Sleep difficulties

[fibropatient]

Hi, I was diagnosed with Rheumatoid Arthritis in 1983 and secondary fibromyalgia about 15 years later. I was taking Amitriptyline - 30mgs - 100 mgs. However GP insisted that I reduce dosage to 30mgs, which I did. However since then I have had problems getting off to sleep. I tried zopiclone as advised by GP which was great for the week I was allowed to take them. But now I'm back to square one. I read that Gabapentin is great for fibro and sleep. So I am trying them, I'm taking 600 mgs twice a day which is great for reducing fibro pains but I still am suffering with trying to get off to sleep and then when I do sleep it is only a light sleep. Can anyone suggest anything to help please.

[Dizzytwo Moderator]

Hi there, I do think you need to have a chat with your GP if you have not already done so.

Glad you have found a med that partly helps with your problems. But sadly the medication you mentioned does not work for everyone with fibro xx

[fibropatient in reply to Dizzytwo]

Hi Dizzytwo,

Sorry that I didn't make it clear, but the changes spoken about have been suggested or agreed upon by my GP, and will be speaking further with her next week. Really I just felt it important to find out from other Gabapentin users their doses so I would not be too shocked if my GP suggested increasing my dosage much further. Or if she suggested something else. Thank you for you input and I would welcome more if you have it.

[Blearyeyed]

Did the GP give you a reason for coming off the AmyT?Did you get the chance to reduce your dose slowly?

Was there a reason they only gave you a week on zopiclone before stopping it?

Sometimes a quick drug change without a taper can be a jolt to the system and a new drug can take a number of weeks to have all the effects you want.

I think you do need to see the GP again and ask why these changes are being made. If there wasn't a reasonable medical reason for you being taken off the drug that works you can request to go back on to it again , even if it is at a lower dose that you and GP agree on.

Have you ever been offered chance to go on a good sleep course ?

Do you have a nightly routine to help you sleep better or could you benefit from some sleep routine advice?

If you are hoping that Garbepentin will also help with your sleep you might try taking some of your dose a few hours before you go to bed.

Garbepentin can help you to relax but it is a pain medication that can be used all day so although it is great that it is helping to relieve the Fibro pain it may not have a good effect on helping you to sleep.

[fibropatient in reply to Blearyeyed]

Hello Blearyeyed,

Many thanks for your reply. In response to this: -

I asked to come off the Amitriptyline as it was no longer working - the fibro pain was unmanageable and I was no longer able to sleep. Why it took me so long to ask for a change of drug escapes me. However when I did ask I was told to reduce the dosage weekly and be totally off the drug for 1 week before trying a new drug.

Using Zopiclone for 1 week only was to see if that would get me back into the routine of sleeping. After a time it was agreed to try again only this time to take the drug for 2 weeks. This did not work either and as I was advised that as this drug was very addictive, it was thought to not be a way forward.

It has not been suggested, by anyone, that a should go on a sleep course. Do you know about these, and do they work? If so how do I find out about them?

Yes I do have a nightly sleep routine as recommended by many professionals.

I do take the Gabapentin in the morning and 90 mins before bed. However I am wondering if I am taking a high enough dose. What do you think? When trying to establish the appropriate dose I had been advised to up it from 100mgs by another 100mgs 3 time a day until the fibro pain had gone. This I did and so by 1500mgs I asked GP if I could take the drugs just twice a day for convenience. She agreed and advised I should take 600mgs twice a day. Tomorrow I have decided to take this dosage 3x a day to see if that helps. I will be speaking to my GP again next week.

Many Thanks for your input and if you have anything else to say I would appreciate hearing from you again.

[Blearyeyed in reply to fibropatient]

In relation to sleep courses there are many types of free course across the UK and most areas have some type of CBT course that you can research and ask your GP to sign you on to. As a start there is a free online course .

If you put Sleep - Every Mind Matters- UK into Google it should take you to the right page.

If you are in NHS England you might also get access to a thing called Sleep Station for free if you fill in a quick questionnaire, but that's not available to all.

I haven't tried this myself so I am not sure how good it is.

There are also other links via the NHS or various charity sites to sleep health downloads which are usually better than APP based things.

You can take Amitriptyline when you are on Garbapentin.

It's good to actually reduce for a while , or take a break from a drug that you use for sleep if it has started to lose its effect , especially while you are trying out a new pain medication so that the sleep drug doesn't disguise how well the new drug is working.

Now you know Garbapentin is working for your pain it may actually help the Amitriptyline to have the same benefit as it did before when you take it at night again.

It might be an idea to stay on your 600 mg twice a day for now but ask the GP if you can start Amitriptyline at night starting at 50 mg then working you way back up to your last dose only if you need to.

You will probably need to give it more than a couple of weeks to see the effects as it does actually take longer for your body to adjust to each new drug change.

4-6 weeks is often a good trial.

Try a couple of weeks at 50mg with a good sleep plan then start increasing .

You could always increase the Garbapentin after a couple of weeks as your increase the AmyT dose when your body is used to having both drugs at once.

Sleep tips include ,

Keep well hydrated in the day , dehydration in the body and brain can increase agitation and stop sleep.

A vitamin and mineral supplement taken with a meal each day can help your nutrition and helps sleep.

Oddly , don't give up a nap if you want one in the afternoon when tired in the day but put on an alarm and only nap for 30 minutes to an hour.

Being overtired and not napping can make you overtired , increase body pain and stop sleep.

There is a reason for that Mediterranean Siesta.

Trying to get a regular time into your bed routine but not necessarily trying to force yourself to sleep.

Have a little 10-15 minute stroll , or sit outdoors to get some fresh air .

Have a small milky or oat based snack an hour to 90 minutes before bed. Take your night medication at the same time.

Make sure the temperature in your room is ideal for you and your bed is comfortable.

Get good curtains or blinds to stop light from the outside coming in.

Make sure that their are no distracting lights from indoors.

Arrange with those you live with that if they are still active in the house they do things quietly and turn volumes down.

Use sleep pillows to help support aching joints .

Have a warm shower or bath or some other self care activity that relaxes your muscles.

If you have neuropathy in hands and feet try massaging a good Magnesium cream or spray into them to reduce the symptoms at night.

A lavender or citronella aroma can help induce sleep if used for 15 minutes in a room that you do not sleep in but not if used for longer or in your bedroom. Longer than 15 minutes the aromatherapy can actually raise you heart rate and brain activity stopping sleep. This was noted in a piece of medical research.

Turn off all devices and the TV about an hour before you get up to bed and make sure that the blue lights of equipment aren't blinking near you.

That includes turning off noisy notification of calls or texts , these can be checked the next morning.

It's a good plan to tell family , friends and workmates that you need to help yourself to sleep and ask them not to call after a certain hour in the evening to help you.

If you have a bed partner they need to turn off too.

Tech equipment really does disturb sleep patterns so if you are going to listen to music or read a book , use old style ways to do it like a radio with no light and an actual book.

If you must use your tech for music or an alarm hide the light of it across the room , not in place by the bed you will be tempted to pick it up.

Use a gentle bedside lamp instead of the ceiling light.

Turn down your music. Do some gentle stretching then try some deep relaxing breathing in a chair or on your bed. Turn off the lights and do more deep breathing while in a comfy position on your sleep pillows.

Sleeping on your right side or back with your head and feet raised can reduce stomach acid and help breathing as well as reducing restless legs and tingling.

Try to clear your mind or imagine something restful like the sea or a large moving bubble or a favourite colour as you close your eyes.

If you still can't sleep or wake up don't force it , get up have a little stretch or a little drink of water or tea , look out of the window , breath , then settle down as you feel your body relax and try again.

Getting anxious about not sleeping will stop you sleeping even more.

Hope this is a good start for you , sleep well.

[fibropatient in reply to Blearyeyed]

Hi Blearyeyed,M any thanks for all the advise and recommendation and help some of which I already do. However I will take up some of the other recommendation. Thanks once again .

[cheylou in reply to Blearyeyed]

I would be certain that even though elavil is good for depression and sleep. It is dangerous as you are 70yrs old. so is xopiclon6 for sleep as you age. Try over the counter stuff at your drug store

[CM1EDSUK]

You have been given much good & helpful advice above. As we're all different, it can be a case of 'trial & error' to find out what meds may help. I personally can't tolerate amitriptyline as it lowers my already low blood pressure for example.

Again, as mentioned above, Gabapentin does not work for everyone, but once your GP has found what they consider your 'maintenance' dose you should try this for several weeks to see how you get on.

Now I'm mentioning this as a 'just in case.' Personally I couldn't tolerate Gabapentin either, but there's another med in the same Gaba family that 'may' help with neuropathic pain. This is Pregabalin, the precursor of Gabapentin (I think Gabapentin is often first prescribed as it's cheaper). Pregabalin can be taken at much lower dosages than Gabapentin with an equally good result in pain relief; it's also more quickly absorbed by your body so can be more effective. So, if you don't get away with Gabapentin, do ask your GP for their opinion of trying Pregabalin.

I also endorse, as mentioned by Blearyeyed, perhaps not deep breathing, but rather concentrating on breathing naturally. As a physio I used to teach this in relaxation classes, but now use this daily, & every night to aid sleep. It reduces both stress & pain. Please see:nbt.nhs.uk/sites/default/fi...

[fibropatient in reply to CM1EDSUK]

Hi cm1edsuk,Many thanks for your letter and advise. I will continue with the Gabapentin for 1 month more and if no help then I will request a change to Pregabalin. I had originally requested this drug but GP thought Gabapentin would be best to try. But as you said 'cost' will come into this. I have looked at the leaflet you suggested and will certainly have a go at the breathing technique to relax more/better as shown.

[Blev]

Hi 👋 I have had my gabapentin increased to 900mg three times a day after consultation with my doctor, also take 30mg of duloxetine morning and evening. The gabapentin increase has helped a little with the fibromyalgia and works with the duloxetine to aid sleep.

[fibropatient in reply to Blev]

Hi Blev, Thank you for the reassurance about dosage of Gabapentin. I am taking 900mgs now twice a day so its good to know that this can be increased if things don't improve.

[Earworm]

Hi FibropatientI wish I could recommend something! It's a nasty cycle 🙄 guided sleep meditation helps but I personally find when the pain and brain fog persists I struggle with sleep depression more. So no clocks ticking stay cool and try to stop worrying about the time(easier said than done)

Take care 🙏

[mel-77]

I suffer RA myself and constantly getting ct/ xray scans as it out of control .My lower back gets painful then boom! I'm collapsed on the floor, need crutches all the time I move. I take pregablin, diazepam, zopiclone, usual A-Inflamitory meds but lorazepam 2mg or clonazepam2 mg are the two meds I'd ask to try. If your health is getting worse due to sleep deprivation your gp should understand the need for a benzodiazepine. Try!

[cheylou in reply to mel-77]

benzo drugs are very dangerous. do your research!!!

[Sarahvit]

Melatonin taking it around 7:30pm. Occasionally I will think I take my night meds (including Amitriptyline 100mg) but discover the next day I forgot to take them I get sleepy go to bed and sleep with vivid dreams but feel like I was a little more restless. Without the melatonin stopping the amitriptyline cold turkey =no sleep! I take gabapentin 600mg 4 times a day. So I would suggest taking the melatonin around 7:30pm. I hope this helps. 😊❤️

[cheylou]

melatonin or sleep supyment at health store. I use Robaxacet with tyneol over the counter