Sorry ive not been about tht much but am properly struggling atm physically, every day seems a battle with fibromyalgia, it put me in hospital 2 weeks ago due to my doctor thinking I had a blood clot on my lung, as the pain is all in my back but was right under my ribs, now it seems to be everywhere in my back. Carnt seem to catch a break from pain. Sorry 4 the rant
Give me a break. : Sorry ive not been... - Fibromyalgia Acti...
Give me a break.
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Tiny09
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50 Replies
•
Hi
I'm so sorry you are in so much pain.
Have you read my posts about cbg, CBD, vitamin d and magnesium? As you know I was getting an hour or less sleep per night due to pain. Anyway, our son persuaded me to try cbg which I did and I actually slept, couldn't believe it!! Mike said it sort of detaches you from the pain. Thursday and Friday were a bit hit and miss. Mike then said what about adding CBD as t. Jerry very kindly advised me to have magnesium and vitamin d. Well , took everything but vitamin d on the Saturday as we couldn't get it until Sunday but I slept 😊 Sunday and Monday I've had roughly 7-8 hours!! It's been over 10 years since I slept properly. I've had an hour or less sleep per night for over 10 years. So you can imagine my shock!! I was very sceptical. I do take my other meds as well but it might be worth a try, you've got nothing to lose.
Take care and stay safe Lynne
Mary-intussuception• in reply to
It's ok to rant, no apologies needed x
Sorry your in so much pain just now.
🌹🌹🌹🌹🌹🌹🌹
xx
It put me in hospital a few weeks ago with my gp thinking i had a blood clot on my lung, pains all in my back aswell now, am finding am nt even going out much these days, had to stop taking my kid to school as i carnt handle bus vibrations anymore. Just so fed up
Tiny09• in reply to
I sleep ok due to amitriptyline my issue is when i wake up am sore as hell n nothing helps the pain at all
• in reply toTiny09
Can you take amitriptyline during the day? Xxxx
Tiny09• in reply to
No it says night time n to take zapain during the day it dnt even touch the pain, ive tried everything frm co-codamal to tramodol nothing works
• in reply toTiny09
I really feel for you.
Until I took these new meds my pain was 24/7,I get a break at night now. I didn't think this would happen. I'm in pain all day . I'm keeping my 🤞🤞🤞🤞 for tonight as I'm in a lot of pain now. My son said it sort of detaches you from your pain.
Thinking of you
Lynne
Tiny09• in reply to
Its just horrible its all in my back to
• in reply toTiny09
I know what you mean. I'm pleased you manage to sleep at night . When I was on amitriptyline my Dr prescribed it so I could take it during the day as well. Yes, my fibro is all over. My back really hurts because I have other conditions which affect my back.
Thinking of you
Take care and stay safe Lynne
Jacjai• in reply to
I take amitriptyline 10mg in the morning when I get up with 50mg tramadol, it's helps me to start the day, I've tried taking amitriptyline at night 2 hours before bed, I would be wide awake 4 hours later for an hour before going to sleep again.
Am. On 35mg at nite dnt help with pain but helps me sleep only time am not in pain tbh its all in my back aswell, feels lyk ive got lumps behind my back n there is nothing there
I've been struggling over 4 years and it's been trial and error with medications, it's the side effect that usually makes me try something different, sometimes I get more frustrated about the medication rather than my fibromyalgia.
My pain is always on my neck, shoulders and back, recently my left arm has been given me so much pain I have no strength and I'm unable to use it much and keeping up at night.
I've stopped taking pregabalin since 5 months as I was not getting much pain relief, I weaned myself from 600mg a day to nothing in 5 months, worse experience of my life, I felt like a drugie coming off heroin, awful sweat, pain like flareups as you would have the flue, I would never take such medications again, I'm going to stick to 10mg amitriptyline for now if I up the dose I have side effects like bloating, constipation, feeling always full and losing my appetite.
• in reply toJacjai
I'm just wondering if your Dr would give you something else? Love and hugs Lynne xxxx ❤️💜
Tiny09• in reply to
Ive just come of phone with pain management and they have said because ive tried everything the docs can offer me nothing will work now n ive to self manage 💔😢
• in reply toTiny09
That's just not fair to leave you like this 🤬🤬I remember one pain management team I was with at one point were absolutely rubbish. I've finally got a good team but it's taken a while to have someone listen to what and where my pain is!! I'm hoping to have injections soon, they didn't work last time but I'm willing to give them another try🤞🤞🤞🤞 keep pestering your Dr to send you to a different team.
Take care and stay safe Lynne
Tiny09• in reply to
I wouldn't mind but the lady i actually deal with has fibromyalgia so you would think she would do more to help but no she just said self manage and do mindfulness.
Jacjai• in reply to
The only thing they tend to offer is epilepsy drugs for the pain, been on pregabalin for a year and unfortunately after time my body was getting used to them and not giving me any pain relief, didn't see any point taking them and gradually came off them, it was the worst withdrawal ever, wouldn't take these types of medications ever again or something similar to them.
With this virus going around at the moment I'm trying not to see the doctors, I know I could talk with a doctor over the phone but I'm just fed up explaining my pain and how I feel over and over again I'm not in the right frame of mind at the moment, my moto is just get on with it.
If I do get to the desperate mode then I would have to make the effort.
• in reply toJacjai
I'm so sorry you are struggling so much. I've had to go to see my Dr for earache and UTIs recently. They were very well organized. Only 2 or 3 people plus me in the waiting room, we were more than 2 metres apart and we all wore masks. All the Drs had PPE on, I was very impressed.
Love and hugs Lynne xxxx ❤️💜
Tiny09• in reply to
My doctors still aint seing anyone all appointments r phone calls unless they think u need to be seen
• in reply toTiny09
Hi
All my appointments have been by telephone first and then if need be they have asked me to go down. Tbh I can't fault them. I know I'm lucky where drs are concerned. There are some I wouldn't go near. Like the other week I had gone down about my continuing UTIs which I know I will have until my op. He just said it's not my thing!! I saw the advanced nurse practitioner the following day , when I told her what had happened she just laughed and rolled her eyes. Bet her pay is far less than his especially as he is a senior Dr!!!
Love and hugs Lynne xxxx ❤️🤗🌈💜
Tiny09• in reply to
Some doctors r just clueless they really are, but guess i have to cope the best way i can
• in reply toTiny09
Yes they are. You shouldn't be left like this, it's just not right. Can you complain to pals or the surgery manager? Xx💜❤️
Tiny09• in reply to
It was pain management tht said ive tried everything n its about managing it now the best way i can, God knows how
• in reply toTiny09
That's just terrible, some of these people just aren't bothered, we are just a number. It was about 6 years ago I was told to do the same, luckily I've got 2 good teams now, one lot for gastro and the other lot for degeneration of the facet joint and my lower back. I've got a pre assessment for my back injections by phone on Wednesday where I'm going to tell them about the base of my neck/ top of my spine. Not sure what's happening there.
6 years ago I was told by a gastro consultant that my upper right quadrant pain was muscular!! 2 years later I saw a brilliant GP who I hadn't seen before was fuming that I hadn't had regular blood tests being on a lot of meds. Anyway she did bloods, an ultrasound and referred me to gastro. There was such a long wait, we paid to get a diagnosis (totally against the grain) where in May 2016 i was diagnosed with non alcoholic fatty liver caused by meds from my drs over the years!! After seeing this consultant a couple more times he said I could see him on the NHS as I had paid enough out. I had a biopsy in the November where I was diagnosed with non alcoholic steatohepitis. Last November my consultant sent me for a fibroscan (I think to shut me up) I had the fibroscan in jan/Feb where I was diagnosed with compensated cirrhosis. I know it wasn't caused by alcohol but I won't drink it as I know it wouldn't do my liver any good!!
Sorry for rabbiting on
Love and hugs Lynne xxxx ❤️💜
Tiny09• in reply to
What's a fibroscan
• in reply toTiny09
Hi
It's very similar to an ultrasound but goes a lot deeper, it is able to tell the Dr what stage liver disease is at. I was told by my liver nurse straight after I'd had it done which was fab. It wasn't good news but she said when your liver is compensated it's working ok , when it gets to decompensated it's time to be referred to being tested that you are ok for transplant. If mine gets to that stage I would be referred to Birmingham or Leeds.
Can you take oramorph , zomorph, codeine, nortriptyline or duloxetine. I know my liver disease was caused by meds but if I didn't take these I wouldn't be able to get out of bed in a morning.
Sorry to rabbit on
Love and hugs Lynne xxxx ❤️🤗🌈💜
Tiny09• in reply to
Thts so crap hun am sorry this has happened to you
• in reply toTiny09
Thank you for your continued support. Love and hugs Lynne xxxx ❤️💜
Tiny09• in reply to
Us fibromyalgia warriors have to stick together
• in reply toTiny09
That is very true. I'm lucky to have a great support network of family and friends and of course everyone on this wonderful forum.
Love and hugs Lynne xxxx ❤️🤗🌈💜
Tiny09• in reply to
Everyone here is absolutely amazing, ive got 1 amazing friend but my family simply dnt understand it
• in reply toTiny09
Hi
That's a shame your family don't understand. Could you show them this forum and see if that would help them understand?
Loveand hugs Lynne xxxx ❤️🤗🌈💜
Tiny09• in reply to
It wouldn't make a blind bit of difference hun it really wouldnt, but i give my bro credit think he realised how ill i was when i was in hospital with doctors thinking i had a blood clot on my lung, shouldnt have took that, n it seems he just dnt care at all. But i can manage on my own i have this lng so i will carry on this way
YASMINTINAFMA UK Volunteer
Morning, sorry to read of your awful pain, are you in touch with your doctor still if this pain is not going away,? feel free to rant it gets you sometimes ,you need a break from all of this as it gets very wearing , I hope they keep an eye on you and you soon start to get some better weeks xx
Yeah my doctor is useless am. Getting more help frm pain management, am due to speak to them on Friday, absolutely fed up of waking up in pain
Sorry I can't really offer any practical help, my best friend is my hot water bottl;e, but just to let you know I can understand and sympathise with you being in constant pain. Sending you best wishes. This is a great site with gret people so you are in the right place!
Hi, might be worth trying an anti inflammatory alongside your usual pain relief.
I use Arcoxia (Etoricoxib) but there's a few others you could try.
Hope you get some relief soon
Ive tried naproxen and it dnt work
Naproxen didn't work for me either
hi Tiny I'm sorry your struggling I've also been to a&e thinking I had lung inflammation but it was fibromyalgia I also find it hard to breath especially when I have costocondritis I feel like my ribs are in utter agony I come out of a&e with more pain killers and told it's fibromyalgia but I felt like my lungs were really in flamed it not alone mate that symptom will eventually go and move else were in the end u start to recognise the symptoms of pain travelling round the body but we do panic as we think it's something more sinister but it's just the fibromyalgia xxx message me when ever xx
Tiny09• in reply to
They didnt give me any more meds coz am on some anyway but tbh nothing works 4 me yeah am on 35mg amitriptyline at nite but they only help me sleep nothing else
Tiny09• in reply to
I proper panicked when my doc said blood clot i was lyk wtf
So sorry to hear this Tiny09. I hope you feel better soon. Have you tried Horizant and gabapentin?
Gabapentin yeah and pregabline, even morphine patches nothing works at all
I hope you’re feeling much better now, so sorry to hear you’re going through so much. Sending positive thoughts and healing your way. You can get through it!! Xxx
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