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Chronic Pain and Sleep Disorders
#1
May is Ehlers Danlos Syndrome (EDS) Awareness month and I came across this post on Facebook. Some of the information is appropriate for anyone with chronic pain and/or fibromyalgia and of course EDS.

[EDS is a genetic disorder where the collagen in the cells is hyperelastic. The types are determined based on which cells are the most affected. For example, in the Vascular Type it is the veins and organs that are the most involved. Most persons with this type die of aortic rupture and few reach their 50s. I have they Hypermobility Type and it is my joints that are the most involved.]

Quote:#‎EDSAwareness‬ Sleep disturbances are common in EDS. According to Alan Pocinki, "The most common type of sleep disorder seen in the hypermobility syndromes appears to be characterized by excessive heart rate variability at night." There are other problems, too. Apnea occurs for two reasons—one type is obstructive, which people with EDS are particularly prone to, as the connective tissue mutation means our tissue is "floppier" than usual, leading to more easily caused obstruction when the tissue doesn't hold its shape well. Central apnea also happens in some with EDS, possibly because of those interface issues surrounding the area where the skull meets the spine which affect cerebrospinal fluid flow, the cerebellum, and autonomic function. There's a little information on fibromylagia and sleep included, because there's some thought that at least some FM is undiagnosed hypermobility EDS, and almost any of us with hypermobility EDS either do or could carry a FM diagnosis.

From Dr. Alan G. Pocinki's "Non-Restorative Sleep in EDS: A Manifestation of Autonomic Dysfunction":

"Non-restorative sleep in EDS: frequent arousals and awakenings, little or no deep sleep.

"Don’t overlook the basics:
• Good sleep hygiene
• Comfortable mattress
• Dark and quiet
• Elevate head of bed (if lightheaded during the day)
• Treat sleep apnea, limb movements only if significant

"Complex medication “regimen” is often required:
• Multiple medications with complementary effects, e.g. one medication for pain, one to reduce arousals, one to increase deep sleep
• Finding the right combination can be a frustrating trial and error process
• Home sleep monitor may be helpful

"The most common type of sleep disorder seen in the hypermobility syndromes appears to be characterized by excessive heart rate variability at night. Medications to suppress, offset, or block this excess activity are effective in improving sleep, measured both by polysomnography and symptoms. Improving sleep and minimizing daytime stresses helps to replenish autonomic reserves, which in turn improves daytime autonomic balance and also helps improve sleep, which in turn improves daytime function, which in turn improves circadian rhythms and sleep, which is how you get better."

Dr. Alan G. Pocinki's "Non-Restorative Sleep in EDS: A Manifestation of Autonomic Dysfunction" and "Pseudo-Psychiatric Symptoms in Ehlers-Danlos Syndrome", at 2013 annual conference; "Hypermobility Handout" and "Sleep DIsorders in EDS" 2012 annual conference; Breaking the Cycle of Chronic Pain/Poor Sleep/Depression/Fatigue, his general session from EDNF's 2014 Learning Conference, https://youtu.be/9TxKDVkaDFM

Susan Cordes, MS CGC, "Sleep, Pain and Fatigue in EDS" Presented at 2012 Annual Conference
http://ednf.org/sites/default/files/Cord..._sleep.pdf
http://ednf.org/sites/default/files/Cord...notesS.pdf

Evaluation for sleep apnea in patients with Ehlers-Danlos syndrome and Marfan: a questionnaire study.
http://www.ncbi.nlm.nih.gov/pubmed/11903337

Study of Sleep Disturbance in Ehlers-Danlos
http://jointpainrelief.com.au/study-of-s...rs-danlos/

Patients With Fibromyalgia 11 Times More Likely to Have Restless Legs Syndrome
http://www.medscape.com/viewarticle/730935

Objective Measures of Disordered Sleep in Fibromyalgia
http://www.ednf.org/images/stories/pdfs_..._sleep.pdf

Sleep-Disordered Breathing: Autonomic Mechanisms and Arrhythmias
http://www.ednf.org/images/stories/pdfs_..._sleep.pdf

Sleep continuity and architecture: Associations with pain-inhibitory processes in patients with temporomandibular joint disorder
http://www.ednf.org/images/stories/pdfs_...ejpain.pdf
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#2
They are starting to link OSA with Ehlers Danlos. I have had chronic pain (low back) for a couple of years and last year found I have an ascending aorta dilatation (it will be called an aneursym when it gets to 1.5 normal size) and mitral valves are starting to prolapse, and then came the sleep apnoea .This year I finally got in to see the clincial geneticist but have to wait 3 months for the results of the aortopathy panel to see if there is a connective tissue disorder. 

As an ex-nurse and psychologist who studied neuropsych I still access many journals to keep myself informed (GPs would have to read 19 journals a day to keep up, something I learned as a patient safety officer). Interestingly I found that the link between OSA with Ehlers Danlos is being made.

There are many many articles ...just do a search if you are interested (I can't post links as yet)

Initially I had AHI of 71-81 and was starting to get this under control but now I am having Central Apnoeas as well (last night 27.4/hr). I am on Jurnista which is a slow release long acting morphine and this is topped up with Endone (quick acting) when I have breakthrough pain. It took a long time to find a drug that managed my pain so I am more than a bit nervous about what the Sleep Specialist I have to see in a few weeks will want to do.

My biggest concern has been the impact of intermittent hypoxaemia before CPAP, but I will save that for another post Smile

cheers
Sue
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#3
Getting pain reduced has helped a lot. I should have looked for help sooner and not been so hard headed.
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Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
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#4
Paula, that would, IMHO, make the basis for a great WIKI article, "Sleep Related disorders" or something like that.
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#5
I would agree it would be a good topic.

Injury pain has added to my sleep problems. The doctors have been able to fix some of the problems others not so much. You can only take so much of the drugs before life gets not living. Adding cpap has helped loads.

Sleep-well
For more information explore and read the wiki or just start with the link below.
http://www.apneaboard.com/wiki/index.php...re_success

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
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#6
CPAP helps with sleep. Getting good sleep helps the body to get the rest it needs. It also helps with getting oxygen back to the lungs and body which aids in healing.

A good idea would be to sit down with either your GP or your pharmacist and go through all your medications with the idea of "which ones of these interfere with sleep" and "when should I be taking them". Sleep is sometimes one of those "adverse reactions" that gets ignored. If you let your pharmacist know, they can mark it on your chart and anything that comes up as having sleep issues, they will be alerted. At least it happens at my pharmacy and they are not a Box Store.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#7
Paula you are so right.

I have started a new drug and dosing system that seems to have adverse effects on my sleep. I am collecting information to look at and bring to the doctors.

I expect to start a new post looking for ideas when I collect more info.

Thanks 

Sleep-well
For more information explore and read the wiki or just start with the link below.
http://www.apneaboard.com/wiki/index.php...re_success

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
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#8
Any time we start a new medication, those of us who use CPAP, we should always watch our dataz. Sometimes any blips that happen to the AHI are short lived and we just have to wait them out. Unless the change in AHI is very drastic and way over our norms, always try to wait out the change for at least a few days. Could be coincidence.

My GP knows of my history with insomnia and OSA so she always has that in mind with medications. And my pharmacist watches meds from other docs. Sometimes all that is needed is to take it at a different time of day or to break up the dosage.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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