Newbie in need 😢🙏

[Molliesmamma]

Hello, this is my 1st post but have been reading your posts for a few months.

I have not as yet had my fibro diagnosis- though gp says it probably is. Have had bloods done and all normal except for extremely low folate levels.

I have pain in most of my body and extremely fatigued regularly, but what is causing me a lot of distress is the pain in my neck and head. It is there all the time varying in intensity, I never sleep a full night always wake numerous times with the pains. I also have PMR , Osteoarthritis and a bulging disc in the bottom of my spine.

At present I am coming off oxycodone as is no longer working- been on it a long time. My sister takes LDN for MS and this has helped her keep well and mobile for years now, she has advised me to speak to gp about it- is anyone on this?

Going back to the neck and head pain does anyone have any advice on types of pillows which may help to sleep a bit better? I have tried a few types but would be grateful for any recommendations 🙏

[Tisme72]

First of all Painkillers aren’t a recommended treatment for Fibromyalgia, it’s quite common for them not to work long term. I got to the point where the only thing any stronger was Fentanyl, fortunately I didn’t have any, it took me nearly 2 years to get clear of them!

As regards LDN, I’m not sure if it’s recommended for Fibromyalgia so may not be available on prescription for it. I have thought about looking into it myself, but have shied away from it due to my experience with painkillers.

Finally Neck and Head pain; yes I know where you are with that very well - for me it’s tension and a feeling like ants crawling around under your scalp, it’s horrible! The best pillow will depend on whether you’re a back or side sleeper, back sleepers need a thinner pillow than side sleepers. I prefer Feather and Down ones because to an extent you can re-arrange them a bit to change the thickness. The other option is to turn the pillow on its side if you need it higher. The main thing I have learned is to not skimp on the quality of the pillow. The other thing that can help is to try and get hold of a bamboo material pillowcase, expensive but worth their weight in gold! They’re very soft and absorbent, so if you get hot and bothered (I do!) it helps!

Good luck, hope you find something that works!

[Molliesmamma in reply to Tisme72]

Thank you so much for your kind reply I was unsure if my post was being seen as had to repost with a different heading 🙈

I will definitely get bamboo pillowcase as I get extremely hot and bothered - fan off and on all day and night! Also get very cold- this seems to be a symptom inability to control temperature 😖 . I am very grateful for this group as I have lots of different things going on with my body and it seems I am definitely not alone- it is so very frustrating knowing that there really is not much that can help us

Thanks again Tisme72

[Smilesalot]

Hi sweetie 🙂🤗.Welcome😊.

I'm sorry ur suffering so much at the moment. I hope you get a break soon!

I've not taken any meds for my neck and headache as nothing has worked and I'm off the morphine. Absolutely nothing works for the numb burning meh

My whole body is one big pain. You know what I mean as does everyone on here🤗🤗🤗🤗🤗🤗🤗hugs all🤗and a hug for me lol.

My anxiety is thro the roof which I could do without🙄.

Ok time for seated exercises.

You can moan back at me anytime sweetie Dawn 🤗🤗🤗

[Smilesalot]

P.s. Tempor pillows and mattresses are awesome but expensive. My mattress is ex demo. The pillow is brand new and for me worth it 🙃 Dawn 🤗🤗🤗🙃🤗🤗

[Molliesmamma in reply to Smilesalot]

Hello Dawn I’m Helen, thank you for your message and advice- I will definitely have a look at a tempur pillow.

I know where you are coming from with anxiety I have had issues with this for a long time- panic attacks etc it’s awful 😞.

Is there a specific set of seated exercises you can recommend as I need to start being more proactive.

Thanks 🙏

[Smilesalot in reply to Molliesmamma]

Hi Helen😊,Nice to meet you sweetie 🙂.

I watch and follow Bob and Brad exercises on YouTube. They only last ten minutes or less. Depends on the day if I can do less or more ie ten minutes twice a day. The exercises are for beginners or senior s.

My pillow is a super cloud pillow.

Good luck sweetie hugs 🤗🤗🤗Dawn

[CheetieCat]

Hi, most of us could probably open a pillow shop! I'm forever chopping & changing mine. A V support pillow is a good one to have whether you use it for sitting up or sleeping they're worth having in your 'collection'

Have you tried magnesium spray/oil/lotion on your muscles? I find it really helps and use it a lot, everywhere.(neck, shoulders, legs etc..) Does absolutely nothing for some people though but always worth a try imo.

[Molliesmamma in reply to CheetieCat]

Thank you so much for your advice, I have ordered magnesium spray and a cervical contour pillow so fingers crossed 🙏

[CheetieCat in reply to Molliesmamma]

Hope it helps, let us know🤞

[Molliesmamma in reply to CheetieCat]

Hello , I have now had the pillow for a week and definitely has helped. The magnesium spray I have used a few times- unsure if helps tbh, will try to put in an every day and see what happens. Thanks for your advice 🥰

[CheetieCat in reply to Molliesmamma]

Aw that's good, glad the pillow is helping. Put plenty on one area that's really tight and painful, think they say 5 sprays but I definitely use a lot more than that but maybe it's just not going to be helpful for you 😔

[Yassytina FMA UK Volunteer]

Hello and welcome, I do have headaches and achy neck along with shoulder blades , I try not too but some days give in to some Paracetamol, , I have got 3 cool gel packs I keep in the fridge so I alternate putting them on my forehead which helps, differently see your doc and have a chat about pain relief if your current meds not working x