Help

[jusydoll]

Hi I have been diagnosed 2 days ago with fibromyalgia , my doc has put me on 1000 mg of anti inflammatory per day , not much pain relief as yet still waking up same time every nite , and hav been advised to take liquid magnesium , any1 no how to get a good sleep without a sedative?

[Hazel_Angelstar Administrator FMA UK Staff]

hi Jusydoll

Welcome to the FMAUK Community !

I am sure you'll find this community a helpful and supportive place to be ! There's lots of posts to read and many lovely members to talk to about Fibro.

You may wish to check out the main FMA UK website which has a wealth of information about Fibromyalgia which may be of help to you , including a Patient Booklet.

fmauk.org

As a newbie, please can I mention that members prefer to answer posts that are locked to this community only. If you wish to do this, here's a link that explains how to do it;

healthunlocked.com/fibromya...

Anti-inflammatory medications are not generally recommended for fibromyalgia as their is no evidence of inflammation . If sleep is a major issue - many people find that amitryptilene helps with sleep - as well as having muscle relaxant/pain relief benefits.

hazel x

[Hidden]

That's the million dollar question. A lot of us here struggle with getting a good night sleep.

For me a lot of medications give me bad insomnia (can't take cocodamol, diazepam and tramadol anytime after 3pm otherwise will be wide awake until 5am)

But amitriptaline and pregabalin help me to sleep through most nights. For me the hardest part is falling asleep, once I'm asleep I mostly sleep through

Hope you sleep well tonight

[jusydoll in reply to Hidden]

Am up all night goin to the toilet , can fall asleep no problem , then when it’s time to get up am totally exhausted

[Hidden in reply to jusydoll]

Have you tried switching to decaf tea and coffee? And no tea/ coffee at all after 6 pm, that might help.

I'm sleeping better with an electric blanket on low all night, magnesium oil rubbed into my feet. I also have a sleep App on my phone, you mix 3 sounds from dozens and it switches off after a while.

There's a piece of music called Weightless by Cafe del Mar ---google it and you'll see how it's written.

[Hidden]

Sleep problems are for everyone so different. It takes me hours to fall asleep, once I'm finally asleep I will sleep for 10 hours or more but still exhausted too when I wake up. It might help you to ask your doctor for a low dose of amitriptaline to help you sleep trough the night. It helps a lot of people with Fibromyalgia

[jusydoll in reply to Hidden]

Thank u , but don’t want to take any more pills but will research it

[KnackeredKaty in reply to jusydoll]

Chamomile tea is good to calm you before bed and help you sleep.

[Hidden]

Totally understand, not keen about a lot of pills too, but sleep is my nr 1 priority as I don't have any quality of life if I don't sleep. So rather take something for my sleep instead of taking anything for my pain or other problems.

Is there anything that the doctor can do to limit the many loo visits?

[jusydoll in reply to Hidden]

All the doc advised was to stop drinking after 7 at nite , tried it no use at all 😩

[marcusanthony24]

Although it has been mentioned in a post that fibromyalgia doesn't cause inflammation I am convinced I have it and I'm in pain every day and I take turmeric tablets which help a great deal.

[Darkfairy]

I find meditation a massive help for my sleep and my ability to cope with pain along side things like crystals and aromatherapy. My body struggles with most meds or they just don't work so I've had no choice but use alternative therapies. Theres a great meditation app i use that I'd be happy to share with ppl but not sure if its against rules. Hope u find something that helps u soon x

[ruthmel1]

Hi and welcome. Sorry you have Fibro. Anti-Inflammatories dont work for Fibro as theres no inflammation. The drugs most of us take seem to be Pre-Gabilin, Duloxetine and Opiates. Ask to be referred to a pain clinic. I take oral magnesium with MAlic acid.The malic acid is important in the mix. Heat helps me. I have very hot baths with essential oils to relax such as lavender, Rose, I put MAgnesium salts in the bath.You can buy huge bags on e-bay.

I have a marvelous, but expensive device called an Alpha Stim-Microcurrent machine which is similar to TENS but tons better.

HAve a google and research CBD oil for pain.I'm using it and it really helps. Its perfectly legal in the UK and isnt cannabis as we know it.

Sleep disorders are so common in Fibro. I do all of the above-hot bath at 3am, Alpha Stim machine. If you wake up dont lie in bed tossing and turning and getting wound up. Get up, make a brew, watch TV until you feel sleepy again.

I also listen to Audible story tapes as I nod off, or meditation pod casts help.

[Mdaisy in reply to ruthmel1]

You're right Fibromyalgia is not an inflammatory condition however the current research is looking at some possible Neurological inflammation although research continues.....

I wondered if you had seen this, it's the recommended European League Against Rheumatism (EULAR) recommendations for Fibromyalgia;

healthunlocked.com/fibromya...

I just wanted to add strong opioids are not recommended for long term use in Fibromyalgia due to risks of addiction, side effects and efficacy appears to be poor possibility due to lack of opioid receptors that some research papers have cited. However, many people do seem to go up the analgesia ladder and after all other treatments exhausted end up on these medications. Many members say the dosage needs to be increased regularly to have the same effect.

Thank You for sharing other helpful coping mechanisms

Emma

[ruthmel1 in reply to Mdaisy]

Hi Emma. I havnt seen that thanks. I recently heard so much about how supposedly wonderful The Fibro Guy was, a friend of mine has made amazing strides, that I bought his GET dvd from FMAUk. I didnt get passed the warm up! Its incredibly intense. Also as I have M.E GET is the worst thing you can do for it!!! needless to say most of January and all of Feb clapped out in bed!!!

I went up the opioid ladder until I was on 160mg of Morphine a day!! Since I learnt about CBD oil I've been coming off the Morphine with my G.P's support and replacing it with the CBD oil with good results so far .I'm only down 20mg but I'm reducing by 10mg every fortnight because of the awful withdrawal symptoms. I have a long road ahead.Then its the Lyrica and Duloxetine to reduce.

[Mdaisy in reply to ruthmel1]

Well Done you!

For getting the DVD and finding something else that helps so you can reduce medications that may not be good long term but have an alternative for the pain. I hope they make option available to us and don't reduce medications for people that need the pain relief, think any reduction program would need to be individualised and the patient given access to other options not left floundering hopefully.

It sounds like your making waves to get it more under control and with each day a small amount with no Push & Crash cycle you should get there. Don't worry that you haven't done certain parts of the DVD, it will come slowly does it pacing etc. Also be careful with ME as many people say graded exercise therapy can make it worse so do listen to your body.

Sending some extra strength and energy for you

Emma

[Lynn22auckley in reply to ruthmel1]

Can I ask cbd oil is please, sorry I’m another newbie

[jusydoll in reply to Lynn22auckley]

It’s cannibas oil , haven’t tried it yet but suppose to be great for pain relief, it’s legal u can get it from health shops

[ruthmel1 in reply to Lynn22auckley]

CBD oil is Cannabinoid oil. Its all explained in this link.

projectcbd.org/about/what-cbd

[Crackerjack4u]

I have A LOT of pain related medical issues, in addition to my fibromyalgia. I am new to the forum, but certainly not new to dealing with pain. I also do have an implanted pain pump, take oral narcotics, muscle relaxers, antidepressants, and antianxiety medications, use topical muscle cream, etc. for my issues, but have learned several coping mechanisms that have also helped me throughout the years. Some of the non medicine things I have found to help with sleep is taking warm long soaking bath before going to bed, ensuring I stay warm at night because the colder I get the worse the pain gets. I also like sleeping with a sleep mask on as it helps me fall asleep easier, and stay asleep longer because it tends to help shut my mind down, so I'm not laying there with my eyes wide open thinking about things, and dwelling on my pain all night long. I have found that pillows are my best friends. Because of my medical issues I can only sleep in 1 position which is on my left side only, so I have 2 pillows under my head, a 3rd pillow Ving off coming down under the front of my neck and chin, I have another pillow behind my back, another pillow under the front of my stomach, and I then have 4 pillows that are tied up in a flat sheet that I use like a wedge to prop my swollen legs on, and place between my legs to help support my hips, and help take pressure off my back. Another thing I do which will probably sound crazy, but it seems to help, is I sit at night before going to bed, and chew a mouth full of chewing gum while just sitting in a quiet dark room, reading on the computer (for some reason chewing the chewing gum helps keep my mind off the pain as much, this tends to help relax my body and mind, and acts for me almost like a form of meditation.

[Sarahvit]

Make sure your doctor monitors your kidney functions. I was on Celebrex ?mg every morning for probably over 10yrs (can’t remember starting it just know it was a long time being on it). Well back in 2016 my doctor said my kidney function was low and ask me to stop taking. Repeat blood test showed it was still off and asked me to increase my water intake....fast forward...to yesterday my kidney function test is still off but went from 48 to 52 above 60-200 is normal. All this didn’t click until I was cleaning out my purse and saw the patient summery with the diagnosis of kidney failure listed. I asked my doctor about it and she said it was chronic renal deficiency or chronic kidney disease. I would ask her about trying Ultram for pain it doesn’t effect the kidney. Have you tried melatonin? That helps me. I tried it back in the 90’s but it didn’t help but now it does. I didn’t mean to overwhelm you with the kidney thing. I don’t know 🤷🏼‍♀️ if this is just another fibromyalgia thing or something else.