Or any ailment that stops you from sleeping?
How does sleep affect it and what medication, if any, do you take?
I was diagnosed with FMS 18mths ago, but I believe I've had it before but not taken much notice, until last October I had to leave my job, I was unable to cope with the pressure and demands. I worked for 17years as a GPs receptionist in the NHS work load was not being met. I'm 64 next April and I can't cope with the fatigue and pain. I've tried alsorts but nothing much works, but I have just started using CBD roll on oil on most painful spots and it helps alittle, bu5 doesn't last.
I have fibromyalgia and OA and occasional IBS and restless legs. I need a shoulder replacement on Rt. Had 1 on left 3 yrs ago, seemed to be perfect but been getting aching on that side lately. Waking up with mild headaches lately, achy tenderness in neck at back. Yoga exs stretching neck help. Been taking Pregabalin morning snd night for years, and if uncomfortable in bed take ibuprofen, sometimes with paracetamol and half a 5mg diazepam tablet to get to sleep – not every night. But on really bad nights I resort to nitrazepam if desperate to have a good nights sleep. I dont like antihistamine based sleep aids they give me a dry mouth. I have tried Mindfulness snd I have regular psychotherapy. I am 67, divorced and without any family and suffer from depression and loneliness.
I am bedridden majority of the time, will sleep still work if I spend the time in bed that you recommended staying out of . bed?
You are an Amazing person with a powerful story! You have gone through very rough times but been able to care for your son the way you did is what the real meaning of love is all about. Simply beautiful! And I really hope you see it the same way and you can start feeling all better, you deserve it!!
Hi I am new to sleepio but having just watched the video, I was wondering if it will help me?
The only thing that keeps me from falling asleep and re-waking several times a night is pain.
I have fibro, arthritis, type 1 diabetes and spondylothesis with nerve compression causing terrible nerve pain in my right hip and leg. Just having the duvet on me can cause pain. I can only sleep sitting up. I am on a lot of meds, codeine, morphine patches, warfarin etc but cannot take Amitriptyline/Nortriptyline to help me sleep as even 5mg space me out.
I know I am not alone with this. Does anyone have any suggestions please?
I have Fibro, Osteoarthritis in my spine and other joints and Sarcoidosis in my lungs. I take Gabapentin for the fibro. It helps keep it to a dull roar but lately both my shoulders have been giving me extreme pain, even raising my arm to shoulder height is very painful. I am able to work through it and it usually gets better during the day but at night it is horrendous. I can barely stand to push myself up into a sitting position in bed. My Doctor blames Fibro but we were only on a virtual visit due to Covid -19 so I don't know.
Hi to you both – jab67 and mbe132
Three years ago I was diagnosed with fibromyalgia, by a rheumatologist. He said he could give so many people fibro just by stopping people sleeping properly.
My sleep was all over the place and has been for years. I also have depression. He touched all the joints and areas that were giving me problems. He pressed on other areas and I absolutely wanted to kick him!! The pain was so bad. I was also getting odd flare-ups. He out me in touch with a physiotherapist who deals with fibro patients. So I have been seeing her on and off for the past three years with an exercise programme.
Until about six weeks ago,the biggest help in combating my symptoms has been getting my sleep under control.
I was on 2.5-4 hours a night. Now I am on 5.30-7.00 hours (7 being wonderful but doesn’t happen all the time!) I joined sleepio in November 2019. I’m still here following the rules to keep myself on track. I’ve hit blips but sorted myself out again by following the principles of the programme. 8)
Now that my sleep is better, I’ve been doing running again. I was a good runner at school, but that was eons ago! Last year, on a dog walk, I decided to have a go at a gentle jog – kept it up and did Couch to 5, a gentle programme to get you moving. Then I joined parkrun, slow and steady! I stopped running as the fibro was bad again, so just volunteered when I could bare to stand for long periods. Got sleep sorted and now I’m running every other day!
On the days in between I do exercises in the garden when I wake up early – any time from 5.30 onwards.
I do it in the sunshine to make the most the early morning sun resetting my circadian rhythm (body clock). This is very important for your sleep patterns and your health in general.
Since February this year, I have lost two stone, working hard on exercise and dieting…lockdown has helped cos we cannot go out to eat or to the pub!!
I wasn’t able to get down the stairs or any steps without going down them one by one. Now even first thing in the morning, I can run down without much pain at all. My hands were clawed when I held a cup of tea, they’re not now! That change happened within two weeks of stopping carbs and sugars.
I was on the Cambridge diet which wasn’t great. But much of the real change has happened in the last five weeks which is due to now being on a carnivore diet. I eat meat, eggs, fish, cheese.
The good quality sleep helped me get physically fitter and has helped my depression. Carnivore diet has helped with less inflammation. No processed food, no sugars, no carbs.
My daughter asked me to try the diet for a month…I can not go back to being in pain, so I’ll stay carnivore for a while longer and maybe introduce some foods at some point.
I’m not saying this is the be all and end all, but getting sleep will put you in a better frame of mind and the diet?
Well, it’s entirely up to you. If you want to change your diet and have less inflammation get rid of the sugars and carbs as they are inflammatory.
Btw – I haven’t had so much energy in years! My physio cannot believe the change.
Do some research on he carnivore diet – it’s not for everyone but it has helped me. I can even unscrew bottle tops again!! Yay!
Wow Kurly, That is very interesting. The carnivore diet sounds like it may be right up my alley because I like eating meat fish eggs and cheese. I'll have to check that out. Glad to hear you are doing so well.
Hi there mbe
Honestly it’s worth a try!! For me with fibromyalgia, I had to do something so it’s a bit of an elimination diet.
As I said, I do hope to introduce salads and some veg (I do miss the variety!!).
But to be honest, I just don’t think about food the way I used to – before, any diet I followed meant I was constantly hungry and thinking of the next meal! Take today, I know I’m probably going to have an omelette with something for lunch and loads of fish and prawns for dinner tonight. Last night was a chicken breast and four lamb chops…they were small and my OH ate most of the fatty bits that weren’t quite burnt enough for me!! Lol!
But an important thing on carnivore is when you’ve eaten, you are full – so if you think 'ooh I could just eat some pudding!' Think 'Ok, well I can’t have pudding, can I manage another pile of chicken (prawns/mince/chop)?? These days every time I look at any more meat I just know I cannot eat any more, so I know I’m satiated and it’s naturally good food and I’m losing weight too!
There will be peeps who totally disagree because of what we have been told and (pardon the pun) force-fed and lied to about diet for years!
Try it for a week or two to see if you have any difference in your pain, and do let me know!!
Kurly Wurly :)
I have several health issues that I believe are the cause of my sleep issues along with a 60 hr a week over night job. I have scoliosis, psoriatic arthritis in every joint, under active thyroid, 9 different meds and a shot monthly. If I sleep too much I am in pain and if I dont sleep enough I am still in pain but I have an attitude to go along with it and no drive or positivity to get me through the night. I have tried slleping aids and I had severe dreams sometimes nightmares, would wake up late, would have no drive and just lethargic.
I was diagnosed with fibromyalgia in 2010. I took Seroquel for 8 years to help with sleep and amitriptyline before that. I still take Gabapentin. In 2011 I went dairy free and gluten free which greatly decreased my pain level. I also started taking Magnesium Glycinate 800 mg due to pain using up a lot of mag in the body. Hot yoga really loosened up the tight painful areas like in my hips. I had monthly massages. I was later diagnosed with arthritis, Lyme, Mold and mercury toxicity. I worked with a functional medicine dr to detox. I began the Plant Paradox program (Dr Gundry) in summer of 2018. It has helped hundreds of thousands of people with auto immune issues. Emphasis is on no grains or night shades vegetables, limited fruit, no sugar, low carbs, and high quality meats. I lost 25 lbs easily without exercising. My knots are gone, pain nearly gone, decreased my gabapentin from 2400 to 1200 mg/day, stopped seroquel, and feel so much better!
I have several autoimmune diseases, since they like to cluster. RA & Psoriatic arthritis, Fibromyalgia, Scleroderma, Raynaud's, Sjogrens Syndrome, and Asthma. We all seem to have the excruciating pain in common that keep us awake squirming around to find a comfy position. I've run the gamut of pain killers, and found many of the addictive ones only made the rebound pain more intense. I've found I can endure the pain better without pain killers than with the narcotics that can temporarily dull it and come with their own issues. I work a full time administrative job, help care for an aging parent who lives alone, and maintain our home. I have never missed a day of work due to my conditions. I force myself to push through; although sometimes with tears. I know if I give in once I will eventually give up, so I always force myself to tackle what must be done. No extras though!
I have tried multiple anti-inflammatory diets, but they only seem effective for brief periods of time. I do minimize my sugar intake and foods known to irritate inflammation.
All in all there are decent days and horrible days. I try to live the decent days to their fullest, and endure the awful ones. I just keep praying researchers will find something to help us. We all have days we want to throw in the towel, but the few hours or days the pain is tolerable I believe make it worth fighting through the rough ones.
Are there others who dream they are being tortured only to awake in pain?
Wishing everyone more minutes and hours of minimal pain and hours of peaceful sleep.
Hi sleepio community. I have Ehlers Danlos. It is the main cause of my insomnia. It is very difficult to fall asleep because of the discomfort and acute pain. I simply cannot find a position that is bearable. Then pain wakes me up again multiple times, along with my dysfunctional organs, and I struggle to fall asleep all over again. At the moment, the heat makes things even worse, since EDS also comes with the inability to deal with the heat. Wish you all luck
You too Wo, I empathise, as I have RA and Fibro myself, I find the easiest way to cope with chronic insomnia is to not fight it, just try to take my mind off it and any pain or discomfort by reading etc until I feel tired enough to go back to sleep (or until the painkillers have worked). I'll often get up and make a decaff drink, that is soothing. There isn't much of a psychological element when you just cant get comfy. I sleep a bit later in the mornings to try to catch up. I wish people would realise sometimes insomnia is not really caused by negative thought processes…
I'm not sure if I have Fibro, but I think I must. I have chronic fatigue and brain fog on a daily basis. I have fairly severe arthritis and the Doctor just informed me that I need a knee replacement at 60 yo. I used to be so very physically fit, a rock climber and runner and now I am overweight and losing my health on a daily basis it seems. Mainly I just feel exhausted after about two hours of awakening and throughout the day. I have to consume large amounts of caffeine to function. I also get very fatigued after eating nearly every meal. I have been checked for diabetes, and hypothyroidism and my labs are always normal or close to normal.
I'm not sure what to do. I have some mental health issues but I truly do not feel depressed. I work full time as an engineer but some days are pretty nonfunctional and I have a hard time keeping up at times because I just don't have the energy. Putting in 40 hours onsite is exhausting and I miss working at home because I can adjust my sleep and work to maximize the “good” productive time. I am getting older but I see my friends at the same age and their health and mental capacity is much better. I have been to tons of doctors and had my blood panel checked but nothing usual turns up in the lab work.
It is very frustrating and usually I get the “it must all be in your mind” type counseling. I take wellbutrin and I don't take medicine like sedatives because all of them make me very tired. I've pretty much determine that this will never get better but I though maybe I have sleep apnea or something similar. What to do next?
What country are you in? I ask I'll see if I can help you some, but it does depend on where you are.
Hi thank you for your tips I will try no white sugar I also have a Hoffa fat pad impingement and a cyst on the back off my knee. The doctors told me to try this for my sleep. So we just need to get on with it ? Thanks tamie.
Hi yes. I have arthritis in both knees and a Hoffa fat pad impingement and a backer cyst. I am only 43 and I have always been to the gym 3 times a week my job was very fiscal so I have been off for a year. Has anyone heard off these other things I have ? Also my right hand has started to shake and at night the plan on my had throbs :( thanks tamie.
First, please note these threads go back years and TruBlue hasn't been on Sleepio in well over a year! You can click on someone's user name to see if they have recently visited.
I think you mean you live in Scotland!
I think you are saying you have arthritis, not fibromyalgia. I know about resources for people with fibro and ME/CFS. When you have painful physical problems that are keeping you awake at night, they may need to be addressed before SR. This is because you may not find it possible to reach a high SE when pain is waking you up. The SR window assumes that you'll be able to reach better efficiency in a short time and have your window extended. The intention is not to keep you on a restricted window for months. Does this make sense? You can also ask the weekly experts about this. I've had some injuries and physical stuff this past year, and my opinion here is what I've gathered from my questions to them.
So what you need to do is try to resolve these physical issues to the point that pain is not waking you up at night.
I'm not familiar with your particular issues. Sorry! I've had several hand problems over the years, and have found the best people to help (in the USA) are hand surgeons--the ones who exhaust the non-surgical options before considering surgery--and hand therapists. Generally here you get a prescription for hand therapy from a hand surgeon. I know in the UK you depend on your GPs for referrals. A neurologist could also be helpful.