My first post

[JamesWarnes]

I've had chronic pain for over 20 years was diagnosed 2.5 years ago with Fibromyalgia but although I knew it was correct I just keep fighting. Back this week and he made it very clear that having had so many MRI scans and seen some many consultants and had so much treatment including CBT that I have to accept the diagnosis and work to manage the pain. But that's increasingly hard to do. Sleep dramatically affected and of late I'm finding it hard to focus on anything else, hence reaching out in here. Despite being a member don't a while j hand never posted until now.

[cespinosa]

Hi jamesWarnes,iv been a member for awhile to but don't post much I try to reply alot. This forum has been the best help for me to get a handle on my fibro. Fatigue and insomnia are a big problem for me. How can you be exhausted all day and wide awake at night??? I take meds for pain and they help a little I don't want to try sleeping meds. I haven't found anything yet for fatigue😲 I hope you had some sleep💤💤💤💤 take care. Chris

[JamesWarnes in reply to cespinosa]

Thanks for the reply unfortunately will sleep apneoa they won't give you anything to help you sleep cause I'm at risk anyway of a stroke or heart attack. Vicious circle with little or no.light at the end if the tunnel 😯

[Manolita7Z7 in reply to JamesWarnes]

Hi James it sounds like you’re talking about me! I find heat helps my pain a little but it’s constant have you tried lavender to help you sleep

[JamesWarnes in reply to Manolita7Z7]

We got a big Bette Ocean bath and lying in that helps plus hot water bottles if I'm sitting watching TV. Have lavender on my pillow every night using a stuff called This Works which is really good as the lavender smell does help get me off to sleep. Positioning the duvet between my knees and the pillow tucked under my neck also helps ☺

[Drm532]

Hi James

Sounds like your speaking on my behalf lol...it's can be a very hard life when some of us have to face this never ending story and deal with this f....d up life that we have been dealt with James and we all try different ways of helping with the pain.

All I can say is no matter how bad your/Mine pain is there is and always be others suffering more.

Take care James

Dave

[JamesWarnes in reply to Drm532]

Thanks Dave I think that's why I've not posted before because I didn't think my pain was bad enough but the last couple of months have been just awful and I suppose I'm looking for ways to deal with it. Writing it down and talking to others seems a good way. James

[Winniepooh1976 in reply to JamesWarnes]

Hi I have suffered chronic pain for over ten years I could not cope without my Amitriptyline and the support i have found on here. Sometimes knowing others are in the same or similar position to you helps. I also found relaxation in a bath helps me as does breathing deeply and slowly and imagining somewhere that is beautiful or that you have visited. I know tapes are available with techniques like I use hope this helps.

[Fra22-57]

I read alot of posts but don't answer much but try and answer some.There seems to be a huge amount of people with this condition. WHY? I have few auto immune conditions aswell as this. I get so mixed up which ailment is from which.I have tried amytriptoline for sleep which you can't and didn't like as just took edge off pain n still woke but couldn't wake up each time to get out of bed.I take Pregabalin for pain which can be a nightmare in itself.Have you had your thyroid, B12, vit D and ferratin tested? extensively n not the normal ones GPS do..I did mine privately.

[JamesWarnes in reply to Fra22-57]

Not had my thyroid tested but do take supplements for B12 and vitamin D. You're right about pregablin and the others in the family of drugs helped the pain a little but too many side effects not least didn't really help me get to sleep but was so dozy in the mornings and couldn't function.

[drjohno]

Hi James my doctor recently prescribe me with amitriptyline 1 to 2 tabs at night, about 3 hours before bed. This has helped me a lot and i sleep quite well now but do feel a bit drowsy in the morning but i can live with that. i hope this is of some help and wish you all the best regards John

[JamesWarnes]

Thanks John I was previously in Pregablin Amitriptyline and fluoxetine on and off for many years and although did help lesson the pain a little it didn't help me get to sleep but kept me feeling drowsy and not able to wake in the morning. Also played havoc with my sex life and concentration so work suffered. Trying to get the right balance between the pain and living some sort of normal life is a nightmare.

[Winniepooh1976 in reply to JamesWarnes]

I agree totally i take morphine and 50mg Amitriptyline and Tramodol as well as using tens and heat patches. I am waiting to see the pain clinic pharmacist. I HATE the side effects mainly feeling shattered most of the time. I think most of not all pain sufferers wish they had a balance between living a normal life and dealing with pain.

[JamesWarnes in reply to Winniepooh1976]

Wow that sounds just like me 10 years ago as I was on exactly the same! Forgotten about the tens machines still have them but not used either in some time, perhaps I should. Actually found they helped a lot until it stopped and the pain just flooded back. I do wish you well and thank you for replying ☺

[Winniepooh1976 in reply to JamesWarnes]

I find when all else fails and I am climbing the wall the TENS works I don't know if it just a distraction but it works! I know how you feel though it is hard to stay optimistic and keep trying but I think you should definitely try the TENS again. I hope that you get better days using it.

[Judithdalston]

Hi, I agree with Fra22-57, might be worth private testing for thyroid, and Vitamin/mineral levels ( D3, B12, folate, ferritin). Medichecks can do this ( google them) , they have a 20% off deal until midnight tonight..look at the thyroid with 11 blood tests c £79. I know it's a lot of money but it might flag up something that you could actually be proactive about. Fibromyalgia is a bummer diagnosis but if you go down the thyroid/ vitamin etc route you can take some control back! Look at sister forum on healthunlocked by Thyroid Uk- very different site from the fibromyalgia.one. I have both diagnoses and diabetic. Try amitriptyline for sleep, helps me most nights.

[JamesWarnes in reply to Judithdalston]

It's certainly worth looking in to and let's be honest anything that can ease the pain even a little and even for a short time is worth pursuing 🙂

[YASMINTINA FMA UK Volunteer]

Hi James and welcome , always glad to see new members joining I can see you have already had some very good replies from members already. I hope you will find the forum very helpful and out of all the things I’ve visited on the net this is the best forum around. Yes James I agree acceptance is very hard something I’m finding difficult still. You say you have sleep apnea too ??? Snap had my machine and full face mask 4 years now not the easiest way to sleep is it. Was telling members my children call me darth Vader big horrors, I was told I have a small palate that is why I’ve got it. It does seem more and more people I chat too seem to have fibro /cfs /sleep apnea these days . If you would like to lock your future posts it normally generates more replies from members as it will be seen by only our forum members and not out there to the rest of the internet engines .

[JamesWarnes]

Thank you so much for your advice and I will look to see how I lock my posts. It is strange the more I read the more it seems there is a link between fibromyalgia and sleep apneoa, perhaps it's the comfort eating 😕

[Eleanortoo]

Did you find the CBT helped James? I suspect the way forwards is to stop fighting the diagnosis and look for ways to live with it. I appreciate that is easier than it sounds but some form of mindfulness /meditation might be helpful. I too have sleep apnea and an underactive thyroid.Are you using a CPAP machine and if you are is the pressure at the right level ?

I hope this bad patch soon eases for you.

Best wishes

Eleanor

[JamesWarnes in reply to Eleanortoo]

Thanks Eleanor for your reply. Yes using a CPAP and have been for 8 years of so but must admit I don't use it enough and find I rarely go more than a few hours before ripping it off my face. It's an auto CPAP so pressure should be ok.

In terms of CBT it did help to an extent in that when I get stressed my pain is magnified and there were a number of situations, not least driving and food hygiene that caused me increased stress. The councillor helped me address the driving issues and now I drive more curtiously and I am able to eat at functions and meals with others without worrying too much about who's had their hands or chop sticks in the bowl 😃

[Eleanortoo in reply to JamesWarnes]

It took me a while to come to terms that the CPAP machine is my friend. If you can use it regularly, it might help with the tiredness. Having said that, I use mine every night, all night and feel wiped out today. It's still better than waking with a closed throat and struggling to swallow.