I was diagnosed with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis 6 years ago and diagnosed with Fibromyalgia yesterday.
My pain is badly managed and I’m in constant pain daily.
Have any of you found successful ways of managing your pain?
I’m being referred to physiotherapy but I’m not all that optimistic about results as exercise always leads to a massive crash which leaves me in bed, exhausted.
Any ideas welcome
Would also very much like to make some new friends too! Introduce yourselves please
Written by
chronicallyfabulous
To view profiles and participate in discussions please or .
Hi Hun, welcome to our lovely and friendly site. I’m not sure I’m going to be much help as my initial diagnosis is a benign spinal cystic tumour and fibro was diagnosed as a result of this. Therefore, my medication is more for the tumour but can also treat fibro. I’m on pregabalin, slow release morphine and duloxetine for neuropathic pain. I also use a hot water bottle, heat pads and Epsom salts bath. I wish you well finding something that suits you. I think most of us would agree that it’s all trial and error finding the right combination of meds to treat our pain.
Welcome once again and feel free to talk/ rant/ moan etc anytime you want to Hun. That’s what we’re here for. Take care and gentle hugs to you xx
I’m really sorry to hear about your spinal tumour, is there any way they can remove it at all? Hope it doesn’t cause you too much grief.
I should have written what I’m on really. I’m on Duloxetine, Gabapentin, Zapain (essentially co-codamol) and that’s it for pain. I was on Naproxen but had to be taken off it as it started to cause severe chest pain and upper gastric bloating so I’m now not allowed to use anti inflammatory tablets.
I’ve tried hot water bottles, more because I struggle to regulate my temperature with having chronic fatigue, I’m always having baths but never tried Epsom salts. Are they readily available?
Thank you so much for replying and for your support. It’s few and far between in real life thanks to being stuck at home so it’s lovely to have someone to speak to online. Thank you.
Hi lovely, I’ve had 3 lots of surgeries on the tumour already. They can’t remove it completely because it sits at the base of my spine and it’s too risky.
I can’t take anti inflammatories either as I’m allergic to them too. Yeah you can get Epsom salts everywhere. Definitely worth trying them Hun.
You’re right, support is definitely few and far between. My so called friends never bothered with me once I went off sick. Illness definitely shows who your true friends are.
I’m so sorry that they can’t remove the tumour. Are they able to shrink it at all?
Anti inflammatory meds just cause me more pain. Not good.
I will be investing in some as soon as I have some money. Unable to work currently so pennies are sparse.
Completely agree. When I first got sick my friends tried but soon gave up as we were all young and they wanted to party. It’s hard. Especially as I’m in my mid 20’s and feel so disconnected.
Hi chronicallyfabulous been struggling through work. Also had some migraines as per normal. Thankfully not too many. Have you heard of dribose for energy? I have a sense of humour too.
I’m sorry to hear you are struggling so greatly. Do you get any relief using medications for migraines? I haven’t heard of that, what is it? X
Hi hun , yes I have all 3, rotten itsnt it. as for excercise maybe find out if there is a hydro pool nearby as that form of excecise is gentle on the body and after a few weeks it will ease a lot of pain...at weekends i go to the local pool wioth my daughter and sit in the jacuzzi whilst she swims ( I think shes as the door now) bye for now give them a try.
Don't panic over pain and keep stress to a minimum. Can't cope with pain fatigue and stress. It is doable to cope better diet, supplements meditations etc. and realising meds all have their own, often major, downsides. Acceptance of what is happening does help. Fighting to do more, fretting over life wasting just wastes more, as your flares flare worse. It's a bit rubbish but if you can see life as something to learn from, these conditions will teach you loads. Yay?
I really appreciate your message and I admire your optimism. In time, acceptance will happen for me as I already have a chronic condition before fibro. Just going to take time!
Hi there, I went to physiotherapist and told them about fibro and chronic fatigue and difficulty exercising. Also told them heat really helps and they referred me to hydrotherapy, so don’t be afraid to ask them for hydro. Start off slowly though, I threw myself into it as I hadn’t exercised in years and missed it, bang, big pain exhaustion for ages. Epsom salts in bath also very good way of absorbing magnesium which very good for muscular pain, I use it all the time, also makes your skin nice and soft ! Magnesium spray I use on feet at night and helps with restless legs in bed. I also use an electric heat thing that goes round neck and shoulders, it’s great for pain. Good luck with finding what works for you, it’s all trial and experiment. Ps, love the name !!
Thank you for your message, Shazzzy. I also like your name, love the play on ‘zzz’. How are you feeling? All of your suggestions are wonderful and it’s very thoughtful of you to take the time to pass them on to me. I really appreciate that! X
It's kinda something to think on; stuff I've observed or learned. We risk fighting when we should maybe just relax n let go. A waste on energy for no return except more pain. I think of Don Quixote tilting at windmills. We need to save our fight for real battles we can win.
If we merely lie back and ‘accept’ our fate as such, surely we are giving up before the fight has even begun? I am not criticising you at all as I do believe we have to relax a certain amount and we all have days where we’d like to do nothing but relax but if we don’t use our voices to raise awareness and continue to research, we may never get a definitive answer. If we all lay back there would be nobody fighting for us or with us. X
Heck, raising awareness, research that makes a difference. Fretting n worrying over being poorly just makes it worse. We all have our tricky days when we despair coz fibro is tough. Just my point was beware of making it worse by stressing. Was reading about ldn earlier n if you have funds there are drs who can prescribe over the phone. I'm so tempted to try. Just the little problem of money. Don't know anyone personally that has tried it coz GPS won't prescribe.
I will do some research into LDN and see what I can find out. I like to have statistics and research about benefits of medications before I consider trying them. Thank you for the heads up though. I hope you find funds from somewhere to try. I feel your pain with lack of money though.
I feel what you are saying .. I was diagnosed years ago before my fibro diagnoses with Cfs and then for some strange reason it was never spoke about again .. but like you I went to see physio and it made me worse and I told them I couldn't go back and they didn't push it ..I also suffer more when I take my meds as they can make me so tired . So my dilemma as I tell my doctor do I not take my medication and be in so much pain I can't work it do I take my tablets and then I sleep 24/7 ? .... to which no answer has ever been given ..
Anyway good luck ... and hi !! Hope you make plenty of friends here xx
Bless you. It’s so hard to find a balance and to achieve equilibrium with these illnesses, especially when doctors don’t understand the difficulty in not being able to work. The state rarely see these illnesses as qualifying for benefits or financial help, which leaves us in such an awful mess. If only we could ‘prove’ how these illnesses ruin and steal our lives, maybe then they’d reconsider.
I truly hope you find some peace. Thank you for your message xx
Why can we patients not be believed? So often , people are complaining of very similar symptoms(in their own way) over n over n it's fobbed off as hyperchondria. Take wheat intolerance, complaining since the early 90s yet only now are some people joining the dots n realising it was then that farmers were taught to use glyphosate to not only kill weeds in the growing phase but also to dry and finish the wheat,. There is no consideration that at this late stage the poison cannot metabolise out of the plant. Metabolising surely only happens in a live plant. Why we're drs not asking questions? This new regime was surely not secret?
How many women particularly were. Branded neurotic? How unfair to live with this label that allows every symptom to be dismissed. And the real driver for this, was it to deny sickness and disability n thus expensive support
When you suffer like this it makes you very cynical. All the well tested n researched meds I've tried have not helped and worse generally done damage. I fear profit comes before people. Wish health industries were not for profit. I think things would be very different.
I completely agree with you here. How many women were locked in insane asylums for ‘functional’ disorders or ‘psychosomatic’ illnesses? It’s a disgrace that just because so many of our symptoms are invisible that they are dubbed as unreal.
We are not hypochondriacs, we are not lazy, we are not attention seekers, we are not fakers, we do not have ‘psychosis’, ‘yuppie flu’, or any of the other derogatory terms used to describe sufferers.
We are humans and we matter.
You would never allow an animal to suffer the way we do, the owner would search high and dry for a way to treat the illness and get Doctors only search high and dry to make a profit off medications that often make us worse.
We have to be our own owners. Many of us do search high and dry and instead of being praised as responsible, caring, and doing the right thing, we are labeled obsessive, hysterical and bonkers.
Ever tried telling anyone you are not bonkers? Yes, no easy is it.
Not easy at all. Especially when you know your symptoms like a list. People assume you must be mental to have that many different issues. All in good fun, ay!
Had a Gynae consultant tell me effectively being selfish wanting pain relief nearing the end of my pregnancy as he said 'I had to think of the baby before myself' even though midwives said the stress of being in pain might be bad for the baby. He didn't believe in Fibro crossed off most of my medications and the Rheumatologist came along and reinstated most of them!!! Needless to say I moved gynae consultants .....to get better treatment. I should have reported him but going through so much and then busy after baby born the time limit was gone.
It's an awful situation to be in as sometimes the more you protest you can see them doubting you more ...as 'Thou do protest to much' saying. We seem to always be between a rock and a hard place.
Were you making a big fat fuss by any chance? Ooh how wicked!! On the telly, drs chase their reluctant patients down the road to catch n treat em. In the real world, we get shooed out of the surgery (if we can get an appointment to get in) for trying to tell it how it is and get help to cope.
Do they not realise, even if the pain isn't real, (which I believe it is), there is still a problem? And it should be taken seriously.
Your experience sounds awful. Thank goodness you had other more helpful support. Don't we all know, happy relaxed mum generally makes for a happy relaxed baby? A mum in stress mode, surely bathes her baby in stress hormones and who knows what issues that can bring? ADHD Hyperactivity, sleep issues, comes to mind as baby arrives used to living with high levels of exciting hormones.
With Fibro we go in to see our GP's saying ugh, I can't cope, I want my life back, help me! and they ignore us. And we do seem to cope somehow with the pain and our lives wasting, coz at some point they see that we all troup back and try again. I wonder is that why they think we are lying/exaggerating? If we fell off our perches, would it help?
And oddly, Fibros more than the general population, do fall off their perches because of (seemingly unrelated) heart issues and cancer, and worse, they are also prone to becoming unscrewed and verily leap off their precious perches in despair. And even with the research telling how Fibros are vulnerable, we still get fobbed off with no real help.
What do we have to do to be taken seriously?
Sorry probly hijacking here but I'm in the mood to rant. Puppies much as I love em, just aren't enough right now.
I know with over 3M sufferers in the UK alone I don't know how they think all that many people are Hypochondriacs!! Plus with this great numbers mirroring or even greater in numbers than other 'well-known' conditions with much more emphasis put into research why do they not address Fibro?
Seems they are just happy to ignore the problem as not life threatening although I feel it is 'life stealing'. As long as they is doubt whether or not it is physical or psychosomatic we are always fighting for everything which is so distressing ........for the Fibro community.
Ugh 3m that's a lot of suffering. Guess that's why I fight so hard against being badly treated. So folks don't have it in em to fight n that's how it is but it allows others to take advantage. So many people medicated often to the point of insanity n the patients believe it is them not the meds.
What an absolute horrid person. I’m so sorry you had to experience that, especially during an already stressful time. I hope you and your baby are now doing better x
Yes chronicallyfabulous Thank You for the well meaning concern this was back in 2012! But it is a classic example of the stigma by some healthcare professionals who clearly have little knowlegde or believe the psychosomatic theory!
Completely agree. It’s a shame really as I’ve ‘met’ some of the nicest people in these two communities. Funny how being pushed aside makes you a more considerate and caring individual.
Thank you for taking the time to contact me. It’s lovely to have made your acquaintance xx
Today I have been stuck in bed but my partner has the weekend off so he’s been doing some work ready for a course he’s on and reminding me when I can have more pain killers.
Thank you, Belleheather for your response. I already have a very good diet. Everything I eat is made fresh, I don’t eat processed food, minimal dairy, minimal carbs etc. Healthy eating has yet to be successful here but all advice is welcomed.
No one is better than anybody, I just try to control what I can. My partner helps me to batch cook, I force myself to eat healthy snacks, I take a daily effervescent 1000mg Vitamin C tablet and a multivitamin that contains iron.
If you don’t mind me asking, what’s TMJ? That’s not one I’ve heard of before.
I hope you are finding some relief from your pain x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Recently diagnosed fibromyalgia 
Recently diagnosed, need help
Recently diagnosed.
Recently diagnosed , eventually !
