What mean things have your doctors or healthcare service provider said to you? I was diagnosed with CFS/ME in 2001.
Recently I had a male GP tell me that he was reducing down my opioids and I "would just have to learn to live with the pain"! Excuse me? What?? I had also mentioned that due to nerve damage in my back getting worse and the numb patch gotten larger that the pain radiates down to my lower back and has been causing me (on a few occasions) to lose control of my bladder. I'm only 44 years old. To which he replied "That's not relevant". I was so upset and in tears for days. The whole 3 minute call was rushed. He spoke over me and didn't actually ask me anything. The callback had been in the book as I was due a GP review and had booked it 3 weeks previously. I thought he would at least ask me how I was doing. How wrong I was and I was reminded that this is what we all (invisible illness warriors) have to deal with day in and out with these people. That's my rant over. Gentle hugs to you all xxx
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Brighteyedbabe78
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would contact the surgery ask to speak to someone who understands the condition, move forward that way.
my 1st rhummy laughed at me at every appointment had no clue to my issue, yet my gp said was text book ... the letters made no sense to gp either, so asked for a second opinion, that meant travelling out of area, it was gruelling painfully / exhausting so many bumpy roads. the gentleman knew what was wrong and we began, sadly am still suffering at least they tried and did not laugh!
There are some right twats out there masquerading as medical healthcare Practitioners. I think that we've all experienced this type of nonchalant and uncaring attitude. So sorry to hear of your experience and how it did affect you days after. One word for you - Karma. What goes around comes around.
I've had similar comments made by health professionals that I maybe wouldn't say is due to them being mean but more that they could be more understanding and worded or better
Research has shown that many meds do not help chronic /persistent pain and self management of symptoms has an important part to play. Yes, there is an aspect of 'learning to live with it' but how this is put across is very important
When you are in intense pain, being told to learn to live with it is not helpful - but a health professional listening and explaining chronic pain and ways you can manage it and learn coping techniques can come across completely different
If you are losing control of your bladder, I would suggest making another appointment (with a different gp if possible) as this is something that should be checked out and can often be treated
I've recently had a series of appointments with an NHS Physio who has helped me a huge amount and I've done the pain management course. All very good and helping me get pain free without drugs. I would not have believed it a few months ago.
I went to a pill clinic review, said I didn’t want to be weighed because of a previous eating disorder. I was pure muscle with a 24 inch waist (from working on a farm and walking at least 20km a day) and they tried to get me to agree to go on a weight loss course because my BMI was over 27; after I told them not to disclose my weight to me they made a big deal out of how surprised they were at all the weight I’d put on just as I was starting to get comfortable with my muscular physique. Believe me, people were asking for my gym routine at the time. I left crying and the nurse decided to add to my record that I also looked and smelled unkempt. They said I was fat… look at the pictures!!!
Young woman showing muscular back and large trapezius
Definitely not overweight! Ignore them darling .... Last time I was told that it would be a good idea to drop some weight (like you, I was barely out of Normal BMI) it was by two nurses who looked like rugby backs - one needed about 70lbs off and the other about 40lbs.
However, we are going to see this happening more often as solutions to problems with the NHS are (sad to say quite rightly) going to be placed at the door of the smokers, drinkers, illegal drug takers, and obese. About four months ago, I attended a conference and one of the speakers said that if the problems caused by these self-inflicted illnesses were removed then surgery waiting lists would be no more than a week.
Can we please remember to be sympathetic to all with illnesses. "Self inflicted illnesses" is just othering and unhelpful. Where does it stop... type 2 diabetes, heart disease, copd? We hate when others judge us for our invisible illness and not getting what we are really going through so doing it to others and minimising their situations is not helpful.
I was quoting what the speaker had said at the conference and NOT making my own personal feelings known. Second time that you have jumped at me erroneously.
I was sexually abused by my half brother as child mentally abused by my mother and physically abused by my father I’m in recovery after 29 yrs heroin and crack habit there’s many reasons ppl self proscribe it not all about having a jolly day and getting smashed there seem to unconscious thinking by a lot of ppl especially medical staff that drug addicts are just pieces of s**t I’ve experienced it many times in the NHS it’s not right.
What would they have said to and about Schwarzenegger? I'm sure his BMI was/is out of range. The impertinence and callousness of these people makes me want to throw up. Even if they were right at times, as healthcare professionals they should be looking after people's health. That includes emotional and mental health. Nobody should ever be leaving a surgery crying because of the healthcare provider's insensitivity (or ignorance). What has been done to you is not conducive to promoting health at all. Never take a healthcare professional's comment at face value, let alone personal. Power corrupts and many are on very high horses. I'm sure 90% of people who deal with them on a regular basis have horrific stories to tell. You are a valuable person and deserve to be treated with respect. Shame on them!
I had all understanding GPS apart from a male doctor he was not nice about the situation . I explained when I have the flare up I'm paralysed my leg or arms will not move. I can't even force it. So now I video on my phone to prove this.I had asked for a note for work he said. It's not like you have had a car crash ! I thought that was disgusting.
This male GP, is he ur assigned GP or a locum or new doctor that's doing a 13 week stint ?
If he isn't ur assigned GP, then ask to speak to ur own GP & if they won't do that raise hell & if ur pain meds have been reduced benefit, phone the surgery everyday to complain that the pain seems greater & then if need be put in a complaint about the GP that thought he knows ur pain better than U do.
Don't give up on urself & fight for the correct dosage of meds.
My surgery's pharmacist called me up & wanted to swap my morphine for fentynl patches, I said OK & she booked me a phone consult with my GP & when he called me I told him what she said & my GP said no, I want U to stay on the morphine .
Ask to speak to ur own GP & hopefully they will put ur meds back to as they were.
I really don't understand this concept that you can't be left in pain? There are millions of people that have chronic, incurable, untreatable pain, that have to live with it their whole lives. I don't see why we can't all have grown up conversations about these facts. Don't get me wrong I really don't like doctors and agree they could really do with trying to be a bit kinder but many of us have to come to terms with these realilities.
I've been through years and years of this. Done physio, CBT, get, and many other things. Ive tried many medications etc and am now finally where i can still function day to day. This Dr has tried repeatedly to take medications off me and basically leaves me bedridden. He doesn't believe in ME or fibromyalgia. He is the one in need of a grown up conversation on the facts and should maybe follow NICE guidlines.
desquinnPartnerVolunteerFMAUK Trustee• in reply tofmlife
Some meds do not work for people. Eg.30% of the population have genes that means that codeine needs will not work. But others will. This is party of the reason we have so many meds as we are so complex
Sorry to interrupt but are U talking about NICE, the same people who deny people medications that would help them to fight cancer. All nice want is the cheapest of anything & even then they select which postcodes get certain meds & those that don't. That's torture not only for the sufferer but their loved ones who are seeing their loved one disappear before their eyes.For my chronic pain my GP has tried every drug in the spectrum to help with the pain & we are now at the final point where after morphine tablets for my chronic pain & even that is becoming less effective which will mean in the end I will have nothing but my pain & I won't be able to walk even with crutches as I do now. I trust my GP over NICE anyway as my doctor can tell U everything about me, where as NICE will only spout out the cost.
The debate about how effective NICE is a separate topic. NICE was brought up by the OP and therefore became part of the commentary.Pain relief for fibromyalgia patients is again a different discussion. There are a great many fibro sufferers for whom pain relief is ineffective to the degree that it has become symptom of the disease and an indicator that it is fibro you have. Huge amounts of fibro sufferers are on no medication for this reason. Pain is not always inescapable, that is part of the human condition whoever you want to blame.
I am being denied treatment by the NHS for a different condition I have, I am no apologist for the NHS. But I do think that one has to accept that GP's are not able to cure fibromyalgia and that means pain. It is not helpful for patients to waste the little energy they have left directing anger at NHS when what they really need to do is attempt to come to terms with the distress that having a lifelong, incurable, chronically painful disease gives you.
That is not to say that no one can helped by medication and we should expect GP's to give us a fair crack at what is out there but once they have been tried and failed being angry at a GP is futile.
Again I don't like or trust anyone that can say what a life is worth!! Yes we can't throw the entire public purse at looking to make the lives of people completely better as we simply don't have that much money, however I question every government we have that doesn't seem to want a state sponsored pharmaceutical organisation that works on the medicines that can help those who are ill here & in poorer countries that can't afford to pay for healthcare. Imagine the good that could be done for us in the UK & again poorer countries & we can even sell drugs to the USA & others that can afford to pay & that way every avenue is looked at. I hear U when U say ur being denied & me I'm one of those that every other pain med I took didn't actually work for me until I was placed on morphine tablets but now they're only about 60% effective & that is better than nothing but I also know that when the pain is too much I will ensure up in a chair unable to walk. I'm already on crutches & have been for over 10 years but that constant pain never goes away even when I'm trying to sleep its always there ready to wake me up. I know what's coming & have accepted it as its my future & nothing can be done but what little relief is there for people should be left in place & if 1 medicine doesn't work then a GP should move them to the next one in the group of meds, it's what my GP did & when we got to morphine he told me that there is nothing after this that will stop any pain & that's ok with me.
I'm sorry ur being denied medication that could help U lead & have a better life but its things like NICE that deem one can but someone else can't. They shouldn't be allowed to dictate who gets treatment & who doesn't.
Hello. Sorry to read of your experience, we have a Female Practioner nurse at our surgery and I find I go threw her now as she is very understanding and willing too help, do you know if you have one at your surgery? As they can do most things , referrals, prescriptions. Our surgery seems like most these days never the same doctor and short staffed, I agree with Hazel differently see someone else and get with your bladder control as this is ongoing and you differently need some help in this area. As for your awful experience with this doctor I give him a wide berth and ask too see someone else, when someone actually has too walk in someone’s shoes do they get what it’s like day too day and some medical professional still seem not too be glued up on Fibro , or brush it off, I think a lot of us have been down this road feeling upset and fobbed off. I eventually saw a different doctor at my surgery and he was brilliant but took so long too be heard by the right person , keep at it ,let us know how you get on and sending hugs xx
I like U have a great GP who understands my aches & pains & in turn I understand when it comes to the cost of meds to the surgery & their funding. We have a conversation about my meds regularly & throughout the years I've always mentioned to him let's see if the cheapest is the best & it's only by going that route I ended up on morphine tablets & the pharmacist at the surgery wanted to move me off morphine & set up a call for me & my GP & as soon as I told him of the call with pharmacist & I was open to it if he agreed & within seconds he said no I want U to stay on the current meds & for me that's what is needed from every GP.
I have been told I have it & it was put down to the major emergency surgery i had in 2008 & after i didnt have an easy recovery either almost anything that could go against a person happened with me .
I suffer from chronic lower back pain bought on by the fact I am unable to sit upright due to scar tissue above my diaphragm, so if I sit upright I wany to be sick & short version I had major surgery & complications after & since then it's gotten worse. My GP tried me on every pain killer that he can prescribe & we finally ended on morphine to help with the constant chronic pain & duloxetine was supposed to be for pain but I found it helps with my mental health & helping my brain.
I still suffer from what I describe as pins & needles that are like electric shocks but on a minor scale though.
I have a plethora of medication I take daily as I'm type 2 diabetic , BP issues & too stubborn to stop using my crutches as my thinking has me convinced I can walk normal again but the truth is I know I won't & due to the lack of mobility I'm unable to do the 1 thing the medical profession want me to do & that I'd exercise.
Now my local health authority are trying a different approach & that is to work with the mind of the people who suffer than just focus on the pain only.
Hi ,No not rambling at all lol Thank you very much for replying to my query. I only asked because I found it strange a GP would give morphine for fibro pain alone. In the past I have been offered it and refused. But it was for other pain and not the fibro pain.
I am a wheel chair user and found it very very difficult to come to terms with it. I have to use it when ever I need to leave the home and still feel very awkward having to be pushed about. My garden is my walking limitation . So i understand your reluctance about the wheel chair.
I was 42 when the chair was brought in to my home and i'm now 66 and for the first 2 years I would not even leave my home . But time can be a good thing still hate it but it serves a good purpose. It gets me from A to B with the help of my hubby. And I can tell you there is life after the wheelchair lol just like there is life after fibro
hello there👋 that’s awful. I don’t want to alarm you but, you should definitely get a face to face with someone else. I had similar with sciatic nerve problems and have been told by GP if any bladder issues contact them immediately. Good luck
I have been having trouble with my GP as well. I have just put a complaint in to the practice manager and am waiting a response about that. But I was taking off my pain meds tramadol and given paracetamol also taken off my sleeping pills and was told the surgery are just not prescribing them anymore and paracetamol is a strong enough pain killer (believe me it's not) am struggling to get out of bed cause it hurts so much to move, my GP was so un-empathic, didn't care and refused to listen after that consultation I felt like I was a burden and to be honest all I wanted to do was kill myself but now am just angry I shouldn'tbe made to feel this way by someoneof took an oath that part of it is '1st do not harm'. I am only waiting a week then if I get no reply am changing my doctor surgery completely.
So sorry you felt this way, and I would most certainly be asking to see someone else. We all understand that a cure doesn't exist, but a little care while we battle to find something that does work shouldn't be asking too much surely? Take care hun, and please don't let their ignorance impact you this way.
Very similar to my experiences with this certain GP. I'm made to feel like a drug seeker when I'm only asking for something to take the edge off which my meds do. I am still in pain even with them and he keeps trying to get me off them. He took me off my tramadol also but didn't replace it with anything. One day at a time eh? Gentle hugs
Have experiences all sorts of ignorance by doctors over the years , had a few state to me;
" nothing to worry about no one has ever died from having fibromyalgia " ! , err well tell that to all the families who have had someone take there life because of fibro or all those that have died from medications / drugs or accidents from poor concentration or Capita pip abuse ! etc etc due to fibro
I've always been told by GPs that opioids would be no good for me as my body would just get use to them and stop working eventually take paracetamol and try and deal with it. Would these so called professionals treat their patients in this way if the NHS was scraped and privatised like America. I think more people would take legal action against these incompetent aragent so called professionals
I wonder if it would help Fibros to know most GPs truly are past caring about their patients, esp the ones that whinge and wont get better? I suspect many GP's suffer from Compassion fatigue and really can't care less. The job really is that taxing. There is next to nothing Drs can do to relieve Fibro pain, yet we Fibros keep going back begging for help. You have to ask yourself, how does it feel to be able to offer nothing helpful to someone in need? And if you do offer something, knowing it's probably going to further damage the patient with side effects etc. over time. And maybe not a lot of time! So many Fibros are drug damaged whether they realise it or not. That is really sad because they end up suffering more than they needed to.
Rock and a hard place come to mind. On top of there being no effective treatments, the mess the NHS is in and the myriad of nonsensical protocols Drs are forced to follow, I think it's no wonder GP's have little patience. Those that still care must be very special people and must be treasured and appreciated.
The one thing that could most help fibros is to understand, there is no effective treatment or cure, The best any Fibro can do is figure what works for them and get straight in their heads the reality of fibro. Once we accept medicine has no actual answers, we can start figuring how we can make the best of our lives. At that point we are no longer dependent, giving our power away, we instead can be proactive and brave. Accepting what is and then figuring how we live well. And many fibros do figure this out. All by their very own selves which is a really positive thing.
I think there are lots of things out there in internet land that may help certain aspects of a persons fibro. All is not lost. But your GP and NHS providers are seldom going to be the ones to come up with those answers. They don't even have time to listen, never mind join the dots and understand. Honestly, I think the NHS are too tied by following protocols to be the ones to come up with new answers. Who in the NHS is allowed to just dream up a helpful protocol to help a poor desperate fibro? Who would dare defy NICE guidelines which tell Drs what they can and can't do?
Dunno if this is helpful but understanding this was the one thing that helped me when I was desperate, going to the NHS pleading for help. It was like the penny dropped and the light came on. Finally, I could stop trying to get the the Wizard of Oz who would miraculously have all the answers. Finally, broken as I felt, I was the boss of my life. Amazing!
Beautiful & poignant words & so very true & U smashed that nail in 1 too by saying we all need to accept the pain is what it is & we all need to adjust the way we think & how we do things to best suit ourselves is very important toward accepting that in the end there is no cure & the medication ( bless every single one of them too ) will only help us to a certain extent. Me I'm at the final stage of pain meds by way if morphine tablets but they're only about 60% effective & so I know I'm in constant pain & I also know my final place will be in a wheelchair as I won't be able to walk anymore, I'm already on crutches to be able to walk & I've accepted my truth.
I've been on the journey & I'm still on my journey to learn things & it was hard but I did adjust my mind set & I do make things work for me & if I don't want to do something I don't force it but if I do want to do something I make sure I'm rested & able to enjoy life as limited as it is. I've learned to be happy with me only or others in a gathering. Either way it's my choice as it's still my life.
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