Sleeppppppppppp

Bones, joints and muscles
1

Hi

Really need some help here,i was diagnosed with Fibro 2yrs ago,have tried Gabapentin,pregablin,codeine phosphate,all no help with the aches an pains,im now awaiting a pain clinic appointment,my main concern is coping on maybe 2hrs sleep a night ,my Gp does not seem to understand that 10 Zopiclon tablets to last 14 days are not doing it,i suffer severly from depression as well,so no sleep an depression an pain is really not a good combination,i have tried herbal remedies to help me sleep but no good,im so stressed out at the moment that i am really thinking whats the point of been here any longer if no one is willing to help!

2

This sounds awful. I used to suffer terrible insomnia until I changed my routine. I have a hot bath or shower every night and make sure I'm in bed by 9pm and I manage to get at least 7 hours sleep a night now. But I went weeks just cat napping thru the day it was awful x hope you find a way xx

3

I do the same now bath an 1hr reading no noise but still no joy,i wished i could cat nap during day but cant even manage that,im at my wits end,

4

Hi

I really know how your feeling I've been suffering for 10 years stuck on tramadol untill two months ago when I was officially diagnosed with this awful condition; just on my own experiences I've been on gabapentin didn't do anything I've been on lidacaine patches did nothing this was thru pain management clinic it was rhmatolagist that started to help at the moment I'm on 60 mg duluxitine which is used for to things pain and depression I take it two hours before bed I'm also on 80mg x2 a day of MST morphine sulfate tablets and oramorph when needed my main problem except pain is lack of sleep its just a rolling thing carnt sleep so tiered upset depressed more pain so I know exactly how you feel I have my wonderful wife that helps but deep down she doesn't understand the pain and I get angry because I here myself constantly say I'm hurting I'm in pain which does my head in so it must get to her me going on in currently about to start a couple of things thru nhs physio hydra therapy pool as heat is one thing that ease my syproms and also have acupuncture on nhs too hope your feeling ok remember your not alone ever this site is amazing for advice for a sholder take care x

5

Hi there, 

I cant offer more advice than what you probably know already about things to help you sleep but I was prescribed cymbalta/duloxetine. I havent taken it yet but i did alot of reading on it and it had many good reviews, many bad too but it seems to help peoples fibro alot, i also read about savella which seemed just as good in reviews.

They are both also anti depressants so maybe they could kill 2 birds with one stone, the pain and the depression. I dont think they help sleep directly but being in less pain and less depressed would probably allow your body to relax when it is supposed to. 

Have you tried melatonin? Alot of people has sucess with that. I also find Kirklands  sleep aid quite good and you dont need a prescription, they are Doxylamine Succinate which is an old drowsy making antihistamine.

Im sure you already know or have tried the following but here it is again.

1) Dont watch TV, use phone, laptop, tablet etc 2hrs before bed

2) have a nice lavender scented bath 1hr before bed

3) Read a book in bed for 1hr, preferably something dull or that your not that into

4) If able do some excercise outside earlier on in the day. Walkings good

5) Make sure you are full but not overstuffed before bed, turkey, bananas and milk have things in them that help promote sleep

6) Make sure yor room is warm but not too hot

7) take pain pills if needed 45 minutes before sleep

8) Get a diffuser, candle or one of those things that puff out fragranced oil and use lavender oil or any other calming oil

9) Massage you belly in bed in a clockwise motion whilst laying in bed.

10) Get up the same time everyday and go to bed the same time everyday so your body learns when to switch off

11) Write a journal before bed. Write down the things that are bothering you and the things you have to get done so that youve moved the stuff in your head onto paper hopefully allowing you to mentally relax,

12) If you can not get to sleep, dont look at the clock, dont get stressed just get up go and have a warm milk or read a book again and then try again in 30 minutes.

Good luck

6

So sorry to hear you're suffering so much, I feel for you.  In addition to the other bits of good advice already given, how about trying meditation techniques?  It was the one and only thing that helped my sleeplessness issues and specific mindfulness meditation techniques exist for pain reduction too - you may not even need to attend classes or pay fees either, there's lot of info on the web about the techniques and plenty of instructional vid clips on you tube too.  Hope you find something to help.

7

Hi Charlotte

Im on 210mg of Lofapramin Anti depressants already an have been for 18 months ,i only take ibruprofen for pain at the moment waiting on appointment,an GP gives me 10 Zopiclon tablets to last 14 days,which i take 2 at night for 5 nights,this allows me to get the 2hrs,so the nights i have nothing i bath read an my eyes are actually closing then something clicks an thats me done for the night,the longest ive gone with no sleep is 3days,i have explained this to my Gp but his not playing ball,his saying he does not want me addicted to the Zopiclon,I lost the plot last week an found a full box of codiene an took the lot an slept for 6hrs,now im beginning to feel like it again ive really had enough !

8

Do the Lofapramin work for you? Perhaps the medication is actually causing insomnia as a side effect or at least worsening it, it does say sleep disturbances as a known side effect. What about gp adding some amytriptilin as the most annoying side effect for people seem to be sleeping too much with ami?  

I feel really sorry for you, i hate not sleeping well, after 2-3 nights of not sleeping well i go into a really numb but anxious state. 

I hope things sort themselves out but i would ask my gp or a different gp for a medication review. See if they cant add something to it to help or change to something else. 

Please dont take a whole box of anything again, if you feel that bad again take yourself to the nearest a and e and tell them you need some help to sleep. Scream and shout until they sedate you. Your risking your life by taking a whole box of codeine.

Also try and work out when this really started, that may give you a hint as to the problem. If it was after a stressful event or after a medication or when pain became bad etc, then perhaps that will give a clue as to what needs to be done to reset things.

9

Thank you Charlotte for your advice an kind words,I have just had a telephone consultation with my GP an let rip on him,he is now referring me to a sleep clinic,also said he will be reading up on Fibro,it does not help when im also agrophobic,so everything is done by phone or email,although i did promise i will be attending the sleep clinic,well i say that now,feel like their is no help out there at all ,i also have PTSD .

10

Amertriptelin are good for sleeping and depression, Matrifen patches are good for pain, especially joint pain, I use both

11

I'm pleased he is going to refer you, I can't pretend to understand how hard it must be being agoraphobic and having ptsd as well as fibromyalgia and insomnia but please do what you can to get to the appointment as if they can sort the sleep situation out I would imagine that the other things may get a tad easier too. Sleep deprivation was used as a torture tool so it must really be affecting your physical and mental health negatively. I really think they need to review your meds and get you some sort of counselling too. I'm pretty sure they can arrange for a councillor to come to your house depending on your location. The nhs website says they offer cognitive behavioural therapy as a treatment and there is also a few agraphobia support groups online which might be worth joining. I'm sorry your going through all this, it must be so tough but don't stop fighting the Dr for the treatment that is available out there and don't stop believing in yourself that you can overcome the issues.

12

Thank you so much Charlotte it means alot,I do have a support worker who visits me once every 10 days he does all he can,I have tried therapy but was told by Physcotherapist im not ready to talk yet,which was true we are going to try again in a few months,Also i think your right my Meds do need reviewing ,lets hope me letting rip on GP today done some good,thanks again for your kind words .

13

I will look in to it loxie anything is worth a try thanks for your support.

14

Poor you I know how you must be feeling, I go through patches like that when I just can't seem to sleep no matter how tired I feel. It almost seems one just gets too overtired to sleep, a contradiction in terms I know, but there is no sense to this rotten curse Fibro. It is not surprising that you feel depressed with such little sleep. 

Best of luck and I hope you get some sleep soon. 

I take a low dose Pregablin. I have been tried on a number of other medications, antidepressants, migraine pills etc which all seemed to cause insomnia in me, which is contrary to the norm. for most people. So I would look carefully at whatever medication you are taking and try different medications to find the one that doesn't cause insomnia.

As well as Pregablin/Lyrica I take one sedating Antihistamine at night, to cope with my allergies, hay fever etc.

i also try to go to bed at the same time most nights, not nap much during the day. I also try and and be in low light for an hour or so before bed. Low light in the TV room etc. No going to the bathroom and turning on the bright light to clean ones teeth etc. before bed. I have a child's night light in my bathroom enough to see by without upsetting your night time biorhythms.

I also try to do mild exercise, most days, just enough without stirring up the dread Fibro beast. 

Stress I find stirs everything up too, so I try and do two 20 minute Meditations twice a day, this is on the advice of my specialist and it really seems to help. I find the guided body relaxation ones the most helpful.

15

Poor yous evil..it's such a huge problem for us all...hope this helps..be blessed, have a lovely day..:-) xxxx

 Amithriptilyne .  is a Nerve-pain blocker..with sleep assistance and minor anti-depressant)..

 Hiya seagul, .Amithriptilyne is  the only med I take for Fibro...gives me a great pain free sleep..- no pain..still feel a tad drowsy waking up...but that sleep is what makes this Fibro manageable for me..only get flare ups now..once  it was just constant  pain almost everywhere and sleepless nights..I take it 7pm before bed..it really does work wonders ( for me..that is,) we are all very different..I take 25 mg...never had it increased either ...started on 50mg but I was like a zombie...all the next day..dropped to 10mg for a while-still not too good but 25 mg is perfect for me..it is actually an antidepressant that works excellent for pain..it numbs the nerve ends and stops the pain from jumping on to the next nerve..hence a very painful body...the antidepressant is probably a lil bonus as most of get depressed from time to time..yes it does knock me out to give me that great sleep which is just sooo needed, to be able to deal with the pain etc the next day..but once I'm up and dressed..I'm fine.....Its great...16yrs down the track..have to be woken up in the morning..but once up and about I'm just fine.....when I was first on them I was like a zombie..but it's like a miracle med for me... it takes a while to settle in. ..also, please remember that less stress is the key to Fibro....be blessed..have a lovely day..:-) xxx

16

Sometimes it's hard to talk to a person. Have you tried writing things down? If you can do that without it being to painful then when you next see the therapist you could give her the notebook and let her read it? I find writing some things sometimes helpful as its like filing thoughts in your head, once they are in paper you can almost feel a sense of it being lifted off your shoulders. I'm sorry for whatever you have gone through that's caused the ptsd and agraphobia. I really hope you can get the help to overcome this. Just remember whatever happened you are strong as you are still here and still trying to move forward. Believe in yourself and keep fighting.

17

MELATONIN...in the US it is sold in the vitamin isle.

In the UK...you need a prescription.

It is amazing to help with sleep.  I tried every prescription medication for sleep...nothing worked.....Melatonin 10mg works.

18

Melatonin is available online for ordering to the UK.  

The NHS statement on melatonin is as follows: Melatonin was available from health-food shops in the UK before 1995, but it was banned from general sale on the grounds that it was a medicinal product (previously, it was considered a nutritional supplement). It is not available from pharmacies because it does not have a licence for sale as a medicine. People use melatonin to overcome jet lag. It's supposed to work by resetting the body's time-clock, tricking the brain into thinking it is night when the body still thinks it is daytime. You can buy melatonin on the internet, and abroad. It is not illegal to bring it back and not illegal to possess it. But you would be breaking the law if you imported large quantities for distribution or sale, because you would be selling or supplying an unlicensed medicinal product.  The reasoning behind this is that it is very unsuitable for certain individuals, as follows - 

Bleeding disorders: Melatonin might make bleeding worse in people with bleeding disorders.

High blood pressure: Melatonin can raise blood pressure in people who are taking certain medications to control blood pressure. Avoid using it.

Diabetes: Melatonin might increase blood sugar in people with diabetes. Monitor your blood sugar carefully, if you have diabetes and take melatonin.

Depression: Melatonin can make symptoms of depression worse.

Seizure disorders: Using melatonin might increase the risk of having a seizure.

Transplant recipients: Melatonin can increase immune function and might interfere with immunosuppressive therapy used by people receiving transplants. 

It obviouslly won't cause all or any of the above in everybody but it was considered sufficient cause to restrict its sale just in case.  

I brought some back from the states as all of my friends over there extolled its virtues.  I have to say it didnt help my sleep pattern at all, just made me drowsy at odd moments and gave me diabolical headaches, so I threw it out.

It may help others but caution should be taken as to whether the individual falls into one of the high risk categories or not.  It's not recommended at all for those under the age of 55 either.

Melatonin is a hormone found naturally in the body.

Only some people who have trouble sleeping have low levels of melatonin.  Melatonin used as medicine is usually made synthetically in a laboratory. The sub lingual form is the one designed for insomnia or shift work disorder. 

Hope the above info helps.

19

Very good information.  Makes sense that the UK took that stand in light of all that information. I had read about the information prior to taking it and for me....I have weighed the benefits with my DR vs. the determental effects it could have on me since I do have some of the problems mentioned above.