Can anyone help with sleep advice and... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Can anyone help with sleep advice and coming to terms with these conditions?

Cat1969 profile image

Hi recently diagnosed with fibamyelgia and osteoarthritis , I am feeling very overwhelmed and although everyone keeps telling me it's good news that we finally know I haven't taken it very well, im only 37 I don't want to live like this for the rest of my life! So my 2 questions are how can I get some sleep? And any advice how to take this all in!

50 Replies

Hiya, I'm 49 and my health has been hideous this year. I've also acquired a permanent disability in my arm as the result of a fall, caused by everything else. I have been dreading my next birthday anyway and now I feel even worse, old and washed up. So I get exactly what you mean. That's why they call it life changing I guess! I wish I knew the answer, but I think with time comes acceptance like with mourning. Because we're grieving our health. It's not what we envisaged. So I'd say time and being kind to yourself. And speak with your GP about the unbearable insomnia. Because that won't be helping you at all with your health and mind. You will find ways of coping as you go along. Sharing hints and tips. Don't read too much Internet stuff. It causes overload. Just give it some time and remember that your health is a priority but living life, albeit a slightly different one, is still more than possible. Keep your chin up. Xxx

Cat1969 profile image
Cat1969 in reply to Mrslebon1

Thank you 😊 I've made a doctors appointment hopefully he can help! Xx

Farmerboy profile image
Farmerboy in reply to Mrslebon1

Hello that was a lovely response in your post. I haven’t got Fibromyalgia but have having had spinal surgery then during my recovery I was diagnosed with MS knowing some one with progressive MS and his total disability and total dependence on his wife for everything. We the newly diagnosed with a life changing injury, diagnosis or permanent health conditions. We need all the mental strength we can muster and as you said find acceptance of our new way of living, it’s our, my Fibromyalgia not any bodies else’s. We must look for sympathy but be thankful that people acknowledge the conditions and show compassion for your disability,conditions. As for gaining information for sites, social media ect to much information can and will lead you to dark places and the exaggeration of knowing what the future may or could hold for yourself and others like you is and will become a minefield. I downloaded lots of pdf files from the MS site and still download updates and stories, but do I read them no they are there for reference to share of snd when needed. I could say I am lucky as my MS is R&R but hopefully it will remain that way for many years.

ShelWhitt profile image
ShelWhitt in reply to Farmerboy

Hello Farmerboy. You must live in a different world to me. I have not received any sympathy or compassion and I have been living this nightmare for over35 years; bascially because people have never heard of it, or are not interested because you look 'normal' so are a whinger or hyochondriac wanting attention or they have their own problems and don't want to take on board anyone elses. All of which I can understand because if I hadn't got it I wouldn't believe it either. So until it get's as much publicity as long term covis, which seems to have similar life affecting conseqences I don't think there is any hope. Sorry to e sch a pessmst t tht has een my experence even wthn my own famly. Compter ovoslh payng p mow as well.

Farmerboy profile image
Farmerboy in reply to ShelWhitt

Hello again it appears that people know about cancer, dementia,autism and MS. But the illness’s Fibromyalgia is not know by joe public let alone the medical professionals, so we you and I have a struggle explaining our and your symptoms and how it effects us on a daily basis the side effects that we have from the medications. Some people are ready to listen and learn but few understand or just nod their head confused while the occasional person is clued up on the subject. When I joined this group to offer advice reference PIP and any other things I may be able to assist with I looked up Fibromyalgia and now have a better understanding of the conditions that people have to contend with on a daily basis.

I was comforted by your post as I feel much the same. I have never been officially diagnosed but I have had every symptom of fibro for over seven years. My GP denies fibro exists, couldn't care less and I have not been able to get further than the receptionist for the last year. I look fine, my family are not interested and I can't just sit at home complaining all the time. I am completely fed up. It is so nice to find this site and unload in the hope that people understand the problems.

That's awful, my doctor was useless too, in the end I had to pay to see a private consultant to get some answers, maybe you could do that??

Hi. It is good to actually find someone who actually agrees with me. I try not to take it personally but so many of the fellow sufferers posting on here seem to have understanding and compassionate friends and family wanting to help and at least showing an interest. Unfortunately that has not been my experience. Because I look OK and have carried on living a relatively normal life, it is totally ignored by everyone within my circle. No one ever asks how I am, and I am now also caring for DH with dementia, copd, is barely mobile and has other health issues and although he is aware I am not well, even he tends to dismiss it unless it interferes with things I can do for him. I no longer mention it and if anyone does bother to comment if I am not my usual self I pass it off and say I am having a bad day, have a migraine, or my back is playing up. It is useless to do anything else. I used to get angry and bitter but eventually realised that is futile so I now try to accept that this is how it is and have withdrawn pretty much socially, but that hasn't been difficult during the last 18 months.

Cat1969 profile image
Cat1969 in reply to ShelWhitt

My family are exactly the same, because they can't see the pain it's not there! On bad days when I havent done anything at home, my partner comes home and says "what you been doing all day?" I feel like screaming at him that I'm just trying to get through the day!

ShelWhitt profile image
ShelWhitt in reply to Cat1969

It is so frustrating. That is why this site if so helpful. We can vent and everyone on here does understand, so no criticism just understanding, which is what we actually need when there is no practical help. I have ditched medication after suffering from side effects which made me feel worse. I think to doc has given up, so it is case of getting through each day as best I can. Happily some days are a bit better than others.

Hiya hun go to a different GP honestly there are a lot out there who are sympathetic!! And yes nobody understands just what you have but I got some downloads and showed my bairns and hubby well all my family really but they have real illnesses like arthritis or MS!! You know what I mean?

Crazycav profile image
Crazycav in reply to ShelWhitt

Hiya hun I’ve had this fibromyalgia since I was a bairn but it was”growing pains” after I stopped growing it was rheumatoid arthritis which my mam had and it was ok I knew what that was but then I was diagnosed with fibromyalgia which I hadn’t heard of and then drs were saying it didn’t excist and it was all in the mind even House that medical program said it didn’t!! So I never went to drs for pain or anything else for years and I couldn’t tell people they would think I was nuts!! So it’s so great to have all these people validating what I’ve had forever!! And yes its the worst and you feel alone through those sleepless nights but you’re not help is now out there!

Mrslebon1 profile image
Mrslebon1 in reply to Farmerboy

Thanks Farmerboy 👍🏼

Sorry to hear you have joined the club. I just take things one day at a time but sometimes it hour by hour. I have found out what medication keeps me functional without having side effects that are more trouble than the benefits and the kind of diet/lifestyle (boring) that helps keeps things to a minimum. It took me years to do it and the F-word can still throw a pretty big spanner into the works on occasion.As for keeping the head screwed on, I work on avoiding the 'poor me' thoughts and concentrate on the good side of life (there's a song about that).

There is always always someone worse off, though if anyone has a chainsaw I could borrow I would like to remove my feet and head as today they are not agreeing with the rest of my body.

Cat1969 profile image
Cat1969 in reply to Makie-Uppie

That is so true about someone always worse off, thank you 😊 that's put things into a bit of perspective! I was only diagnosed last night so I have a lot to learn!!!

LisaSnow profile image
LisaSnowFMA UK Volunteer

Sleep is probably not so difficult to fix if you take prescriptions commonly used in fibromyalgia before bed time.

Cat1969 profile image
Cat1969 in reply to LisaSnow

Thank you, what are these tablets?? My GP is absolutely useless

Makie-Uppie profile image
Makie-Uppie in reply to Cat1969

I usually aim for eleven o'clock that is when I would like in theory to be asleep. Unless of course there is something more interesting to be doing at that time. 2 hours before the intended sleep date I take one 30mg Mirtazapine tablet, about 1one hour before sleepy time I take one 0.088mg Pramipexole Tablet. At eleven, if I can, I lie down. Sometimes I sleep sometimes I have to find something else to do. But if I do sleep just taking those two tablets means I stay asleep and wake up without a hangover which other tablets gave me and the feeling I have actually gotten something out of it. Sometimes I spend days and nights flailing about but there is absolutely nothing I can do about it.

Cat1969 profile image
Cat1969 in reply to Makie-Uppie

Thank you, that's all really helpful 😊

Cat00 profile image
Cat00 in reply to Makie-Uppie

I've been an insomniac all my life and the docs won't give me anything to help me sleep? I take Amitrityline as that helps me sleep but that was prescribed for migraines. Every time I go to the GP they tell me there is nothing they can do, where do you get/hear about the drugs you mentioned?

Makie-Uppie profile image
Makie-Uppie in reply to Cat00

Because of the pain I'm in I was spending nights flailing around and reached a point were I was suffering the effects of severe sleep deprivation. Among the effects were inability to think, I kept getting infections, I couldn't keep food down, I had no reflexes, kept shaking and a load of other things the funniest of which I could fall asleep for a second standing up.When my heart began to trip they had to take it seriously and that was the combination we ended up with. It took a while and sleeping tablets were used until we found out what worked. They are antidepressants but the side effects are what we are after, they make you drowsy and when you get to sleep they keep you asleep. I find it strange your lack of sleep is not being looked at, the medics I met were of the opinion it is as bad as smoking for your health.

I know sleeping tablets can be dangerous for some people to have but I was never given more than ten at a time until we worked out what would help me sleep.

Cat00 profile image
Cat00 in reply to Makie-Uppie

I have almost been hospitalized due to sleep deprivation but bc I went to boarding school which kind of gave PTSD I wouldn't stay on a ward, plus I can't sleep in hospital bc it was too noisey etc.

When I gave birth to me daughter I hadn't slept for 3 nights, I was supposed to be kept in for another 2 nights but even after a massive injection of diazepam I only slept for half an hour bc someone came in the empty the bin. It meant I couldn't breast feed bc of the drugs in my system I had to wait 24 hrs. They decided I had to go home bc it was the only way I could sleep.

I get 10 sleeping every 6 months and those I have to fight for. I've had 4 nervous breakdowns brought on by pain and sleep deprivation and they've always told me there's nothing they can do, even after going to a sleep clinic? Makes me so angry!

I have chronic migraines and about 5 other conditions so it's quite hard to tell what my various symptoms relate too, but your sound worse, well that is my heart rate is very high apparently but not going wonky like yours!

jools56 profile image
jools56 in reply to Cat1969

Hi Cat 1969, my GP said good sleep was key to managing fibro, as this is when the body heals itself. He put me on 10mg Amitriptyline which I take at night. Your GP might also prescribe you this; I have found it a lifesaver. it isn't a cure but it helps manage the condition. Couple of tips...give it time to work as you might get side effects at first, like dry mouth and feeling groggy first thing, so give it a couple of weeks. I was told to take mine 2 hrs before sleep, but I was falling asleep at 8.30 pm. So just see what works for you. 20 to 40 minutes before I plan to sleep is my ideal. Don't be alarmed by the fact that it is labelled as an antidepressant. My doc said it was not found to be very effective (unless you have massive doses) but it is effective for nerve pain. Good luck and I hope your GP helps.

Cat1969 profile image
Cat1969 in reply to jools56

Thank you 😊 lots of people have mentioned amatripaline so I'm going to mention it to my GP

Sorry you’re feeling a bit overwhelmed. I was diagnosed with Fibromyalgia at age 22. For years I ignored it and too negative coping strategies to deal with the pain. I’m now 48 and have arthritis through my spine. Over the years I was told so many different tips to deal with this pain. It’s all trial and error. 4 years ago I had another accident and fell on my lower spine I had extreme difficulty walking. After seeing the rheumatologist she decided I needed to slow everything down , kind of hard in a busy household. I slowly started walking more using a Nordic walking stick. Recently I stopped drinking, lowered my stress levels, cut down on trying to clean my house in 2 days and changed my diet ( no processed foods) with lots of fresh fruit, veg and fish. I keep to a strict routine up at 6am and bed by 10pm. I feel so much better. Mind you I didn’t sleep( deep sleep) for 25 years properly so I was placed on a very small dose of amitryptaline which I take at bed with 1000mg paracetamol. So just see what works for you but please remember you must try and move every 20 minutes for the muscles this will help fibromyalgia and the osteoarthritis.

The best of luck and stay positive.

Cat1969 profile image
Cat1969 in reply to Greykitty

Thank you ever so much for the advice, all much appreciated xx

Hi. Sorry to hear you have been diagnosed with Fibromyalgia and Osteoarthritis. I was diagnosed with Fibromyalgia last September, and Psoriatic Arthritis (very similar to Rheumatoid Arthritis) in 2017. As I was already seeing a rheumatologist for my arthritis, it was he who diagnosed and is treating my Fibromyalgia. Has your doctor referred you to a rheumatologist? I’m not sure about everyone on this site, but it is common that a doctor will refer a person to a rheumatologist as these health professionals, along with autoimmune/ inflammatory conditions, also deal with Fibromyalgia.I can understand how overwhelming this must be, especially as you are still young. I did feel very down when I was first diagnosed, but in time I am learning to take each day as it comes. It was difficult at first, but being kind to yourself and thinking about the positive things in life helped. It can take a while coming to terms with life changing health conditions, but with a little patience, and taking things at a pace you are comfortable with, you should find ways of dealing with things. I get good days, and not so good days (I don’t think of them as “bad” days. Personally, I have found it a more positive approach of seeing it like this. A bit like is a glass half empty, or half full?).

My rheumatologist first prescribed amitriptyline, but I am now switching to duloxetine to see if that is better for me. He did say that sleep was key to getting better days, which a lot of fibromyalgia sufferers struggle with. The medication is supposed to help with the sleep and pain, and I have gained a little benefit so far, but trying to find the best type of medication for me. I have also tried soaking in a warm bath, meditation and similar things such as body scan (you could maybe check out apps like headspace). Sometimes these have helped a little with regards to sleep.

Remember, try to stay positive, even though at times this is difficult, but understand what you’re dealing with is not easy and be kind to yourself if you’re having a not so good day. You will learn to deal with this and find things to enjoy in life and look forward to. This is a great site for people like us. If you’re feeling down you can always reach out here and get some positive vibes and support from others who are dealing with the same things as yourself. Wishing you well and I hope that thing will improve for you very soon xx

Thank you ever so much, you are right just in one morning of hearing other people's stories its made me feel better, like I'm not on my own anymore if that makes sense!! Xx

Hi cat im 34 was diagnosed at 32 still trying to come to terms with painful symptoms of this condition, sleep is vital so speak to a good gp or rheumatologist i take medication to sleep x

Cat1969 profile image
Cat1969 in reply to Bakermissy77

Thank you, that seems to be the general jist I'm getting that I need some form of tablets to help with the sleep pattern 😴

Don't forget to attend to the obvious. Black-out blinds to ensure bedroom is dark, ventilation, not to hot or cold. The perfect comfort Mattress, pillow, covers etc. No phone or TV, screens etc in the bedroom. Last tea coffee at 6pm, no later. Or midday if that doesn't help! Try to have a routine. Bedtime, getting up time, even if you have no plans. Always leave your troubles behind before setting out for the land of Nod. You can do this how you please. Take off your rucksack, put down suitcases, park up your truck and leave it be. Some folks ask their Angels to attend to helping them clean away the cares of the day. Then, if you find yourself awake, still fretting or mulling, 'Darn Fibro...' You go back and drop those thoughts off too.

Sleep needs to be about nice stuff. Teddy bears, fluffy bunnies, unicorns and angels..

Meds help some folks. Meds can really mess with others. Don't forget coming off some meds can be very difficult and some have said, it's impossible. I recommend reading about the subject. But only you can figure what is right for you. I've had some horrid experiences with my GP saying Grr you are just making a fuss again and it's all in your head, and then had to be told by a different GP to stop taking the meds pronto because I'm having a serious reaction!! Oopsie!

Fibro meds are not Smarties. All are poisons. For some they are life savers, for others, they get lost under one then two then a whole cocktail of drugs. It depends on you, your constitution and your GP too.

Fibro is a Bummer, with arthritis too? Double Bummer! But just remember, no-one (hardly) want's to hear how Bummed-out you are. They are probably dealing with their own stuff and want to be looking at the good stuff. That's your job now; Finding the silver linings. There is good wherever you look just so long as you look at it in the right way. Make the most of what you have and share it with your loved ones. If that sounds harsh, then I guess that's life; Pretty harsh at times. Telling folks, on and on, how you have unfixable pain just upsets them because they can't fix it for you either.

You will find your way through. Good diet, exercise, posture, relaxation; Read up all about it. And stop with the pushing your body further that it can manage. Just because you start a job, doesn't mean you have to carry on and on til it's finished. Do little and often. Listen to your body. Unless you want more pain, less sleep, more misery, more pain, less sleep, more hopelessness, less friends, more hopelessness, less sleep, more pain... You will find your balance if you try.

Cat1969 profile image
Cat1969 in reply to Al10

Think this is probably the best advice I've had with 😊 thank you 😊

Al10 profile image
Al10 in reply to Cat1969

That's a nice thing to say. Makes being a fibro all worth while 😉

Hello 😀 I make a conscious effort to do two things:1. To take in those moments when I can do things that to others may seem mundane: Marvel over a cup of warm tea or a nice piece of cake, a good conversation.

2. Make sure I spend at least 20 minutes every day outside in my garden (or park or beach) just listening to nature : wind, grass, birds, bees etc.

And then I bank them, file them away because when I'm at my lowest @ 4am and the world seems very dark & my mind sometimes goes places I wish it didn't, I replay those memories one by one, taking them in, savouring how the sun felt on my skin or that piece of cake made me feel happy.

I suppose it's about trying to find joy in smaller but no less meaningful ways. I read a book once about people living with terminal cancer and what stuck with me was that they were never wishing to go abroad or travel or do anything that we may consider remarkable. What they wanted was one more cup of tea with friends and family, one more conversation. Those are the things that really matter or at least they do to me.

💜

in reply to Roo1972

Hi Roo1972, you made me cry because I’m sad we go through what we do but you put it so beautifully, the place I find true beauty is inside not on the outside All my warmest wishes to you 💐💐💐💐

Roo1972 profile image
Roo1972 in reply to

Thank you 💜And to you too.

LisaSnow profile image
LisaSnowFMA UK Volunteer

Do you feel you have trouble sleeping because of pain? Or too much ruminating thoughts? Or another physical symptom? It is always best to address root cause if it can be found. I hate to admit that my doctor is right. But she is certainly correct about the importance of physical activity. The more frequently I exercise (mostly walking but with resistance band too), the less pain I am in. Perhaps you can make a commitment to do it too?

Roo1972 profile image
Roo1972 in reply to LisaSnow

It's complex isn't it. As I discussed with my GP is my anxiety/low mood due to my pain or is my low mood/anxiety making my pain worse. If I'm honest, for me, the pain is creating the mood not the other way round. Why? Because I struggle without answers, without knowing what will or wont trigger another flare up. Life then becomes so uncertain: one day I might go for a walk, feel great. The next, my partner is going to get the car cos my neck and shoulders have flared up and I feel like someone is trying to drill a hole through my head. I agree though I do try to stay active but probably not as much as I should or would like.

Hello Cat1961, a doctor told me several years ago that taking melatonin around 7pm and it will help with the circadian rhythm get back on track. It helped up until recently. It use to kick in around 10-11:00pm but my doctor changed a couple of my meds around which I’m going to change back when I see her this week. I know how you feel of being young and dealing with this illness. I was 31 when it hit me and was diagnosed 2yrs later which fibromyalgia and CFS/ME but already had GERD, IBS, hypothyroidism with goiters and maybe gastritis oh and depression which at that time was situational. I felt the same way as you are when I was diagnosed. I wanted to find a cure. I got involved in a research study that was over a 10yr stretch phase 1 &2. It was on identical twins who I so happen to have a healthy twin sister. They flew us out to Seattle WA for a week long of testing sleep study’s, EEG’s, EKG’s brain scans ( PET, MRI, and fMRI’s) exercise tolerance tests, all those psychological testing, tons of blood work, physical exams, and other stuff that I’m not recalling right now. Oh before going out they sent a 100page questionnaire book to fill out. They also tested to see that we were identical twins and social history. I have been involved in 2 other studies since then. I also Guinea pig myself in my own things that I ran across that was more alternative medicine but so far haven’t found a cure. It became a low on funds so had to stop plus my tools broke from so much over use. My advice would be get involved in Reseach studies when you run across them. It gave me a sense that I was going something to get one step closer to the cure. By the way I will turn 60 in a few weeks.

Cat1969 profile image
Cat1969 in reply to Sarahvit

Thank you do much 😊 im definitely going to look into that x

Sarahvit profile image
Sarahvit in reply to Cat1969

You are welcome and thank you for what ever you can do to help in getting us all who are effected with this illness one step closer to finding a cure. Bless you. 😊💜🦋

in reply to Sarahvit

Hi, I think your brave to do that, unfortunately in the uk it’s hard to get someone to listen or believe it’s still have a stiff upper lip and keep your head down and get on with things very 1900s xx😊

Sarahvit profile image
Sarahvit in reply to

That is sad Disgusted. That was why I got excited about the FM/a test is because it was down on paper making it just as failed as kidney disease, heart disease or a number of other diseases that show up in a lab report that you can look at and hold in your hands. To me it validates that fibromyalgia is just as real as diabetes and other life changing diagnosis. I have seen some study I think through HealthUnlocked that was over in the UK. It is just stumbling across a study on fibromyalgia and being in the right country or state. I don’t think of myself as brave but as someone who is tired of living with this illness. I know that the odds are against me as far as finding a cure but I look at each study as taking a step closer to the cure for fibromyalgia. We need to do what we can to bring awareness and step up to the plate in what ever way we can. I know it is different for everyone because this effects us in so many different ways. 😊💕🦋💜

in reply to Sarahvit

I totally agree I’ve struggled for so long trying to get a diagnosis some professionals see it as it’s not a real disease some see it as a mental health issue my skin biopsy-show chronic non specific inflammatory disease and bloods high crp but I’m still called a liar to the symptoms I’m suffering from, I know mentally I can’t fight anymore been knocked too many times I carried on working through the pandemic in the health service but one day I couldn’t get out of bed and the pain was so bad I said to myself at 62 enough was enough I’m living now off my savings but I will definitely look for some studies may I ask what test it was that actually diagnosed fibromyalgia?💐😊

Sarahvit profile image
Sarahvit in reply to

I feel your pain exhumation and stress. It was the FM/a test that I had but I have had people tell me since then that it was a scam and not an accurate test but I still feel it is better than nothing. It gave me the sense of validity on paper that this shows without any doubt that fibromyalgia is real. I was involved in a study where they drew blood🩸every 4 months and studied the bio markers and drew blood every time I had a change in my conditions such as a new diagnosis.

All the blood work you had and tissue biopsy sounds like would be used to diagnose fibromyalgia since it is an inflammatory disease 🦠. I never had the specific tissue biopsies you had but over the years thyroid, gallbladder, breast biopsies done which showed inflammation even when the surgeon cut into my abdomen and saw more then expected blood🩸sent off to rule out cancer. It was endometriosis. So I’m sure that some of my blood drawn for Reseach studies had those things which you had the results of high crp done but never was given that information. I never had the chance to save up like you did in life. What area of health care did you work in? I was a nurse RN now work part time as a CNA.

Hi. I take Amitryptiline every night at 7pm. Works a treat. Sleep loads better now. Also ask to be referred to IAPTS. CBT & counselling will be useful. It’s tough x People have no idea x

Thank you 😊 what's IAPTS??

JayCeon profile image
JayCeon in reply to Cat1969

IAPT = "Improving access to psychological therapies" (CBT = 'Cognitive behavioural therapy')

Amitriptyline before bed. Audio book timed for an hour usually does the trick.

Hi

I was prescribed Amitriptyline and Mitarzapine at night time and Gabapentin but still problems with the sleep.

You can try YUMI Gummies from Amazon, maybe could help you

All the best.

AS

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