Been suffering for god knows how many years with Fibromyalgia & the pain never leaves me alone.Have tried every painkiller & neuro blockers known to mankind via NHS & private & nothing works on me at all.
Fed up with living in constant pain & practically zero energy levels etc.
Have seen pain consultant specialist & normal GP,s but all seem pretty useless actually.
Cannot see how deep breathing can help.
Cannot do yoga or Thai chi due to my inoperable spine damage etc.
They say focus on something like a interest but how can you when your in sheer agony.
They say fibromyalgia is not progressive & doesn't get worse well I don't believe this for a second as the pain eats away at you like no ones business etc.
This is not a rant either it's called being totally honest & speaking out.
How does one exercise when in terrible to hell driven pain ?
Fibromyalgia definitely takes away your motivation & you feel old before your time literally.
It's not a mental illness at all although there's uniformed people out there who think it is etc.
Said to a GP once who was useless that if you believe fibromyalgia is a mental health issue then if I kicked you hard in the leg then would you say the pain your in is all in the mind.
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Fibroguy66
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I agree with you, its " the white elephant in the room" , its good to shout out and say "WE ARE IN PAIN" it is a horrible disease and some of those suggestions of mindfullness and exercise smell the flowers just make me angry. Glad you felt you could shout it out. We have to be Fibro warriors and and shout out and say it as it is. Hope I'm not rambling but thats how I feel.... Many people dont seem to know what it is..... There, I have had my shout, I will take my so called pain killers that don't touch the sides, get out of bed if I can with a smile, and if any one today asks flippently " are you feeling better, I w
It's really hard when people don't understand the condition. I often get asked "Aren't you better yet?" as though I've had a cold... I'm fighting to get ill health retirement from work which has been turned because with a bit of physio and a bit of counselling they think I'll be fine! All we can do is to be honest - whether people want to hear it or not. When I try to explain about forgetting names they say oh that happens to us all - it's just age and I want to scream at them "No it's not!" Before I had Fibro I was as clueless so I do try to be patient. And people get mixed up with polymyalgia that people do recover from. If your GP is not helpful keep going back and ask to see a different GP - there are some good ones out there. Do what you can, when you can. See if there is a local support group that you could go to - it really does help to meet people who really understand.
The situation you are dealing with linked to families or friends/work colleagues can be impossible to share how things affect you . you're experience with life changes due to this illness offen go unnoticed.
when pepole ask you loads of questions they do not really understand or even care or listen can feel humiliating.
I have felt this from others many times and after many years living with fibromyalgia and other illnesses I do not bother to explain myself anymore. It's less stressful for me to stay silent unless I am asked. I now walk with two sticks and obviously others know there is something wrong but don't always ask.
I have changed my mindset to be proud of my body and the torment it goes through every single day. My body puts up with so many symptoms and I don't hind them anymore. I have a positive attitude about the fact I am dealing with an horrible illness and my muscles scream back at me in pain. I smooth my body with warm oils and rub to ease the pain.
I wish I never heard of fibromyalgia but it is what it Is.
You are the brave one dealing with this illness plus your body plus your mental heath. Don't be so hard on yourself about others understanding you. You understand why you feel the way you do and that's all that matters when dealing with this disease.
You need big hugs. Never forget moving forward should be about your lifestyle changes and your mental health. Relax with your frustrating friends and work. If you want to share your abilities and limitations talk to your GP and request a letter from him to your HR department. Be positive because your trying to work and live life with an illness that others don't understand.
Put yourself first because your worth it. You are the shining star🌟 . You do not need to prove anything to anybody about the way you feel.
Take some self-help and looks at ways to support yourself to improve your health.
Stretching exercises are great to ease pain. Chair exercises are also great for Fibromyalgia. Look at your vitamins . Fibromyalgia ones are sold on amazon. Use a ten machine for pain. Ask your doctor about courses on pain and fibromyalgia they can help you understand you.
Talk to talking therapist website and sign on to chat to them about your situation they are good 👍. Research fibromyalgia as they are learning new things all the time. Good luck 👍 God bless.
Every thing you have just said is such a familiar test for all,
The thing I got 🤬 off was the pain clinic, I bet it's not just me, The woman drew a 🤬 foot and a gate and was talking but I couldn't hear her because I was trying really hard not to clobber her, The way she spoke sounded like she said It's all in my head!! I explained my pain to her and said if it's in my head tell me why I have not been able to give or accept a bear hug from my Hubby in years,
The same in our sexual relationship, There's nothing more off putting than trying not to shout out or yell because even the slightest touch can be so painful,
This disease is a selfish 💩💩 cruel 🤬🤬 and I do think it is progressive, because I have had my whole life ripped apart and the longer it goes on I'm afraid to say the amount of times I've just wanted to end my life,
My body racked in a pain knowing there is nothing I can take or do to ease that pain, Laying on my bed almost holding my breath trying not to move as I know whats coming,
There is another thing that really 🤬 me off is the ones who, when they find you have Fm say stupid 💩 like oh yeah I had that before and now I'm better ??? You have to be kidding me?
The things I used to take for granted walking, talking,bending to pick stuff up,Washing my own hair or just making a cup of tea, Standing and walking, Day light didn't used to hurt and
Now if that's not progressive, I want to know what is, I never used a wheelchair or a stick!! Now I rely on them God forgive me the next person says " you looked all right when I saw you a few days ago"
It takes a great deal of energy trying to look ok and I don't have any energy to tell them to chuff off
fibromyalgia is progressive.Everyday as mentioned I live in 24/7 pain with no good days at all.
Fibromyalgia is definitely not a mental health illness by far.
I'm beyond fed up with the way I feel 😔 most definitely & everyday is a uphill struggle & fatiguing amongst other issues.
You get to the stage where you just feel like that your half the person you used to be.
More needs to be done in the research of fibromyalgia.
Met a guy from the states last year who's a CEO into medical issues,he told me that there company was experimenting with fibromyalgia for the last 5 years but gave up on further tests due to them running into brick 🧱 walls & finding no positive answers etc,so they closed there program down as it was running into mega bucks.
If someone is in terrible pain then how's breathing exercises going to help, Even when pain medication does not help either ?
I've had pain therapy in the past & the c.ap they tell you is laughable.
Look at a apple 🍏 imagine it's texture & how good it looks now imagine biting it & imagine it's taste,the taste is good & curing,the flavour is your pain saviour.
STOP what a load of 💩 that is.
Heaven only knows who writes there books for them to learn tut.
Saying that nothing works or giving a list of things that do not work and suggesting that this is the same for all is not going to help you or others and is also not correct.
Simple example is codeine. 5-10 % of white people will have no positive effect from it due to their genes. With poor metabolisers on top up to 25% of white people will not have an optimal response to codeine. it is known as the CYP2D6 gene.
But this does not mean that codeine is ineffective as a pain killer but for that 5 - 25% it would be poor to having no effect. This is not specific to fibromyalgia.
As to deep breathing, mindfulness and other things you have mentioned that do not work for you there is research that shows in works for others. The placebo and nocebo effects are things that we are still to discover more about but there is a wealth of evidence that ties patient mindset to treatment outcome. Some treatments require a patient to invest in and give a chance for them to work.
I got that but some of your statements were indicative of applying to all. I was also trying to cover the response of the individual as well as all people.
You are also shouting down those treatments that do not work for you which if someone else is reading it may put them off trying them. You mention the breathing and are scathing about mindfulness (i.e. the apple) yet if you search on here you will find some do use these techniques as part of their toolkit.
Drugs do not tend to take all your pain away (especially with fibro) and alternative therapies also do not do this. So getting more tools and finding what can work for you is what most people have to do.
My condition went from a 9.5/10 pain and all the misery that goes with it to a 4/10. My breakthrough was doing a free course from Nuffield Health (classed as a charity) that they run on occasion.
They had a PT doing an introduction to everything in small groups. I stuck with resistance and cardio.
First month was very tough, then I think my brain became less sensitive.
I still take Oxy/Duloxatine which I'd like to try and come off which will be evil im sure.
Hi there I am recently diagnosed with fybro, but had it since June, it was really bad and I was crying with the pain
I am now managing the pain with chaga mushroom supplement for muscle recovery, I use magnesium spray on any part of the body that hurts, and I use an ems vibration pad on my feet and hands.
The ems pad sends currents through your feet or your hands as you can use for both.
This is good for circulation which is good for fybro, I hope this helps you as I know what works for one person does not work for another.
I also stay away from any pharmaceutical medication as they are all addictive and can make pain worse in some people.
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Report finds fibromyalgia "Not all in the mind"!!!!!
How do you cope with the pain?
So tired, so much pain....
Don't give in to fibromyalgia 
