My unresolved sleep problems when living with fibromyalgia

                                sleep problems when living with fibromyalgia

This article is about my sleep issues, when living with fibromyalgia. 
If my thoughts seem unorganised it is most probably due to lack of sleep! (this is not a joke.)

I think that most people would know that pain and sleep affect each other: pain can be made worse by lack of sleep and also our sleep can be affected by having pain. Studies have been done on this. (See 1 and 2 below).

People have been tortured (for real) by not letting them sleep!

Apparently over 90% of people with fibromyalgia report having non- restorative sleep i.e. waking unrefreshed after a night's sleep. It is now included amongst the diagnostic criteria as "waking unrefreshed".
"In fibromyalgia, all treatments are geared toward helping people sleep better. If we can improve their sleep, patients will get better." Steven Berney, MD, chief of rheumatology at Temple University Health System in Philadelphia via WebMD.
I think my sleep problems started after I gave birth to twins. I had difficulty getting them in a routine with each other so that they both awoke for feeds at the same time. Which meant I was woken up more often at night than a mother with 1 child. Hey, I even went to a residential place, run by nurses, to help babies and mothers when the twins were 9 months old. I stayed for 5 days but even these wonderful nurses could not get them to sleep or wake at the same time! I struggled on as you do and 4 years later I was a mess of aches and pains and restless legs and fatigue.  I also believe that being a mother of 5 children has taught me to be a light sleeper.

Pregabaline (GABA) which has analgesic and sleep-modulating activities, has been an advance for the management of non-restorative sleep in fibromyalgia, and odium oxybate, a metabolite of dopamine, which increases GABA, has recently been proposed to increase slow-wave sleep and decrease sleep disruption. 

But what about people like me who don't fair well with medications in general?

Researchers, supported by NIAMS*, are investigating ways to improve sleep for people with fibromyalgia whose sleep problems persist despite treatment with medications.

One team has observed that fibromyalgia patients with persistent sleep problems share characteristics with people who have insomnia, such as having erratic sleep and wake schedules and spending too much time in bed. (Yes, I could have told them about this erratic sleep and the love hate relationship I have with my bed.)

This team is testing whether strategies developed to help insomnia patients will also help people with fibromyalgia achieve deep sleep, which eases pain and fatigue.

Preliminary results show that sleep education, which teaches good sleep habits, and cognitive behavioral therapy, which includes sleep education and a regimen to correct poor habits and improper sleep schedules, both reduce insomnia.

Now that my children are all grown I still have problems with sleep. I am even considering sleeping in a separate bed from my husband for my own health. This is a big step both emotionally and economically but I do notice I sleep so much better when I visit my mother. After about 4 days there, sleeping in my own bed by myself, my pain reduces. This is amazing occurence to anyone who suffers from chronic pain. So all the teaching about good sleep habits and providing cognitive behaviour therapy really does not help if you are a light sleeper yourself and sleep with a snorer, who has sleep apnea who constantly wakes and is rolling around the bed and pulling the covers off you!

Now I just have to work out if I can afford a new bed and where I can put it. But I still have the dilemma of the distancing from my husband...

  • Why is it that we need sleep but cannot sleep at night when we have Fibromyalgia and other chronic illnesses?
  • Why do people with Fibromyalgia often feel a bit better late at night and get more energy, making getting to sleep more difficult?
  • Are we better to take medications that "knock us out" and gives us a good night sleep or do these medications have long term bad side effects?
  • What effect does not sleeping with your partner in the same bed, or even the same room, have on you marriage?
Is anyone studying these?

sleep problems when living with fibromyalgia

* National Institute of Arthritis and Musculoskeletal and Skin Diseases

1.  Poor sleep and depression are independently associated with a reduced pain threshold. Results of a population based study. Pain. Chiu YH, Silman AJ, Macfarlane GJ, Ray D, Gupta A, Dickens C, et al. 2005;115:316–321.[PubMed]
2. Relationship between chronic painful physical condition and insomnia. J Psychiatr Res. Ohayon MM. 2005;39:151–159. [PubMed]
3. Pain-related diseases and sleep disorders. Braz J Med Biol Res. 2012 Aug; 45(9): 792–798. M. Roizenblatt, N.S. Rosa Neto, S. Tufik, and S. Roizenblatt [NCBI]


  1. We need to sleep because our souls can not survive prolonged periods away from home.
    Signed, hobo

  2. Oh, and we can't sleep at certain times because the soul is "doing time".
    Signed, hobo

  3. Hi Spiritual Hobo about these interesting insights into sleep. Not sure what you mean by "doing time" though??


Thanks for your input