M.e and fibromyalgia

[Vicstar1967]

Just want to say hello and explain my conditions ..I have had M.E for over 2 years now and very recently diagnosed with fibromyalgia too ...I'm learning about pacing which will hopefully help but my problem us I have had disturbed sleep . Can anyone recommend anything to aid restful sleep please ?

[Hidden]

What is your typical routine before bed and what sleep issues do you have? e.g. falling asleep or waking up at night etc.

[Vicstar1967 in reply to Hidden]

Waking up in the night with painful and restless legs ...I do bath before bed and also use massage oils .

[Hidden in reply to Vicstar1967]

I agree with M0AL61 but I'd say try Magnesium tablets. It helps a lot.

[VintageMustard in reply to Hidden]

I agree with trying magnesium tablets. You could also look for magnesium spray. Magnesium tablets should be taken with Vit K2.

[M0AL61 Moderator Volunteer]

We would all be millionaires if we had the solution to a good night's sleep. For many of us sleep is a big problem. Either we can't get to sleep, or even if we do sleep we don't wake up feeling refreshed.

Is it pain which is disturbing your sleep, or are you just waking up for no apparent reason?

xx

[Vicstar1967 in reply to M0AL61]

Going to sleep isn't really a problem it's waking up constantly through the night with painful and restless legs ..my GP has told me there is no pain relief they can give me because nothing takes the pain away . My usual routine is bath before bed ..I use massage oils too but it doesn't make any difference .

[M0AL61 Moderator Volunteer in reply to Vicstar1967]

Have you tried magnesium oil? Some people find it good for restless legs. You could also ask your GP for quinine tablets as they also help.

An old fashioned remedy is to put a bar of soap below your bedsheet - some people say it does work!

I'm sure others here will be able to give you some hints and tips x

[Vicstar1967 in reply to M0AL61]

I did ask my gp if there was any medication and was told there wasn't but I will be returning and asking ...I'll even try the bar of soap ..thanks for you're help .

[VintageMustard in reply to Vicstar1967]

What medication have you been prescribed currently? Who diagnosed you with ME and then Fubromyalgia? I’m asking because the consultant who diagnosed me with Fibro, Prof. John Davies, now deceased, believed that these two illnesses, and CFS, are more or less the same. I have seen ME sites linking ME with CFS as in ME/CFS and I have seen hospital letters referring to me as having Fibro/CFS.

[paula1967 in reply to Vicstar1967]

I take clonazepam for my restless legs. Mention them to your doctor xx

[Danuta1 in reply to M0AL61]

Just curious but where do you put the soap and how is it meant to benefit?

[Al10 in reply to Danuta1]

I heard it works for cramp. Don't know about sleeping. You can use like a sweat cuff n tuck it in near your wrist. Or have a pocket in your Jim jams,

[M0AL61 Moderator Volunteer in reply to Danuta1]

I have no idea what is in the soap, or how it is meant to work. As far as I can remember you put it below your bottom sheet x

[Danuta1 in reply to M0AL61]

Some old fashioned remedies work really well. I will do some research and test the theory out. I’ll let you know how it goes.

[Loraril in reply to Vicstar1967]

All advices are very good, but I would go for lower back stretches as well, your restless legs and pains shows that there some muscles stiffness and if pain goes to legs, that shows lower back issues... There are plenty of stretches on YouTube, just be careful and listen to your body, don’t go to mad from early beginning, little by little muscles will get more relaxed and stretched and that should help with pain in your legs and with sleep when pain will get less... Acupressure mat helps ... it might be very painful in the beginning, it was for me... but now it’s my everyday routine...

[Roselil]

So very sorry to read this. I have had both M.E. and Fibro and IBS for so many years now. It is no fun! But there is still life.

[Marz]

Low iron can sometimrs be the cause of RLS. Have you had your Ferritin ( Stored Iron ) tested ? A result around 70 is often suggested. Not a routine test so has to be requested. Also add B12 - Folate and VitD to the tests . Obtain copies of your blood test results that are legally yours so you can monitor your own progress and check what has been missed.

Oxygen is transported around the body by sticking to iron in the blood cells. So low iron = low oxygen. 😊 Just a thought !

[Vicstar1967 in reply to Marz]

Hi Marz.

My iron levels are spot on ..I've had blood tests done for alsorts ..I had Epstein Barr virus since 2009 which wiped my immune system out completely but I'm now fully rid of that it's taken from 2009 to 2018 to get rid of it . unfortunately it's left me with M.E and fibromyalgia which I find horrendous because I've always been very active both in work and socially ..I do still work as a nursing coordinator which is very stressful in its self but I love my job ...I applied for PIP last year and had medical evidence but they turned me down ..I went to appeal and still got the KB so unfortunately I have to carry on working to earn a living ..I don't think it's fair because M.E and Fibromyalgia are recognised illnesses yet they just want us to suffer more and more .

[Marz in reply to Vicstar1967]

Yes it must be difficult for you. I too gave up an exciting career and started my own business so I could slope off in the afternoons and sleep ! You can click onto my username to read of my journey ... just a couple of minutes !

My cousin was a physiotherapist and was diagnosed back in the 60's with ME and had to stop working. When I was diagnosed with Hashimotos in 2005 - she too decided to be tested and found she had the same. So sad that testing and the understanding of test results is so poor. It seems important to rule out conditions with the correct testing - having spot on results may mean you are in range - but from my understanding it is where you are in the range that is key. eg Thyroid Testing in the NHS is just the TSH and occasionally the FT4 - rarely the FT3 - the most important and Active thyroid hormone. Also only one anti-body is tested for Hashimotos when both the TPO and the Tg anti-bodies should be checked. I presume you obtain all your results with ranges and are able to monitor things and check what has been missed.

Glad you have cleared the EBV - and I wish you well.

[Lifeisapain]

Hi Vicstar, I’m 48 now but had ME when I was 21 (and probably still have it to an extent but was completely disabled to the point of not being able to walk at one time). I was diagnosed with fibromyalgia about 20 years ago. Amongst other things, I have osteoarthritis and degenerative discs which cause a lot of pain, especially at night.

Of all the things I’ve tried over the years, and I’ve tried most, amitriptiline is the most effective medication to give me a decent stretch of sleep. It’s an old style antidepressant and at first I thought they were fobbing me off as if it was all in my head. Now I understand how it works I feel comfortable taking it and although I still wake in pain, it’s after around 7 hours deep sleep.

Worth trying x

[jools56 in reply to Lifeisapain]

I'm surprised more members haven't mentioned amitriptyline, Lifeisapain. I'm sure I wouldn't be managing fibro as well if my GP hadn't put me on it as soon as he'd done blood tests to rule out Polymyalgia (PMR). He explained that the docs had found that ami was quite useless as an antidepressant, but did help with nerve pain. I take 2 x 10mg at night which gives me good quality sleep. He went on to explain that good sleep is key; this is when the body repairs itself. Worth asking for Vicstar1967?

[Lifeisapain in reply to jools56]

I agree with you Jools56. I take 2x 10mg at night too. I used to manage with just 1 but have needed the extra one since having my hip replaced. It did make me sleepier in the morning to begin with but I’m really feeling the benefit.

It also hasn’t cause me any unwanted side effects.

[jools56 in reply to Lifeisapain]

Same here, I started on 1, then things seemed to get worse so the doc said take 2. I'm now finding I'm "shallow sleeping" again and wake at 3 am and 5.30 am, difficult to drop off again, whereas I could virtually sleep walk to the bathroom and back. I might need to ask the doc about going up to 3....but where will it end??!

[E3178]

I make my own magnesium oil and rub it into my hands 2 or 3 times a day and it seems to have helped my restless legs. I think rubbing it on your legs might work quicker though. I take one of the antihistamines that make you drowsy plus 3 or 4 drops of Cbd oil before bedtime and am now getting better sleep.

[Royalname]

I have recommended this before, I found eating a banana every evening helps (potassium). It stops my cramps/CFS. I am also taking amitriptiine, it helps with sleep xxx

[Goldstar22]

Goldstar here I have heard putting a bar of soap in your bed by your legs is supposed to help.... never tried it as I don't get restess legs....sounds weird but I would say give it a go....it can't harm you but it may do some good....hope you find something to help.....coping is not easy....take good care of yourself xx

[spiritualgirlygirl]

I'd check out MCC - Moterbikes Cosmetic Company. I just ordered some items from them. I read a comment under a fibro post about them and after reading the reviews for sleep, pain etc decided to order some things. They are a husband/wife team that's developed all natural products and boy do they sound great! Can't wait for mine to come. They're based out of the U.K. Just a suggestion. I don't have painful restless leg, occasionally restless leg but awful sleep. Please go check out their page, it sounds like they're really helping people. The owner herself has Fibro.

[Vicstar1967 in reply to spiritualgirlygirl]

Hi could you send me the link please .

[Lindseyswann]

Weighted blankets,hot water bottle, pregablin,naproxen,ametryptelin ,resting in bed for a period to clear my mind,warm bath with badedas bubble bath in.

[Vicstar1967]

I can't use weighted blankets Hun I'm very sensitive to touch plus with the menopause and hot sweats etc a hot water bottle is out of the question but thankyou so much for your input ..much appreciated 😊

[Babyjessica in reply to Vicstar1967]

Hi Vicstar1967 - I find heat a good way to ease my pain - I have lots of microwave wheat bags, large hot water bottles and electric blankets as sometimes I need to lie on the electric blanket whilst my husband covers me in the other bits 🤣

I know what you mean about hot flushes as I also have a neurological condition which means I don’t regulate my temperature so I couldn’t cope with the heat treatments either ! However, cold/ice treatment just doesn’t cut it for me ! Soooo. ..... now when I’m in so much pain I just need to cover myself in heated things, I just get my hubby to put a standing fan next to me & put it on full ! My body gets the heat but I don’t feel overheated or sweaty because of the fan !

Worth a try for you ?

[bluefall in reply to Babyjessica]

I do this too - heated fan for targeted pain relief whilst also using a cold fan and ice packs for hot flushes lol. The things we need to do!

[tiredofmoaning]

Tonic water is great for stopping night cramps.

[jayneangel]

I find an Epsom salt bath does help, also use bentonite clay and put essential oil in too, lavender or frankincense are good. Peppermint can help with pain but is also a bit stimulating so depends how easy it is for you to get off to sleep. I light candles and put on meditation music too, not sure how much that helps me to stay asleep, but it does help me to relax which in turn helps the pain... I've not found any conventional medicine that helps

[Loraril in reply to jayneangel]

Hi.. just recently I read a book “What your doctor never will tell obout fibromyalgia “ or something like that.. and the author says, that any kind of oils teas etc what is made from plants are no good for people with fibro.. he says that our kidneys then has to eliminate salicylate from our body, which is found in all plants.. and then they (kidneys) don’t have time/power to eliminate phosphate which is cause of painful muscles, tendons, joints, skin ect... he even writes that there is a cure.. but one thing is clear our body doesn’t function properly cos we are putting too much in/on it...

[geordieonline]

My pain and levels of pain vary from day to day. I've tried many of the above mentioned, as well as propping legs with pillow, some can help, but are never a permanent fix.

I dislike taking meds, but find the only thing that helps me when the pain is really bad, is diazepam (Low doze) and not all the time.

I think it's just trial and error in finding what works for you. We should all form a group called the night walkers lol.

[HetHeru]

Amitriptyline is helping a lot and i have not sleep this good in years but i fear my body will get use too the meds and might stop working.

[robpw in reply to HetHeru]

It’s does and if you get disturbed then you end up in a moggy trance for a bit awake but really unable to function and etc .. or that’s my experience do I feel better in the morning if I’m honest not really sure

[Royalscot07]

Drink less tea and coffee as I found it helped me greatly drink more filtered water and try and eat some fruits and berries each day caffeine keeps you awake

[HetHeru in reply to Royalscot07]

excellent advice.

[Royalscot07 in reply to HetHeru]

you are welcome ,you will also find as the weeks go by a change in your body weight as well as it does help with weight control as i have also found out to my advantage the drinking of filtered water and also it is very good for your kidneys and other organs ,glad i was of help for you Eoin