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Last change: October 29, 1998.

Results of the 1997 survey

Backgrounds

During november 1996 to march 1998 I collected your replies to the online CFS/ CFIDS/ ME/ Fibromyalgia Sleep and Dreaming Survey. I'll refer to this survey as the 1997 survey for short.

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

Disclaimer

This survey has very limited scientific pretensions. This kind of research on the internet promotes self-selection of the respondents. This means that the respondents are not representative for the general population of patients.

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.
Although no conclusions can be drawn about the general population of patients, this survey generated a few interesting results worth further investigation.
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Respondents

In Table 1 - Respondents grouped by illness (just below) you see the number of respondents per illness group. The six respondents of the miscellaneous group reported: myofacial pain syndrome, psoratic artheitis, asthma, lupus, scoliosis with extensive spinal fusions and chronic ulcerated colin. Depression was the only non-CFS disease named more than once, so I grouped it separately. To my surprise I also received a lot of response from otherwise healthy people complaining about sleep problems and nightmares.

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.

Respondents grouped by illness
(table 1)
Chronic Fatigue Syndrome 17
Fibromyalgya 62
Depression 3
Miscellaneous diseases 6
Sleep or dreaming problems 19
Total 107

Sleeping problems

Some interesting points:
  • 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.

CFS and fibromyalgia patients generally need far longer recovery times from physical, emotional or intellectual activities. Unrefreshing sleep could just be a result of this same long recovery time. However, as so many also reported to get too little sleep, sleep itself may be a factor. From the answers received it was impossible to get a good understanding why patients should not get enough sleep. Perhaps many still have to get up at a fixed time which would make not being able to sleep already enough reason. There is also the large group that reported waking up with no apparent reason.

Sleep problems CFS and fibromyalgia
(table 2)
Unable to get to sleep 44
Waking up without apparent reason 45
External interruption 35
Light sleep 29
Other problems 22

Medication use

Some interesting points:
  • 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.
In short, if medication interferes with dreaming then medication is a serious complicating factor to reach conclusions about dreaming with CFS and fibromyalgia patients.

Dreams

Some interesting points:
  • 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.

Dreaming complaints fibromyalgia
(table 3a)
Vivid dreams 18
Nightmares 3
Vivid dreams and nightmares 21
No vivid dreams or nightmares 20

Dreaming complaints CFS
(table 3b)
Vivid dreams 3
Nightmares 4
Vivid dreams and nightmares 8
No vivid dreams or nightmares 2

Dream samples

There is a complete page at Healing Dreams showing a few of my personal dreams related to CFS. In the preface to the survey I mentioned that my own dreams showed a lot of violence. I hoped the survey would give more specific samples that would show that violence dreams have a specific nature with CFS and fibromyalgia. For now I have to conclude that this is not the case.

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.

Violence, anxiety and chasing

Originally I assumed that the violence theme would be typical for the early stages of a disease. That idea came mostly from my own experiences at the time. I now believe that with chronic disease the violence theme is not limited to only the initial stage of the disease. The survey seems to confirm this. The number of respondents commenting on the violence theme is so large that I doubt all of them were just in the first few months or even the first year of the disease.

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...
Some respondents commented not to remember their dreams, but waking up with a lot of anxiety.

Disease monitoring and diagnosing dreams

At Healing Dreams I suggest that dreams can monitor how the disease progresses and that dreams can even diagnose health problems long before you would normally become aware of them. I had hoped respondents would confirm this and some actually did. More quotes, each one from a different respondent:
.. 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...

Curing dreams

The magical kind of healing dreams: dreams that cure. One respondent gave an example of what may perhaps have been such a dream:
...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...

Conclusions and follow-up

  • 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.

Give your feedback

If you think this article is a bit unclear at points or you have suggestions for improvements, please email the author Harry Bosma. Due to CFS and RSI (repeated strain injury) it may take a few days before he replies.

For further discussion with other dreamers and patients, please feel welcome to join the Health and Dreaming Forum.


Harry Bosma is looking forward to comments, email him at hbosma@xs4all.nl. For dream interpretations please visit the Mythwell.com site for the Alchera dreaming software.

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