Hi

[Tiny09]

Does anyone have issues sleeping due to fibro am finding it really hard to sleep, and when i do i get a few hrs and back awake again.

[Hidden]

Hi

I'm sorry you are struggling to sleep. I certainly know what it's like. I have an hour or less sleep per night due to pain as I have many conditions including fibro. What pain relief are you on?

Take care and stay safe Lynne

[Tiny09 in reply to Hidden]

No pain meds as nothing works 4 me ive tried everything frm co-codamal to tramodol nothing works,but pain management have sent a letter to my gp so hopefully they can help, sick of not sleeping

[Hidden in reply to Tiny09]

Yes, I know what you mean. I did have injections which didn't work, they are going to try them again and see what happens. My pain meds just about take the edge off my pain otherwise I wouldn't be able to get out of bed in a morning. I really hope your GP can help you. Take care and stay safe Lynne

[Tiny09 in reply to Hidden]

Pain management said about the injection bit coz its nt just in 1 spot she said it wouldn't work 4 me

[Hidden in reply to Tiny09]

Mine isn't just in one spot, maybe that's why it didn't work. I will see how I get on next time. Hope you manage a little bit of sleep tonight. I'm here if you need me day or night. Take care and stay safe Lynne

[Tiny09 in reply to Hidden]

Am hoping so am absolutely knackered but my skin is red hot at the same time, i carnt get a cool bath as my nerves react badly to it and a hot bath its driving me insane atm

[Hidden in reply to Tiny09]

Hi.

Is there anything they can give you for your skin? Have you been referred to a dermatologist? I really hope you sleep tonight. It's horrible not sleeping. Thinking of you Lynne

[Tiny09 in reply to Hidden]

Only way i can describe it is lyk my muscles r burning frm and the inside out n its making my skin hot, then of course am sweating then

[Hidden in reply to Tiny09]

This must be horrible for you. Is there nothing the Dr can give you? Xxxx

[Tiny09 in reply to Hidden]

Its driving me insane i just want 1 decent nights sleep, i won't know until next wed now as i was waiting 4 them to receive a letter frm pain management. So am hoping he can until then i guess ive gotta battle on

[Hidden in reply to Tiny09]

Mine has been going on for at least 6 years and I just seem to get one thing after another. I do get down but I usually give myself a talking to, there are plenty who are worse than me!! I do have at least 15 conditions!! Xx

[Tiny09 in reply to Hidden]

Pain management think anxiety could be contributing to my pain, i just dnt lyk the way i feel atm, its got me down aswell but lyk u said there is people worse of than me, just wish i knew wot to do about feeling this way

[Hidden in reply to Tiny09]

Hi

I know what you mean. I think lack of sleep just makes you feel horrendous. I'm exhausted all the time. Xxxx

[Tiny09 in reply to Hidden]

Yeah but ive gotta keep going still have my son to raise

[Hidden in reply to Tiny09]

How old is your son? Xxxx

[Tiny09 in reply to Hidden]

10 will be 11 this year

[Hidden in reply to Tiny09]

Both ours are grown up, Ian lives with his girlfriend Chantelle in Cambridge as they went to Anglia Ruskin university, different year group, Ian is shielding because he has Crohn's disease, diagnosed when he was 12. Mike lives at home, his girlfriend Alannah lives in Bingley Bradford. They met at Leeds university. We are very proud of them both. They are lovely girls. Dave, my hubby, has been working all through as he is a handyman in a prison. We can't wait to all get together again. I've been shielding as well. Myself and Ian can't go very far until August and then not too far. We are going to meet up mid- end of August, we just want to see that things don't go belly up . Thank goodness for zoom and quiz nights 🤣

It must have been so hard during lockdown for you but it would have been much harder if your son was a toddler, though I know he obviously still needs looking after. He will start to become independent before you know it.

Have you got anyone you can call on so that you could perhaps go and have a lie down in the afternoon.

Sorry, I've gone off on a tangent again!!

Please take care and stay safe Lynne xx

[Rabs550 in reply to Hidden]

Good morning I just wanted to know wat meds ur on and which injection do you have please if you know the name please write me the name down thsnk you xx ♥️

[Hidden in reply to Rabs550]

Hi

Is it my pain meds you want to know or all of my meds?

[Rabs550 in reply to Hidden]

Hello again well the pain meds and the injection what are they for do hsve fibromalgiya or also other cronic problems? ♥️

[Rabs550 in reply to Hidden]

Hi how are you I just wanted to know what pain meds are you on and take xx

[Hidden in reply to Rabs550]

Hi

How are you feeling tonight?

My pain meds are nortriptyline,duloxetine, codeine, oramorph, zomorph and sometimes paracetamol;;

The conditions I have are :-

Shin splints,

Oa in knees

Sciatica

Degeneration of the facet joint

Spondylitis

IBS

Diverticulitis

Depression

Gastritis

Fibromyalgia

Compensated cirrhosis ( fatty liver diagnosed May 2016 caused by meds from my drs over the years, non alcoholic steatohepitis diagnosed in November 2016 after having a biopsy and now it has progressed to compensated cirrhosis diagnosed in February after a fibroscan. My liver is so enlarged it stretches the capsule around it which causes the pain)

Raised bile acids, to do with liver. I will end up needing a transplant at some point!!

Costochondritis

Diabetes type 2

Under active thyroid

Top of spine , bottom of neck very sore, yet to be diagnosed.

Don't know the condition but I am really struggling to empty my bladder so I've got to have dilatation of the urethra done, had it done 4 years ago

My injections are for my stomach, very sore before, during and after eating(gastro pain management) They didn't work this time, I'm waiting to see what they will do next.

My other injections from in health pain management, are for my lower back, these did not work but my consultant wants to try again before they decide what to do next. He said I'm a complicated case!! I could have told him that!!

I'm rough at the moment. One hour or less sleep per night due to pain . Got to keep smiling 😊, no point moping around as it won't change anything.

Anyway, bye for now.

Take care and stay safe Lynne

[Tiny09 in reply to Hidden]

Oh wow oldham am so so sorry your suffering with loads of different issues, i do wonder if I'd be ok taking some zapain to try ease some pain tonite

[Hidden in reply to Tiny09]

Thank you. I've never heard of zapain, is it from your GP ?

[Tiny09 in reply to Hidden]

Yeah Oldham i was took of them as they simply dnt work, but am so fed up of this pain its driving me insane plus am not sleeping well either, not a good combo

[Hidden in reply to Tiny09]

Hi

Could you get in touch with your GP first thing for an appointment or do you have patient access where you can make your own appointment? I can tell I'm going to be awake all night as per usual. It's just horrendous, the pain is awful xxxx

[Tiny09 in reply to Hidden]

Sadly my gp aint being seing ppl simce march all they r doing is talking to ppl over the phone

[Hidden in reply to Tiny09]

Hi.

Would he see you if you had a telephone consultation first and you would both be wearing a mask. Could you go and see out of hours GP this evening? I think our out of hours sees people after surgery has closed until they are open the next morning. Did you get any sleep? I didn't👎🌈🌻🏵️xxxx

[Tiny09 in reply to Hidden]

Yeah but means dragging my son with me, i managed 6 hrs last nite, but ive been told weighted blankets r meant to be really really gud

[Rabs550 in reply to Hidden]

Sorry for the late reply poor you I thought I was bad but I guess there's alot of people going though simlar problems so do you think any of the medication you take helps or not and have you tried anything else for it o Ibs and ur pain ❤️

[Hidden in reply to Rabs550]

Hi

I'm in pain 24/7 , if I didn't take the meds I would not be able to get out of bed in a morning so I suppose they do work a little . I did try me everyone , buscupan and mebeverine but these were no use at all. How are you feeling today,? Lynne

[Rabs550 in reply to Hidden]

Hi I'm not to good today been a few weeks constant pain it's so hard as you said the worst one is getting out of bed since 2017 everything changed for me its so hard I try my best and like you I'm on so much tablets they help a little but no cure I guess normally I get 2 3 good days but for the past 8 weeks in bed most of the time it's sad when you want to get out but you can't u hope u stárt feeling a little better I knw you won't fully recover its to hard to recover😌did you say you get Ibs and servere constipation

[Hidden in reply to Rabs550]

I do have IBS, it goes from being constipated to the runs!!! Both are bad in their own way!! Like you I have many conditions which is hard but having a great support network of family and friends and all of you on here which really help me . If you are getting stressed there is always someone on here who can help. I'm awake all night apart from the odd night where I might get more than an hour, this is due to exhaustion. Have you got someone who help you? Take care and stay safe Lynne

[birkie]

Hi Tiny09

I've had ME/fibro since 2005...my main problems were pain fatigue and lack of sleep I've been on several types of medication and I can say none have really worked for me I'm now on duloxetine 40mg 3 times a day they are gastro resistant due to me having gut issues and unfortunately having to have my thyroid removed in May last year.

Like you I jump when water hits me I have a shower and it can feel like razor blades are hitting you, also I can't bare anyone hugging me or squeezing my muscles it even hurts so much when having a blood pressure cuff put on, in all my years gps and consultants have failed to help as for sleep I've tried every thing from sleeping pills to lavender pillows.. As I now don't work I have just give in to it and stopped worrying about sleep if I don't sleep at night i may sleep through the day I figure I'll sleep when I need it but my fatigue as not gone away and I'm still very tired everyday I think that's just what fibro does to us suffers it stinks I know but until the NHS start to understand this condition it will remain like this.. I think we're sent to the wrong consultants and a lot of gp/consultants have no idea about ME/fibro.. I do hope you manage to get some help you will probably need to bug your gp until you get somewhere and I know it's the last thing we feel like doing when we're physically wrecked due to pain and lack of good sleep..

Good luck

Best wishes

Karen

[Rabs550 in reply to birkie]

Hi and how are you feeling today??, I wanted to know which other medicines are you taking for ur fibro and do you suffer from any other pain

[birkie in reply to Rabs550]

Hi Rabs550

I'm on duloxetine 40mg 3 tablets per day.. But I must stress they don't do much for my pain their also gastro resistance because I have colitis and ibs, I also have osteoarthritis and rhumertoid to.. And now have no thyroid due to toxicity because it took over 2 years to diagnose and now have graves I'm on T3 only and struggling, my last bloods showed a raised calcium level and a high parathyroid level and a very low T 4 level.. I'm in pain 24/7 I try my best everyday to cope with it this requires me to have long spells of resting after doing anything one thing I hate about M/E fibro.. The other is the pain not counting the athuritic pain so the pain seems to melt in to one giving a higher pain but no painkillers have actually worked.. 😩😩

[birkie]

Hi again tiny09

Just a thought have you ever had your thyroid levels checked just when you mentioned sweating and burning that's what I was like and my gp put it down to my ongoing conditions ME/fibro and the menupause upshot my thiyroid had gone overactive its just I thought for you to consider

Karen♥️

[Tiny09 in reply to birkie]

I've had loads of tests including thyroid it came back as borderline 2s,ive had protein, creatine, infection, inflammation marks, full bloody count n nothing is showing up at all, even had an mri and xray, its frustrating

[birkie in reply to Tiny09]

Hi Tiny09

You should get your thyroid results and check them and the reason I'm saying this is because my gp told me my thyroid levels were OK or in range but not everyone feels well being in range it took over 2 years for me to get my surgery to take more bloods eventually I got diagnosed with hyperthyroidism one blood test is not enough, in my case I was attacking my thiyroid making it go overactive it can be hard to catch on one blood test.. Look out for shaking hands or feeling jittery that's another symptom of a thyroid problem like you I had mri/brain scan, blood tests everything and they said nothing is showing up well they were wrong.. I lost my thyroid due to my gp being lazy I could have saved the NHS a lot of money with all the other tests they put me through if only my gp had done thyroid bloods every six weeks he might have caught it and saved my thyroid.. So done always belive your bloods are OK challenge them.. Its a fight I know I've been their and still am now my parathyroid glands have gone overactive so round 2 for me..

♥️

[Tiny09]

Yipeee finally got a diagnosis frm my gp i have fibro lyk i thought, so happy to have a proper diagnos

[Rabs550]

Hi tiny how are you feeling today I just wanted to know how are you coping with it sleep and ur fibro pain. And what are you taking

[Tiny09]

Hi rabs550 am. Ok ty doctor has put me on amitriptyline as no pain meds worked for me at all, n ive invested in a weighted blanket, which is helping me sleep alot better x