After 26 years of chronic pain & it's other associated conditions I've finally decided to give up.I've spent & wasted thousands on private consultants & specialists to no avail.
Painkillers & neuro blockers have no effect on me.
Pain management NHS group courses are a waste of time as I know more on fibromyalgia then them as coming from a medical background.
Deep breaths do not cure IBS/Ibd issues & chronic pain.
I'm a intelligent person I would say without sounding big headed etc.
There's no cure for fibromyalgia at all.
So if no help then what's the point anymore.
Fibromyalgia is definitely progressive in nature although it does not kill you.
Dr,s haven't got a clue so they give you just more sweets to swallow and suck on (medication)
This is not a rant etc it's the truth.
If you have fibromyalgia & you have a good day then I'm happy for you in a good way.
Last pain management course I went on, patients were asking how do I get pip where questions should be on getting help for there conditions.
Written by
Fibroguy66
To view profiles and participate in discussions please or .
sounds like you are having a bad day, we all get them, but just sometimes, it helps to keep a positive mindset, the more you get get up, it just makes the pain worse.
I swore cbt didn’t help me for years, the stupid things they said or got you to do, wt*, then I got sent to a specialist pain professor, we worked together for 6 weeks, then a break, and I tried all the channeling, didn’t work, another 6 weeks, then another, I finally got my brain in gear, I suffer with bad bladder spasms and pain, I learnt how to travel my mind to the pain, In my mind, I kept it warm, and relaxed, it takes the edge off,, as it does with my spine nerve damage, I think it makes you think about something else, and you trick the brain, I know it doesn’t work for everyone, and it takes a long time to get it right, but it also keeps you calmer.
Hi. you say it's the truth. I would say it's one person's opinion . Others may disagree with your personal findings.
The facts are there is no cure for fibro. Pain meds for many don't help and doctors know that and are reluctant to prescribe them.
Many private doctors work in the NHS so what they may advise or prescribe won't be any different to what your GP or private clinics may advise. The only difference is your getting in to see them quicker and paying through the nose for the privilege.
My personal findings is stress and anger at the medical profession because they dont have the answers only makes everything feel so much worse.
But its not the Doctors fault they don't have the answers to our suffering. Fibromyalgia is not the only chronic illness that has no known treatment Sad but true.
I hope you do eventually find something that may make your life a little more pleasant and less stressful.
HiThink there's many out there who would agree actually with me.
People write to me all the time & we discuss issues in a calm & polite way etc.
Whats your views on chronic 24/7 pain that won't go away ?
Or go into a remission phase ?
A persons quality of life just gets shattered in to a million pieces etc.
I'm horrified by how many people have told me that there partners have left them because there ill & took there children away to & stopped contact with the children and the sufferer etc.
There are plenty of people that agree with each other that are still incorrect. That being said what Dizzytwo is commenting on is that you have continually expressed an opinion that infers or straight out says that Fibromyalgia is this or that because it is your experience. You also mention other conditions and experiences but do not differentiate your experience from others.
There are may with fibro that are working full time jobs, working part time, some that still very active, some that are mostly active, some that have reduced mobility and some that are bed bound.
There are people with pain (if using a 1-10 scale) under 3 almost all the time, under 7, or higher than 7.
Bottom line, casting absolute judgements is always going to be wrong but your experience is yours and valid and I have sympathy. You say there should be more research but discard the research conclusions you do not like.
On your specific questions, I have chronic pain 24/7 but it is mostly under 4 all the time and can be amplified by action or stress. I have never had a remission but some have reported it. It is commonly commented on that during pregnancy women have experienced remission.
Your personal situation is more complex than mine and probably more than most peoples so a treatment programme may be more challenging to find. However, certain treatments in fibromyalgia need an open mind and you with all due respect appear to be closed off to some. Not saying they will definitely help but they are being suggested for a reason.
Thank you Des, I agree - the consultant told me PMA (positive mental attitude) was essential. To be honest it was the only piece of advice she gave. I try to busy myself with other things. Part time work, uni course (with special adaptations and reasonable adjustments in place) keeping the archives for a club I am a member of and sitting on 2committees. Teams and Zoom calls have opened up a whole new world for me. Hypnotherapy works for me, went in with open mind not sure whether it’s that “me” time it allows or if it goes deeper but who cares, if I find relief, how it works. It may well be the placebo effect. Although strangely enough 3 courses of CBT did nothing for me. Yes, agree with you my pain is constant too but if I didn’t have all my hobbies/interests I would I’m sure I would be more aware of the constant pain.
I am so sorry your feeling like this, I can completely understand it, I have felt like this myself on many occasions.
One thing I would say is that what gets me through these dark times is Dr Leon Chaitow - he has written a super book called muscle pain and fibromyalgia - it is clear that he has a wonderful understanding, its a great book very positive, it quotes of studies on the people that do get alot better and even recovered. One thing that he does say is that trigger point is essential.
I am also a suffer of IBS , I did for some reason that I am not sure of have a break from IBS, it just went for about a year and unfortantley I ate some GF bran flakes and it flared up, as of yet I do not know why but it gives me help that if we can out right what has gone wrong we can be free of the awful condition.
Please don't give up - your health and life are worth fighting for, but I do agree that medical professionals or the average GP are not the answer, even if they cared enough to want to help - we are a mystery too them.
"I am also a suffer of IBS , I did for some reason that I am not sure of have a break from IBS, it just went for about a year and unfortantley I ate some GF bran flakes and it flared up, as of yet I do not know why"
Because bran flakes are not food. Grains are not food, even though we've been brainwashed into thinking they are good for us. Grains/Bread/Cereal = inflammation. Change your diet, Kitten-whiskers. 👍
I've had to change my diet alot, it's made little difference. The healthier the food the more of an issue for IBS. So I balance it the best I can 🙂 I don't think it helps with low stomach acid. Its sadly not so simple
Agree with all the replies you've received so far. Once you accept where you are right now and begin to live with rather than continually searching for cures and reasons then I personally believe that's when you become much more able to cope and deal with whatever it throws your way.
Changing your focus from your pain and everything that comes with it can be quite empowering and my personal favourite is a big FU to all of it, but then I do have a bit of a potty mouth and swearing and the ability to laugh at myself is definitely in my very large box of coping tools!
I'm done with the docs and I'm done with searching, but giving up? Don't even consider it. We are definitely made of strong stuff, we have to be. There is no cure, yet, we all know that so why waste precious time & energy constantly searching. Obviously keep your toe in the water though, just not all the time.
I just read a comment the other day from a medical professional on chronic pain patients, reminded me of when we are accused of pretending to be ill when really we pretend to be well so much of the time.
Totally agree with you. If on any time my pain increases, i swear and shout at it,sometimes using words I didn't know existed! Doesn't do much about the pain, but really makes me feel better about it!
Yes , agreed , you tell the tale of us all.Acceptance and Adaptability are key to having a fulfilling life with any health condition.
Pain Managed might not be Pain Cured , but a Pain or Health Managed life is still incredibly fulfilling , when you don't just accept but embrace your " New Normal" and stop grieving for or desperately trying to claw back to the "Old Normal" which isn't fit for purpose for you.
We are all individual and so finding what works us a matter of trial and error. Some days even what usually works doesn't work!
In time , you learn to listen to your body and find what pace you need each day.
You can try various medications and Self Care advice and some work , some don't.
You won't be cured , but when you get to the point that you are 85% Pain Managed most of the time whilst still enjoying a more well paced lifestyle that's an achievement worth celebrating, it's not a failure.
Being 100% Pain or Symptom Free all of the time can't be the ultimate goal with a long term condition , it's not the ultimate success , trying to reach that and making yourself more ill trying to achieve it shows a lack of acceptance of what condition you have.
Learning to Live with Fibromyalgia and control it's diva like behaviour whilst getting the most out of life you can manage with your uninvited friend in tow is the ultimate success.
Reiki is my failsafe! I learned it quite a while before I felt so weak, unwell and pain flooding around like the sea on a beach... It's worth meeting the people in the group you learn it with and imbibing the atmosphere around all of you together. They are usually pretty nice, open personalities who practice it, and you make friends. Using it gives me some control over how I feel inside (as well as allowing the unexpected.)
After the first attunement, if not before, it's there in the night for you. People who practice it often do feel surprised when it works because they are still absolute humans inside, but it can be a surprising and significant energy. Suggest spend a tiny bit more money trying it if you haven't already. - Was heavily depressed by something all yesterday and for a second night last night so I shall be using it today outside in my shed where I have drawn the Japanese symbols it uses on a whiteboard (... as in how to beat brainfog!!!) There is a little heater in there too for some warmth so ...I really must express some gratitude to you for being instrumental in reminding me I have that in my bag, and motivating me to go out there and get into it again. I wouldn't be surprised if you already practice it after all my blurbing on. So, "Just for today" may you be 99 and not 66.
Thank you at last someone is saying what it is!!! ,..... Like you I have tried everything,. I know we all try to cheer people up but it really doesn't help. IM IN PAIN. Its not all in my mind the, pacing, mindfullness, relaxation etc etc do not work. Im sure all well meaning... But after all that I'm still in pain, fibfo fog, exhaustion I could go on and on. I creep back in my bed at night knowing the next day will be the same. Fibromyalgia is not understood andI'm sick of being asked " are you feeling better now"!!! Sorry about the rant but its out of dispair.
I am sorry you are having this experience.Positive mindset can sometimes be toxic positivity as we learn to ignore everything and push the fear away just to be inna hipnóticos state of bliss. It might work for a while it did for me for years but sooner or later it will stop working. This is my personal experience, I learned so many spiritual new age modalities since 2019 but I am not recommend any anymore.
You have all the right to be upset and rant as living in pain is not beautiful at all. The world right now is pretty much chaos in many countries, so how can you be positive all the time about life when you experience suffering and know others are suffering? It is not real to be 100 % positive everyday, 24/7. Thst is pretending and it is not ok. Sending you hugs 🫂
remember however hard life is. We only get one. Live it and love it the best way you possibly can. Fibromyalgia doesn’t have to completely decimate your life and leave you with a million and one regrets.
I'm so sorry to read your story . I don't have fibro, but I have RA and many more musculoskeletal issues suffering chronic pain. I totally understand when you say you know more than the "experts" . The pain wears you down. I'm grateful that my RA has been managed well through.the 30 odd years, but I now have so many back/neck problems that I thank God that this has become late in life, unlike you and many others who have suffered for years. Xx
I do agree on some things you mentioned not all.In a lot of illnesses, people experience them differently. Some of us have a different pain threshold too.In my experience we don’t all suffer from them differently same same things.I have a lot of illnesses and a large concoction of drugs that make it difficult to treat some.I would say that my fibromyalgia has not got worse since 2011 but a lot of the time it is hard to distinguish which disease is making me feel bad on that day.I definitely am not a positive person but doom and gloom.An operation I am on a waiting list for ,my brain thinks I won’t survive but I will say that I am a very stubborn person and won’t be put down with my illnesses.I do make myself ill at times trying o do things when I feel most well and stress a lot which doesn’t help.
You mentioned partners leaving.I can totally understand if the ill one is angry and making that persons life hell .Crikey I get cross when in a lot of pain but me and my husband love each other and it’s a two way partnership of good and bad times. we sign up for sickness and in health and to be honest I thought it would be me caring for my husband mostly but he rallied in his illness .
By the way I have never been sent for pain management .My concoction of pills for all my conditions help them all mostly.
I can feel your frustration as I too have days where I just want to scream and shout how unfair it all is. It is a hidden condition that no one understands unless you are going through it. I gave up on doctors years ago and the pain clinic was a complete waste of time. It took me 45 mins to get there to be handed a questionnaire, ticking boxes on the level of pain, how I was feeling ect 😡 and for what!!! I now do things to occupy my mind I walk every day even in the bad weather and even if I have a flare up, I use my hands because it does help my osteoarthritis so knitting and sewing, I even started watercolour painting by watching you tube videos, I’m not an artist but somehow it distracts me. I’ve just started circuit classes and Zumba Gold and found wonderful instructors who can understand if I miss any when I have extreme flare up days. Not everyone is the same and we are all different in how we cope with this damn condition but I think the key to unlocking it is to understand how far you can go to overcome those obstacles. Big hugs all round to you all, I love how we can release so much on this website 😘
Totally agree with you. 25 years of ME and fibromyalgia. Before me my aunt was diagnosed with fibromyalgia in the 1980's. There has been no progress made with either of these conditions at all since then. Except maybe better recognition.I have just accepted this is how my life is. I no longer waste money tryng to recover. I just live from day to day. Personally I just want to see the riddle of fibromyalgia solved in my lifetime. It will be too late for me to have a cure, but at least I will know what the cause was. Maybe the next generation of my family will have a treatment.
In the meantime, I just try and get pleasure from the little things in life. I never think about what I have lost in life. It is a waste of time. I also go to bed whenever I feel like it, without any guilt! Pets are a big help. They area good companions for all the hours spent in bed. My pain is always better if I do as little as possible.
"There has been no progress made with either of these conditions at all since then. "
This is just not the case that you can see by looking at fmauk.org/history. Has there been enough progress... certainly not but that is not the same as no progress. Brain scans in early 2000s, drugs in 2007, more awareness and understanding of things since. Nice guidance in 2021 as well as RCP diagnostic guidance at the same time.
If none of this helps you then it can seem as if nothing has changed but it has and you just need to compare awareness from early 2000s till now. There have been changes and progress in ME but I do not feel as if I am the best person to speak to that.
I'm afraid I tend to measure progress in terms of treatments. There still doesn't seem to be any better treatment now than when my aunt was suffering in the 1980's. I have seen endless research papers and discussions over the years, but they never seem to translate into any real pain relief. And in the real world, most people still stare at you as if you have come from Mars if you tell them you have fibromyalgia 😂.
There are people that have their life back with pregabalin, duloxetine or gabapentin. The first of these two came in 2007-2009. They work in about 30% of people and not everyone can tolerate them but again saying there has been no progress is a singular perspective that I can empathise with but also not agree with.
The awareness now is no longer fibro what, more of I have heard of it, or is that the thing Lady gaga has.
I had 2 years of meeting up with my GP every 28 days, comparing notes, trying different drugs, therapies, physio, even a few snake-oil remedies.
The consultants I can remember being referred to are:
Rheumatologist
3 different Endocrinologists
Psychiatrist (apparently I'm completely sane though my OH requested a 2nd opinion).
Physiotherapist
Dieticians
Cardiologist
Gastro-Enterologist (neither of us knew why I was referred to her).
The Pain Clinic assessed me and said I already practised what they preached so they couldn't help me.
After a couple of years I reached the conclusion that I was spending far too much time worrying about things I couldn't change and not enough time doing things I was still capable of enjoying.
I can't go hiking anymore but I can drive (or be driven) to the top of a hill and sit and have a cup of tea.
I can't sail anymore but I make a great commander, barking orders at my sons and OH, or just use the boat's engine if I feel well enough to steer.
Birdwatching has become hobbling to the nearest hide rather than climbing the nearest mountain but there are still birds to watch.
I spend my first cup of coffee of each morning attempting to assess what I am capable of doing that day then get on and do it but there is no such thing as failure if I don't achieve those goals...It was just an overestimation of my energy or underestimation of my pain.
Today my hands and arms don't feel so bad so I might play with the new sewing machine that I haven't been able to use since it arrived at Xmas.
I am realistic about my abilities (or lack of) although I frequently overdo it and spend a week or too paying the price.
I am currently contemplating buying a small sailing dinghy so I can try a bit of light sailing on the local reservoir rather than the sea-going passage making I used to do. I will even attempt to teach my family to sail so I can relinquish the Captains hat and just sit on deck and enjoy the sea.
I would happily trade a day's sailing for a week in bed paying for my exertions.
The only problem is...I spent so long typing it that my fingers hurt too much to do any sewing so, as it's a lovely day, I'm going to drive to the top of a hill and have a cup of tea (and even a bit of cake).
Well said - it’s the same life only different. I competed at top level with my dogs - can’t do it anymore so I found alternatives. If I can get a ride to the events I steward and do the paperwork ring side. Still see all the folk I used to compete with. Ok it takes planning - rest 2 days before and 2 days after but it is manageable.
For anyone struggling and we all do, nobody can be positive 100% of the time, I suggest the glad game as exercised by Pollyanna in the book. It sometimes resets my doom days into a little more positive day.
desquinnPartnerVolunteerFMAUK Trustee• in reply toCarlt
The difference between your "giving up" and acceptance does not seem so great And whole heartedly agree with with paying for the exertions if you like doing it.
Hi... how are you doing today?? 26 years of chronic pain wow, that will definitely take its toll on the body and the mind. I'm not 26 years in, I'm around 7 and I totally understand what you are saying. Know what really bugs me, when people who should understand, tell you to be positive!! I'm sorry but when you at your wits end with the endless struggle that is fibromyalgia being told to think positively is absolutely zero help. You have expressed how you are feeling, its your truth and your thoughts and you absolutely have the right to them. It's exhausting feeling like this. My GP who is very supportive has admitted she doesn't know what else to try as we have tried many medications to no avail. All I want is to dial it all down a bit, I don't expect to be pain free just want it managed but thus far its not. Sometimes all the symptoms are in overdrive and it so fecking overwhelming end up having a meltdown. After the meltdown I slowly put myself back together and get on with life until the next time. But let me tell you when I'm having my meltdown down if someone told me to be positive I think I would end up with a night in the cells 😉🤣. I'm not going to tell you how to feel or what to do. All I'm going to say to you is this... you are right, fibromyalgia sucks big time. You do feel let down by the lack of understanding but then i think how can you fully understand something unless you are going through it. Its difficult because, yes there are medications etc that help some but not others as all bodies are different. I get it, I understand how you are feeling without judgement or feeling the need to give you advice or tell you how to feel. After 26 years of this struggle i think you've got that covered. I really do hope there are advances in fibromyalgia research that sheds more light on it and creates development of more treatment options. Take care and I hope you get some relief soon. P.s if you what to have a rant, rant!! This should be a safe space for you to do that. There are also other support platforms where you can get all your thought and feeling out which is sooo helpful. I found my Canadian email pal on one and we offload to each other often, HUGE help to me and her, stops my brain exploding 🤯😉.
It's not so much about ranting 😡 it's just truly expressing how one feels inside with the pain.
I was seeing a private paid consultant pain expert,who told me we are along way away from any possible cure etc,he reckons it won't be to the mid 22nd century before any kind of cure maybe found 😔,so along way off indeed.
Off to the pain management course again next week 😔 which isn't working for me at all.
I'm stuck with 6 other women who just keep asking if they can qualify for pip tut, personally they should just phone up the DWP & save time.
One woman there wants to get back to doing judo 😂 some chance not.
"One woman there wants to get back to doing judo 😂 some chance not."
You should save your negativity for yourself, not other people.
I did Jujitsu for years and, whilst realistically, I will probably never get back to fighting again I do practice Tai Chi, when I can, and tentatively do some Aikido training, though my Bo staff doubles up as a walking stick these days.
Judo isn't all about throwing people around the mat. It is about using your opponent's strength against them.
The exercises and training are more akin to yoga than street fighting.
If she turns up and tells her trainer her limitations then she will be given exercises that are within her capabilities...Though she may find herself too healthy to qualify for PIP.
Maybe the experts don’t study fibromyalgia because luckily it’s not fatal or terminal. I am ok with these intelligent folk studying cancer, dementia and MND for example. These are far more cruel.
The pain isn’t the same as some cancers, we don’t have to endure chemotherapy, we don’t lose our hair, we don’t have our immunity decimated. We don’t go so vanished in the head like dementia and go missing or become violent that our families become scared of us. put it into perspective
Hello... I know you are not ranting just saying if you want to rant you should be able to but I'm noticing more on this group that people are quick to poo poo people's opinions or question them in a negative way (are they medical professionals??? Probably not!! ) which is funny as its meant to be a supportive platform... go figure🤔🤔🤔. Anyhoooooo. It's very frustrating and very real. TBH it's not so much a cure I focus on although that would be amazing, I would just like to fund a treatment plan that worked to dial it all down, know what I mean. Life would be alot earlier if it wasn't so all overwhelming.
Judo... life goals huh lol. I would need a tin of oil as I like the tinman just now. I do fancy trying tai chi though. Every time I try some stretching I end up mega sore then next day but thats because I can't pace myself I push to far 🤦♀️.
Well hopefully there will be something of interest or beneficial at the pain management course🙏. Just keep on trucking ☺️.
hi, I totally 1000000000% get you! I’m a novice 8yrs (under my belt) I sympathise with where you’re at. It’s horrific, I have more days than not I’ve given up. I hear you with the IBS I find it right up at the top of debilitating symptoms it consumes you. I just wanted to reach out let you know I hear you and I feel it too. Take care and please don’t give up
Thankyou from the heart Ali 🤗It's the bad stomachs I feel hard to swallow.
Dr,s say breathe in & out & relax when your in pain,lot of good that does NOT 😡.
I'm afraid I'm not a 🐑 sheep & I don't follow on why other people with fibromyalgia get so aggressive when others state a valid point.
Oh the latest pain relief I was told last week was look at a bowl of fruit for 20 mins and imagine what it smells & Taste like,for god sake please 😂 😂 😂 😂
I've never been to pain relief and if that's what they suggest I dread to think what my reply would be. Don't you sometimes wish these people could feel the pain of fibro just for one day. See what they'd think of their bowl of fruit theory then.
Don’t get me started! Have you had the misfortune to view pain & the beast video? I literally laughed out loud (for real) when she played it. I do get the whole anxious/ relaxation correlation but the pain management program cld be explained in one session! Like you I feel like giving up most days, I used to run my own business and now most days I’m patting myself on the back for getting out of bed and showering! Don’t give up. Take care
What does "giving up" mean. It's not in my vocabulary. When I was first diagnosed I cried, I shouted and I swore. I had brought up 3 children on my own and didn't know how to pace myself. I fought for benefits and had the humiliation of DWP when nobody would give me a job at the age of 62 especially when I was actually signed off sick. Now I'm retired, have more health issues on top of fibro and live each day as it comes. I might be back in a wheelchair tomorrow but today I can enjoy my lunch, go for a little walk and thank God I am alive. Give up --- never.
I am also struggling at the moment, but the thing I've found that makes the most difference to me is music. I can take painkillers and sometimes they help, sometimes they don't, but if I start the day by putting on my 'Moving' playlist and putting in my earbuds, I can manage to get my day started and I have a better day. I only listen to quite gentle music but with a decent beat - I find Capital Chill has a lot of the right sort of stuff, but it will be different for everyone. I think the music directs my brain's attention away from how I'm feeling, and gives it something else to focus on, as well as making me want to move even if just a little.
(This might be longer that you expect, but read, please. It took a lot of my energy to write what follows, because I connected to much pf what you said and hope this might be of help)
First I want to say how much I empathise with every word you say. I admire how clearly you explain your reasoning, and justify your conclusions. Even if I beg to differ on "giving up." Facing some reality is very, very hard but sometimes we need to come to terms with certain facts just in order to adjust our life and find way new ways of coping, coming to terms with it. Creating the right conditions to carry on. This is quite individual for each one of us, according to our circumstances.
In my case, even getting a diagnosis for fibromyalgia took me years (this was at the NHS Lupus Clinic). I knew nothing about fibromyalgia, but was told that not much can be done to make it better, apart from gradual short doses of exercise, between periods of resting (due to fatigue that comes with fibro). "Luckily" for me I could not afford private medical care, because I would also try the private route. and waste time and money seeking answers which would give me back my life, instead I have tried the easy exercise regime.
(By then, I was also plagued by chronic migraine for years, and went through a range of patronising and wrong medical advice, so should know better: namely that medical care has limits, but still I was prepared to try and do my best.)
When I tried do follow the gradual exercise I have soon discovered that, however gentle. any exercise made me feel much worse, never better or stronger. Even 5 min walk, left me utterly drained so it was impossible to function for the rest of the day. Now, any little energy that I have, I need to use for my basic survival skills, ( i have no help of any kind) like washing, cooking simple meals etc.
Still, the myth of gradual exercises persists . Then few years ago a wonderful, honest new woman GP told me that: she agreed about that gradual exercise seldom gives any improvement, if ever, and that at present medical profession has no answer to how to treat fibromyalgia.
She even went to the trouble of going to special seminars on the subject, just in order to be of help , to check on new developments. There are not any, at present. So I had to accept that I will not have a "cure" but I have gained a peace of mind, and stopped wasting my time waiting, and reorganised my life, accordingly. I still try to exercise in my beautiful countryside, but only on my better days, (which are rare), i hardly ever socialise, I openly let people who matter know about my reality, true friends and family accepted, the rest I ignore (not easy at times, it is painful).
I am not offering solution just a tip, that I discovered and find extremely helpful. But check with your GP before trying. this really made huge difference to my day. Each morning, aching and stiff moaning all the way, I get myself to my bath filled quite full with very warm water , and decent solution of Epsom Salts or (other similar health salts, I cannot use names here) to little less concentration than on packets, and stay in for few minutes, after that time I begin some gentle leg movements, and any other gentle exercises that feel safe and gentle just to keep blood circulation going. If you are not keen on salts, do it without it, but be submerged in warm water. This really easiest that morning pain a lot, for me, so I can start my day.
My life is ruled by listening to my body and do, or not, what it tells me. It was a hard lesson.
I am glad to be alive watching my family, i take pleasure in smallest things, like snowdrops at the moment. Occasionally, I symbolically "kick the cat" no, not the real thing, in frustration. At times I have bad days, of course i do, but I am still here.
You sound resourceful and highly intelligent Fibroguy 66, and you will find your way. I wish that you have more better days, more often, and that once you come to terms with the fact that your life has changed , I believe that you will find your own way of coping that suits you best. And keep visiting here. But do NOT give up. That would be such a waste, you sound great.
15yrs and i could have written your comments. Opiates do work a little for me in that they reduce daily pain from a brutal 7/8 out of 10 to manageable 4/5. However, no cure, getting slowly worse, no light at the end of the tunnel, medical profession absolutely useless providing nothing but a prescription each month.
Stay strong my friend. Or like me try and be a belligerent fecker and refuse to go quietly.
Please dont give up we all have really bad days and can relate. Im attending a funeral next week, a lovely lady much younger than me. Reminds me how lucky I am to lead somewhat of a productive life, with the support of family and friends, albeit whilst predominately being in pain. Seeing the positive aspects in life and being grateful helps see things through a different lens.
if I ever feel like that it’s always because I didnt stick to what I know works for me, and as long as I go back to what works then it gets better, life is not pain free but it’s well manageable if I do all the things I have learned that work for me, and most of the other symptoms are no longer a problem.
Two last things to try before you do settle into acceptance (although actually acceptance is the key as it reduces stress). I bought a vagus nerve stimulator more in hope than expectation. But it has worked. Doing more research on the vagus nerve it is implicated in so many of the symptoms we’re all experiencing, from skin sensitivity to IBS. Not cheap but has helped me so much. Other thing is that I’ve recently moved from living at 600m altitude to 50m and my symptoms have almost dusappeared. It seems mine were low pressure aggravated. So if you can find high pressure oxygen treatments, it’s worth a try.
I feel you, I've been feeling this way for the last few months, I quite literally give up, this is no way to live! If it wasn't for my children, I wouldn't be here
I totally agree with you , pain management classes , really ? If you havnt got it , You Don’t Know ! I wouldn’t wish it upon anyone but please research , read & remember it is chronic pain 24/7 no medication can cure it , no exercise can cure it , no amount of classes can cure it , no one can cure it . Just have to live with it & try tell as many people as possible that our life is not like theirs , our life is no way normal , our life has many daily hurdles & sometimes we stumble & need time to rest because our bodies just don’t work like theirs …. It’s our life now we do what we can to carry on …
My pain is much much worse when I don't exercise. Massage also helps a lot but you need to find a good person. Also, do you have underactive thyroid or are you borderline?
I’m with you too , done all the things you have with no luck nothing helps. I’ve given up too just want to let you know you are not alone with your feelings ❤️
You are welcome I’ve had this 40 years I have spent thousands on trying different things and nothing helps no point in going to doctors or specialists because I know more about it than they do .
Save your money and yes the only person that can help you is you ,you will be the one that finds something that helps not any doctors or crazy therapies if I ever find anything that helps I will defiantly let you know in the meantime one day at a time big hug from one pain to another ❤️
I gave up searching for the miracle cure years ago. Miracle cures, like snake oil are expensive hopium, exotic and enticing to the uninitiated. I didn't give up trying to make sense of fibro. I do think that is the key. We need to look at why Fibro. If we can't cure it at least we should do all we can to prevent it? And maybe if we understood why, we could treat it?
I came across CPTSD the other day and it's role in creating pain. I didn't know what it was so it was fascinating. Worth reading up on.
Years ago Drs would say Fibro is all in the head. It was very insulting. We were hypochondriacs, anxious, attention seeking.
These days I can sort of see why they might have got there, but the head isn't the whole story.
I suspect unresolved pain/fear/trauma gets stuck in the body because we didn't deal with it at the time. Perhaps we had to be brave? When the trauma is long term and chronic, changes occur in the brain. And we can't easily resolve trauma when it is ongoing. Drs don't have an answer for how to deal with CPTSD yet but they do believe regular CBT and the like, is appearing to be unhelpful.
Not feeling supported during traumatic times can cause us problems for the future.
Loads of Fibros have experienced bullying at school or at work, marriage; places not easy to escape from. Most of us were told to suck it up; Were not adequately supported. Maybe we were told to stop making a fuss? It's so common to blame the victim for their weakness. Be Tougher! All this can do damage.
I think getting sick, or injured and the subsequent recovery is another tricky one. It can be traumatising for person, but they are expected to get on with it; Submit to scary painful treatments etc. Adequate emotional support and care is important for our mental wellbeing and for physical recovery. When we go through such stressful challenging times we have to decompress and resolve the pain. Maybe by talking, crying, I don't know?
Did you talk about how you felt dying after your accident? Have you figured how you felt and feel now? Or just about the accident? I'm guessing this was the start of your fibro? It didn't start earlier? That's kinda handy if it is because we don't all get that certainty.
I think the way we tackle fibro from it's symptoms, medicating each one, is wrong. We need to figure what the symptoms are saying. If we are smart it should lead us to a treasure of unresolved issues. If I tell you to 'shut up!' Likely you will be miffed? You might though, if I'm forceful enough, shut up for a bit but later you will say, Darn, Cheek and pipe up again. Fibro Symptoms are like that. They might change it up a bit, but they wont shut up if there is something you need to deal with.
Dunno if this helps? Another avenue to explore, keep you busy? Like I say, experts don't know the answers so, if you find some, it'll be kudos to you. Happy hunting.
If I could find a cure I would definitely share it by far.Did come across something involving two natural chemical compounds but heaven knows at this point how to duplicate them,as the two chemicals only exist in the human body etc.
I cannot say to much due to admin on here and there big brother drone activity.
One compound is available in a duplicate form but it could send the heart rhythm to fast.
The compound is NOT ILLEGAL was not shouting,done that for admin 😂
People on here think I'm stupid but little do they know on my studies & journals etc.
From what I understand you have not been prevented from saying anything on here and had one post removed due to it being a duplicate post in effect which was messaged to you by PM.
Careful about the criticism of admin activity as we are just here as volunteers trying to keep the forum safe. My comments on your posts have either been my opinion or corrections when you were wrong, or coming across as pronouncing what fibromyalgia was.
Feel free to mention the compounds and your research. The gold standard for research are clinical trials and there has been a lot of research. Some of that has benefited our community but as is normal with conditions like ours it often just confirms what is not helpful. The charity has promoted lots of research and are stakeholders in a couple of ongoing trials at present so we are connected with researchers on a regular basis.
I do not think anyone has called you stupid but if anyone does abuse you in any way then please report it and let the team have a look as we have done in the past.
Fibroguy66, I just saw this on facebook memories from a fibromyalgia site. Just thought it may help encourage everyone. We all have our own journey with fibro and all its challenges that it brings into our lives. I read your post earlier and some of the comments people left. As I was reading your post I thought “yep, so true, I understand exactly where you are coming from, been there done that, etc” as I have experienced a lot of the same things you have. This is so hard and gets very discouraging that it can rob us of our quality of life. Been there done that. As several people have pointed out there is more to life than our health (believe me our health is so vital) challenges. I am preaching to myself here, but to find meaning and new purpose in life. That is a new understanding on a level, that a lot of people “don’t get” but helps us in reaching those who are going through the same thing we have. God gives us new found hope, faith and determination to help people living with chronic pain to find fulfilling lives. This is for everyone please don’t ever give up. We are all here for a reason. Sending hugs 🤗 and love 💕 🕊️
Hi Fibroguy66,Unlike you I have limited intelligence unfortunately. I just felt I wanted to say, please don't give up.
My pain isn't constant and tends to come in 3 day spates, prompted by twisting or lifting in the wrong way mainly.
I saw specialists for years before diagnosis, so many strange symptoms.
I realised after an operation last year that the profession really doesn't know how to treat it. I was in agony, in hospital and all they could do was um and ah and keep walking past me.
I hope some answers become available but please stay calm and keep moving onward, I know that stress doesn't help.
I understand everything you have said and I sympathise with all that you say. I’ve been there. It sucks and it’s always with you no matter what you do. However, after 15 years of being totally disabled and unable to do anything because the whole body and mind had been corrupted with pain I decided that only I could help myself. It’s taken years of baby steps, some forward and many backwards but I’ve come to terms with ‘my lot’ in life. Patiently accepting my hardships I power on each day. I take tablets, I use heat lamps, I massage Ketoprofen gel everywhere. I have carers. It’s an endless process but necessary. My biggest breakthrough is my meditation. I’ve been doing it 3 years now. Try headspace, especially Andy’s courses and Buddhism. I also rely on vitamins- vit d, iron, vit b12, vit b1, magnesium and zinc. I also have cold showers to stimulate the Vagus nerve- it was set on sending painful, constant stimuli to the brain, muscles and bones, keeping body on full alert, tense, causing so much anxiety and stress which is very painful, relentless and such a waste of time and your life! All of this has taken me years and years of research with trial and error on everything I read and then tried. It’s up to you to do the same and find out what works for you.
I didn’t realise I was so angry at everyone for not helping my situation and that anger made everything hurt even more. Controlling and pacifying your mind is so important and does work. It takes lots of effort and total commitment but only you can do it. Start today and it will change your whole outlook and experience of life. I wish you tenacity and success!
Hello Fibroguy66. I've only read a few of your replies. All very good and well meaning, but when it's bad it's bad. I'm in my 22nd year of fibro plus conditions I'm not writing them down . I am now 67. I have told my GP that at 70 I am stopping taking all my meds cocktail, and let nature take its course. My Gp said I'll end up worse. Yes I've been sent to talking sessions several times. BUT PAIN does not go away. It's going worse. I fell on Friday 13th December( lol) the pain has ratched up just for the fun of it. I've seen Dr and physio etc still that PAIN doesn't go. Yes I feel that's enough. What I want to do is Run Away. To where nobody knows me. Where the old me can vanish. The new me crippled in pain is now the new me. My GP doesn't understand. I think you will. Take great care. Try to stay posertive , that in itself is sooooo hard.
You do get to the point you've had it with doctors, tests, more tests, alternative practioners, and meds that make you worse or do nothing. It annoys me that "crippled" is an objectionable word. I don't need politically correct. I'm the one living this life. I'll call it what it is.
I agree with you 100% I have had it around sixteen years. Nothing and I mean nothing has helped me and I have also spent a fortune on all sorts of cured etc. It makes my blood boil when I see all these advert selling you false hope. If you are genuinely getting relief from something, well done but for most of us it's all a sales pitch. I hope you like I are only giving up on buying false hopes and not giving up on the big picture.
I have to agree with you, I'm 4 years diagnosed but have struggled for almost a decade.
You are right it seems to be progressive. I feel worse now than when I was first diagnosed. My pain ranges from annoying to a living nightmare.
I've tried everything from relaxation, to gentle exercise, different tablets, CBT, nothing works.
Doctors are a waste of time beyond backing me up against work. After a really bad flare up I messaged my doctors, forget ringing, a 45 minute wait to be told try again tomorrow.
Anyway they got in touch, sent me for bloodtests (again) and I waited for the results. They came back mostly fine, low vitamin D again., but other than that nothing. The doctor said everything is fine, literally didn't give a toss about trying to help me manage my symptoms.
It's difficult to have hope when you face this every day.
I know everyone's story is different, some people find things that help and I love that. Unfortunately despite years of trying I haven't been so lucky
Lady luck is definitely not on my side either.Totally relate to what your saying about doctors etc.
I've spent mega bucks with the private sector who after sucking you dry of a grand tell you,there's no cure for fibromyalgia no wonder most of them drive Porsche & high end motors.
I'm well fed up with being treated like a dipstick actually.
Fibromyalgia is progressive because if your pain increases to the point it's ahhhhh then that means it's getting worse hence progressive.
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.
And whole heartedly agree with with paying for the exertions if you like doing it.
HAS FIBROMYALGIA HAD A NAME CHANGE.
Opiods for Fibromyalgia 
Newly diagnosed with fibromyalgia but prob had it for years
