

I also wondered if there would be other recurring themes than just he violence theme. But violence simply seems to be the most important themes. Other but far less reported themes reflect situational concerns, like acceptance of the condition by family and friends.

In the preface to the survey I also mentioned that my own dreams helped me to accept the disease and not to deny it. None of the respondents confirmed this theme.

Quotes from different respondents:

...it seems that most of the time they are about loveds ones getting hurt or killed...

...My daughter dreams about being killed or having to fight not to be killed. Both of us tend to wake up in a panic.

... If I were a writer, I could make Steven King cry!...

...If you think about it all my dreams have a recurring theme of saving myself which involves a lot of aggression, running, violence, getting help, defending myself and overcoming obstacles...

I often dream about people dying, and in my dreams everyone else is nonchalant about it, yet I am terribly upset and wake up this way...

...Some recurring for years ie, man in black hunting me down no matter where we move, he finds me...I end up killing him before he can kill me...

...It happens every night, all night long except early morning, and has been going on for quite sometime. There are recurrent dream themes that include serious violent attacks against an image i can't quite make out...

...I have dreamed about being stabbed with a knife more than once...

I dream that I am violent to others or myself.

...The nightmares have always been there too, its a certain entity, and we have always been at war, both phyically and psychologicly, and these I can never wake out of , (except for lately) whan I want to...

... People I didn't know were getting killed and stabbed, ect...

.. When my allergies and fever and fatigue are the worse, it seems that my dreams are the most vivid and frightening...

...it sounds crazy but sometimes is Im wounded in it, I wake with a phantom pain, or a slight mark in that place which eventuallly fades, or a real pain that lasts...

...I once had a dream that a horse had stepped on my shoulder and that it hurt so very bad. Then, I was rushed to a fancy hospital and some specialist found out what was wrong with me and cured me...

...For example, I dreamed I started to get in my car, but it was full of water. Then I noticed that the water didn't run out when I opened the door. This meant that I was suffering from fluid retention...

...Recently though, someone has come into a dream, and healed my most oldest and painful wound which I got in a nightmare, and ever since it has not hurt...

• The sleep problem was more serious than I had expected. It may perhaps be interesting to convince a sleep researcher to do a survey under a more representative group of patients.

• I'm puzzled about the many complaints about vivid dreams. It is so unexpected for a disease that robs you of all your energy. Originally I thought there may be some interference from medication, but that doesn't seem to be the case. Respondents not on medication also complained about vivid dreams. Also, the enormous diversity of medication used make it unlikely as well, unless all medication leads to vivid dreaming.

• I've written an article on nightmares and vivid dreams, to answers certain question and issues brought up by all respondents, including the healthy respondents complaning about nightmares and vivid dreams.

• As a follow-up I want to facilitate a dream group of CFS and fibromyalgia patients to explore the potential of dreams to ease the rough edges of the disease (including coping with vivid dreams), to get a better understanding of the disease process and perhaps even discover ways to use dreams in curing processes.