Or any ailment that stops you from sleeping?
How does sleep affect it and what medication, if any, do you take?
Hi all. I've been diagnosed with CFS/ME, postviral after getting mono back in February. I was wondering how people on the sleep restriction phase of this course cope in terms of taking rests during the day? I don't generally fall asleep during the day but I don't currently have anywhere to lie down apart from my bed.
I hope I can get a couch soon but in the meantime, I will still have to lie down in my bed at times outside the sleep window. I don't think there's any way around this for the time being. Has anyone else had the same issue and did the program still work for you?
hi and welcome. to this thread as you will see there are folks on here with cfs . pvfs . me as well as fibro.
it is hard as lots of these illnesses do cause sleepiness during the day. I think if you can learn about pacing that will help for sure . Stella has lots of helpful information that will help you.
for me fibro has its challenges however I will NOT let it rule my life.
keep posting i know you will get the answers you want
all the best Andy
Hi andymoir. Thanks for your reply. Is Stella another member who posts on this forum?
I'm working on pacing at the moment. My schedule makes it difficult, though, since I have more to do on certain days than others so I cannot keep to the rule of sticking to the same amount of activity per day.
Sleepiness during the day thankfully isn't such a big problem for me. I am able to take rests without falling asleep. My main question is about the sleep-bed connection we try to establish during week 3, since I have no choice but to spend a lot of time in my bed during the day doing other activities. I can do the sleep restriction but I cannot stay out of my bed all day, so that part will have to come later once I have somewhere else to sit.
I just noticed that there's a discussion specifically for PVFS/ME/CFS. That might be a better place to continue, if this discussion is supposed to be for FM, so I'll post over there.
yes there are two different threads, you can post on either depending on your questions , so Sorry it's Suella and not Stella my thought I was having a blonde moment
Hi Janice – sorry to take so long to respond. I have been away and only doing minimalist style on the site, but I did note your post and kept it till I had a bit more time. I have been diagnosed with fibromyalgia and then undiagnosed again. I have two types of osteoarthritis – one fairly ordinary and one post menopausal erosive arthritis, which apparently my father passed down to me.
Fortunately I found the Alexander Technique years ago and also lots of complementary medicine. I have been spared surgery, including gall bladder as I found a way of treating it and getting rid of a lot of the stones, but not excluding hysterectomy, and I have constantly come back to the AT and have also had a lot of acupuncture and Chinese and homeopathic medicines.
Now I have been diagnosed with Post Viral Fatigue, trigeminal nerve damage all on top of my lifelong insomnia.
I may say here that the insomnia is no longer a 'problem'. I sleep very well in a wide range of circumstances and know that when I hit a bad patch there is usually a reason, such as additional stress, not following the Sleepio regime or in recent weeks a house sale falling through and a favourite uncle's transition to the spiritual world and his daughter's rather hasty cremation of his physical body- but that is another matter.
I take standard painkillers and also Tramadol and Amitriptline as a boost to the pain relief. I have decided that I will need a serious spell in the one place with good sleep before I venture very slowly off the latter drug.
Your ailments sound horrendous but your spirit is great. While everyone else was organising Tupperware parties I was indeed organising pity parties!! I think most of us need a period of settled, quality sleep before we get to know the benefits that will have on pain reduction. I am a great believer that my higher power is just waiting for me to spend more time in prayer, relaxation and meditation before very gently saying 'you see I have been nudging you about this all your life and I am so glad that you can now enjoy your closing years and have more fun.'
When I was in my thirties ( a loooooooooooooong time ago) I discovered the poem about growing old and wearing purple and decided I wouldn't wait till I got old – so I have a lot of purple in my wardrobe. Did people tell you that you were a 'fighter' when you survived cancer? A couple of my nearest and dearest have been down that track and decided that 'fighting' was not a helpful way to think about it. My sister in law finished her radio therapy, preceded by chemo therapy last week so the flags are out again and I am going to Scotland to see her next week to see what we can do about the post treatment dip.
That's a bit of a ramble Janice. I think by now you must be on session 4 or so – hope the sleep restriction is going well and that you are getting the idea that the fruits of the Sleepio programme are yet to come but they are sweet when they do.
All the best to you.
this is cat a fellow insomniac.
Hello Suella, I am writing to ask about Bruce Campbell's course. The site is very good but I have not been able to find out how I can do the course and get teh book in UK. All best wishes for your own health, Kate
I recommend it vey highly. It has supported me in my journey towards improvment and wellnesss admirably.
Go to the site http://www.cfidsselfhelp.org/ and look at the blue box on the left hand side. I paid with my visa card.
It is an online course, and has free back up and support courses forever after you do the first course.
ME/CFS is a chronic problem and the ongoing support has been really important to me.
Let me know how you get on.
Thanks Suella, I will follow this up. My instinct is to maximise what I can achieve with Sleepio first, best wishes Kate
Sleep is the first thing I was told by the NHS clinic in Derby to improve. I used a CD player to keep me in bed and either entertained or put to sleep. The Prof's downloads are very helpful here.
Best of Luck!
Thanks, Suella, for the link. It was helpful!,
Hi, to everyone. New to Sleepio and this forum. I was diagnosed with Fibro in March.
And yes, extreme cold and extreme heat kill me! The cold makes the pain worse and heat exhausts me.
I also have arthritis and my doctor suspects something autoimmune may be going on. On first glance, this thread looks like it may be helpful I've already overhauled my diet and found a lot of food allergies/intolerance that have been adding to my insomnia issues. I have been wheat and dairy free for about a year which has been a big help.
Since developing FM I am never sleepy and tend to keep moving to lessen the pain. Does anyone also experience this ?
Janice, I am sorry. You have been “through the ringer” physically. I am at that place too. I have a cervical surgery scheduled for next month. I am at the point (pain) that I just want my neck fixed so the pain will go away. But, I am afraid because I had lumbar surgery last year and my lower back is worse than before the surgery. I decide to join the Y and see if water arobics help at all. Living with pain makes it very difficult to relax and get the sleep needed. Hang in there Janice.
My son was in an auto-motorcycle accident in 1976 when he was six years old. As a result he became a non verbal, blind, quadriplegic. I took care of him for 30 years before he passed away in 2006. Caring for him was a work of love. His brain damage left him a perpetual six year old. Which, was delightful in many ways. Always smiling and laughing despite constant seizures and respiratory illnesses. When he was alive I had chronic sadness and then when he passed I went into a deep depression.I have tried antidepressants but they just make me gain weight.In fact Lyrica had the opposite effect on me and gave me insomnia. Cymbalta worked for a time but I gained 30 pounds so I weaned myself off off and have lost 20 pounds. (Weaning off should be done with a doctors knowledge) My fibromylgia was diagnosed in 1982 and at that time not all doctors thought it was even a valid condition.First sign of arthritis was in 1998 with my hands. Now its everywhere. I also have restless legs and am so thankful for Requip. Actually Requip did help that aspect of my sleep. Anyone with restless legs knows what I am talking about. I have had a knee replacement, two surgeries to replace joints in my right foot. Rotator cuff surgery. Three bladder surgeries and last year my back surgery. I am facing two more surgeries. My neck and a revision of my lower back. This year I was diagnosed with sleep apena. Its quite funny to see my husband and myself in bed with matching cpap machines. Getting used to having a mask on my face has been a real challenge. Pain pills have been an issue also. I have now been regulated to a pain clinic. Since all of the recent deaths involving Vicoden and Percocet doctors have become very hesitant to prescribe Opiates .In fact, the clinic where I go will not prescribe any Opiates. I take one 2mg Dilaudid in the morning. I can't take it in the evening. It has a stimulating effect on me. But, it is nice not to have all the pain all the time. I am going to join the Y and start exercising as soon as I can with the upcoming surgeries.I am rambling on and apologize for the length of this post.I am hopeful Sleepio will improve my sleeping and am going to give it my all. Thank you Isaelaine3
I have chronic pancreatitis (that sometimes becomes acute) due to a congenital issue I am working on recovering (from a lot that dealt with it recently) and managing the pain. I have a lot ahead of me with this bout (and managing my chronic condition) but right now one of the things I also have to deal with is pain management and sleep. It affects sleep and also not enough sleep drains what little energy I have and makes it tougher to get done what I must each day and can lead to more pain…not a good cycle. Any one here go through pain and sleep issues? How do you get through it and sleep well? What if you wake up from it?
I have chronic migraines as well and used to get them daily but now it's just about once weekly unless I have rebound migraines that get me stuck in a medication induced cycle.
I have been getting back into meditation. Breathing techniques and visual imagery. Focusing on a thought and simply acknowledging it as just that and letting it pass. I tried yoga but with physical therapy it took too much out of my energy with the week (I needed break days in between), so maybe I will start later, or just continue breathing techniques.
Please let me know how you get through your day and nights if you can, it would be of a lot of help. Take care everyone :-).
I have fibromyalgia, CFS, restless legs, and a host of other medical issues, some of which doctors can't figure out. They have run out of tests to do! I am hoping my UP Jawbone bracelet will give me good info to help see what is really happening in my sleep. but don't think I can afford to pay for Sleepio (I am on disability and doing the 7 day free trial right now). I have seen many doctors and done extensive research already and don't know what Sleepio can do for me that I'm not already doing. I follow all the good sleep hygiene “rules” and have dramatically changed my diet to help with my health. I have wasted money on books that end up telling me no more than what I already know. This is a great forum and I love the chats! But money is tight. Can anyone give me insight about what Sleepio can do for me given the efforts and changes I have already made? Any advice would be appreciated!
Hello! Janice with the purple screws!!! Just happened to read your post as I have a friend with fibro..
All I want to say is Many Blessings to you for being such a wonderful, positive, loving person.
God be with you. Lolita.
Interested to read your comments, especially those on your response to low and high temperatures and also the improvements you've had since removing possible allergens. I was diagnosed with FM a year ago, and bad weather is certainly bad news for me: pain in hands and feet especially. There doesn't seem to be anything that can be done about this, and I'm just having to get used to being a human barometer! If you know of anything that helps, please do let me know.
With the exception of aubergines, which someone said could cause problems with FM (unproven in my case), I haven't yet tried removing any foods from my diet as my doctor said it would be very difficult to be certain that, for example, wheat was implicated. How easy did you find to remove wheat from your diet, and do you feel you can be sure that this had a positive effect?
All good wishes.