What stops you from discussing your pain condition with family, friends and/or healthcare professionals?

[PainConcernProjects]

Please comment below:

[cyberbarn]

Nothing stops me from discussing my pain condition with my family and friends, but what stops me from discussing things with healthcare professionals is their inability to listen. When you don't feel listened to, you stop talking.

[Morganalefaye in reply to cyberbarn]

I agree, but I also think that sometimes they’ve just done all they can. Maybe age also comes into it? I think they’re perhaps less interested in the multiple problems of the older individual.

[DENZ01 in reply to Morganalefaye]

My mother would agree with you, but I'm only 53! Is that considered "the older individual "? 🤔 I certainly feel about 20 years older than 53 😬😬

Remember, I'm feeling very unwell at the moment, don't add insult to injury 🤣🤣🤣🤣 (the last bit is light-hearted 😉)

[Morganalefaye in reply to DENZ01]

Good Heavens, you’re a baby! I’ve got children older than you! Mind you I’ve been a wreck since I was about twenty-five. I definitely noticed that the medical fraternity begin to glaze over when you pass a certain age though. Of course it could be that healthcare isn’t what it used to be?

[DENZ01 in reply to Morganalefaye]

Phew, thanks for letting me know that you weren't adding insult to injury 😂😂I've been a wreck since I was born but started with real problems when I was 15 & downhill from there!

I think that it's 100% the medical profession that has changed (my opinion 🤔) who could have guessed that we would be diagnosed via a telephone call nowadays 🤦

[Morganalefaye in reply to DENZ01]

At least for my generation, we had the best of the NHS. I was pretty well looked after for most of my life. I really noticed the decline beginning about 2000. The NHS today tries to be all things to all men. Too many people wanting too much.

[DENZ01 in reply to Morganalefaye]

I couldn't agree with you more.The NHS doing procedures that are not really the main priorities for the NHS.

Doing plastic surgery to make people feel better about themselves (I agree with cosmetic surgery for REAL issues)

Everyone needs to have "something" that HAS to be fixed by the NHS!

It has gotten totally out of hand and now we are all struggling with real health issues and getting nowhere except the back of the waiting list!

I mean absolutely no offence to anyone, this is my own personal view on the problems we are facing with the NHS.

[Joe_D in reply to DENZ01]

Can't say things are a whole lot better here in the US.

[L5s1frozen in reply to Morganalefaye]

That's outrageous and completely unethical regardless of a****** gender race or whatever doctors make an oath that the patient is their first priority so it should not be even considered in this matter how dare you

[Nothing_but_books in reply to Morganalefaye]

I was in my 40s when a doctor misdiagnosed extreme shoulder pain as "That's what happens when you get older." A physical therapist told me I had the worst frozen shoulder she had ever seen.

[Nothing_but_books in reply to cyberbarn]

I absolutely second this.

[DENZ01]

Nothing stops me from discussing the different pain that I have for my various disabilities. However, as for health care professionals (pain clinics included) I get so tired and bored to tears by having to keep telling them that the pain is not under control in any way, shape, form or matter that I've started to believe that they actually do not care.

I can tell my family about the pain, they can try to make me comfortable & do as much as possible for me, but I an in pain!

I am currently in absolute agony with a screw that was placed in my neck is now loose, but I have just been left to deal with this by the NHS alone! I have told many of the "health care professionals" that it is inhumane, but I am still waiting for the pain clinic to "get back to me" 🙄 I already take numerous opioids & other prescription medication.

So now I have retreated into myself. I just can't believe how absolutely awful the NHS is treating me & I have become reclusive & I actually don't want to talk about the pain anymore! My family can see & hear that I'm in pain but they cannot take the pain away!

I am very tired of being in pain, I need help, but the bureaucracy of the NHS is stopping me from me being verbal and becoming a recluse.

If you have read this, thank you 😊.

[lazylass in reply to DENZ01]

I completely relate to this. However, a relative told me today to be more positive and to contact my GP again, even though I’ve told her that during last months telephone consultation for dihydrocodeine my GP said she had changed her mind on February’s treatment plan and has now stopped my 30mg dihydrocodeine tablets. During 14 years of poor health I’ve experienced interacting with many GPS, physiotherapists, gastroenterologists, pain clinic & neurolgy. Family don’t seem to understand that sometimes the medical treatment I’ve received was detrimental to my health and since then I’ve been on the merry round of a myriad diagnostic tests which only add to physical pain without any positive resolution 🤷🏻‍♀️

I want to wish everyone a Happy Easter 🐣 ⛪️

[DENZ01 in reply to lazylass]

Hello It's madness isn't it? I totally understand what you mean about family members/friends who tell you to "be more positive" 😬😬 bit difficult when you just feel like either sitting & crying or just screaming or both actually!

Doctors messing about with meds is another rather irritant! But we are at their mercy 🥺 & that REALLY, REALLY gets to me, some days I want to ask if they actually understand & that I'm not a junkie! But, if you did something like that then they'll waste NHS money referring to psychiatry 🤷‍♀️.

So, I totally understand where you're coming from. Any time you want to chat then I'm here if you want chat or vent 😊

Happy Easter 🐣 to you & everyone else 🐣

Best wishes ✨️

Karen x

[lazylass in reply to DENZ01]

Hi Karen, thank you for replying. It certainly seems madness to me too 😀. Wishing you a happy Easter, Jo

[DENZ01 in reply to lazylass]

Hello Jo, How are you doing this week? Hope that you have sorted some proper pain control out with your GP.

Just thought that I'd drop you a quick note to let you know that you're in my thoughts 😊

Best wishes🪻✨️

Karen x

[lazylass in reply to DENZ01]

Hi Karen, thanks for thinking of me. No, unfortunately the GP has decided that dihydrocodeine is ineffective for me despite it being the only pain meds I can tolerate. So, I’ve been drastically reducing my pills until I will shortly run out. It Seems they are being instructed to remove long standing patients from pain relief 🙄Unfortunately my restless legs syndrome has now returned with a vengeance as the dihydrocodeine (which is for a different problem) was masking the RLS pain. Any ho, wishing you well, Jo

[DENZ01 in reply to lazylass]

Oh dear Jo, I am sorry that you're struggling!These GP's think they're so clever don't they? Well, I know that they are clever enough to be a GP but they're still just people like you 🤦 it drives me insane the way they carry on with themselves!

Have you been referred to a pain clinic?

Keep on at the GP, don't let them get you down!

If you want to chat or shout, please feel free to chat/shout at me.

Best wishes ✨️

Karen

[lazylass in reply to DENZ01]

thank you Karen. I was previously under the care of the pain clinic in 2018/2019, but the consultant doesn’t prescribe pain meds. So it just seems I’m at the end of the road and I will just have to adjust again. I’ve been in this position previously, it’s just my health & pain management seems much worse now in 2023. Hope you are coping okay and thank you for taking the time to converse 🙏 Jo

[L5s1frozen in reply to DENZ01]

I'm so sorry that you're going through all of this I can't even imagine I'm sending lots of love prayers and good Juju for healing your way from the United States I understand that this is a platform from UK but I have been on this platform for years it's very helpful and you are correct at some point we do get sick of talking about our pain because there seems like nobody gives a s*** anyway we can talk and talk but they're really there's no cure they don't want to give us meds because they're addictive the other stuff makes our stomach hurt there really is really nothing I wish that massage therapy was part of insurance there's lots of things that should be covered by Insurance Chiropractic Care here in the United States they do not I think that mostly preventative care would be a big help however we don't do anything here until everything falls apart and by then it's just too late I wish you nothing but the best I'll be praying for you chronic pain sufferers live a hell that nobody will understand until they live at themselves blessings to you love and light Godspeed

[Joe_D]

Same as above, I have had ENOUGH of trying to discuss this with healthcare workers who will not or can not listen! And do not discuss with my family mostly because of embarrassment actually.

[DENZ01 in reply to Joe_D]

Hello 😊I'm very sorry that you're struggling with your health care people 😔 it's just not good enough anymore is it?

But, why are you embarrassed to discuss your pain with family/friends? (Obviously, you don't have to answer me, I understand)

If you need to chat, just send a message, I will always listen (sometimes, it's easier to write to it down & send it to someone who has some sort of understanding, and I promise you that I'm definitely not being nosey!)

Best wishes ✨️

Karen

[Joe_D in reply to DENZ01]

Karen, thank you! You're right, it's not good enough any more. I sent you a chat message.

[Joe_D in reply to DENZ01]

Karen, actually, I would appreciate someone to chat with!

[DENZ01 in reply to Joe_D]

I have sent you a message

[L5s1frozen in reply to DENZ01]

Karen you are so right I know personally for me is tough to discuss my situation because I'm tired of talking about it there's nothing anybody can do my friends and family see the struggle I go through just yesterday I flushed the toilet and almost fell to the floor I don't understand it my doctor's don't understand it it's crazy and I'm tired of talking about it everybody knows that I'm in pain but you are correct in the fact that we have this platform to talk to each other and we can relate to some extent I thought that your reply was very nice and sensitive and well equipped with the fact that sometimes writing it down and sending it out to somebody who can get it takes the burden off of us even if it's just for a moment what a great response and great advice what a sweet thing

[DENZ01 in reply to L5s1frozen]

Thank you very much for your kind reply. I am very sorry that you're also "in the struggle". It can be a very lonely place.

[antbeech1963]

Hi when my pain first started i was in my mid thirties and pains just started in my shoulder.i saw a physio for the thirst time early 90,s .didnt have any problems apart from ashma . then the pain spread back problems shooting pians and then spasms. gradually shooting pains fome my little toe to my little finger.its like electric shockes .so formany years of seeing doctors or physios telling them about my problem but they never realy helped me just said do thies exersises go for walks. so for many years of suffering talking to health prfesionals they did not listhen or take me serously. i had a family to feed so kept working in pain then i was very ill in 2008 .never slept for 2 weeks. my wife got the doctor to visit me he just gave me some tablets waste of time i also had bad headach finaly felt a bit better but hiding it from the kids not showing anything was wrong .so shooting pains through the night waking me up. so going into 2011 just tired all the time i found a lump but did not say anything for a week or so then told the wife.the doctors i saw was brilliant. they said it was cancerouse i had the operation but stoped breathing during it so they managed to remove the cancer but that was just the beginning i was sent for sleep clinic they found polyps that bloocked my airways. so the pains was bad enouth but now another operation to remove polyps. so of corse i am still an out patiant at the cancer ward luckly the sleep clinic was in the same hospital .i was called back into sleep clinic they took an MRI scan after the op to see if it was healing . it was healing well but the bad news was it showed up a tumour under my right eye .so i was sent to see a specialist in the ent.so now we are in 2015 seeing loads of doctors or profesors .my pain got so bad i was just too tired to do anything in 2016 i was told it was to dangerouse to operate. as i could loose my eyesite then i had diabetes .comiing into 2017 i mrt the plastic surgeon who said that he was going to remove the tumour 5 hour op was sucessfull but my tear duc was damaged which now causes other problems watery eye ect. anyway june 2017 i was booked in for treatment in pain clinic heat treatment miled exersise it sort of helped but never stoped the pain.so i am in loads of treatment hospitals. the surgeons and after care was briliant and still is.now i am goin to go back to2014 i spoke to a doctor about my bad headachs mind you the tumour was growing under my eye. he turned round and said its all in my mind. he was right because if he would have said i will send you for an MRI scan the tumour would not have grown into my cheek bone. so they had to drill it all out more seriouse than they thought .and they said if it was found earlyer it might not have been so bad. so talking to some people who are supposed to listhen to your problems just dont listhen i am still getting help but 20 tablets a day to keep me going.i fogot to say in 2005 i was diagnosed with a heart condition Hypertrohic cardiomyopathy. now my 4 kids are old enough to know about it i never showed my pain in 2019 i was sent to talk to employment and support and they help me and i work with them and other in the same boat . i dont need to do to much if in bad pain also i can talk to my support workers about anything. so with fibromyalgia arthrites .wide spred pain.its good to talk but if people dont listhen then it could cost you your life .still ticking over looking forward to my 60th this year. ps sorry about speling .

[momander]

Sadly, most health care professionals just do not listen! They say they want patients to be involved in their own health care plan but it's just a PR exercise as patients thoughts or opinions are disregarded

[Joe_D in reply to momander]

Hi momander! How is your pain today?

[momander in reply to Joe_D]

Hi joe_ D,I've got continuing pain with my back. 2 herniated discs and sciatica, also lots of discomfort ( I wouldn't say pain) recovering from a double cabg. I have good days where I feel very positive and bad days where I feel flat and so negative!! A wee pity part all for me!! I am extremely grateful for the skill of the surgeon and also for the fact I was kept in hospital until my operation. I just wish there was something we could do to change the way patients are viewed and treated ? I know how things should be!! but educating health care professionals is another thing all together.

[Joe_D in reply to momander]

Good days and bad days for me too, I can really relate to that! And I agree, many physicians don't seem to really take pain seriously. I kind of hate being examined tbh. I hope you continue to get some help!

[Scotsman53]

I tend not to talk to family and friends about my pain because they're heard it so often before, they glaze over, and I don't blame them, I'd do the same. What can they do, what can they say? Nothing really.

I'm saddened by what I hear from others in here and elsewhere about talking to professionals. I've been seriously let down by the health care profession, I know what that's like, but the vast majority of doctors, nurses, physios etc do what they can, it's just that sometimes there's nothing they can do, or they don't have the money.

Maybe I'm privileged, I now have hope, due to a new(ish) approach to chronic pain called The Mindbody Syndrome (TMS), I hope it can help some of the people in here too.

[Morganalefaye in reply to Scotsman53]

I can relate to everything you say. My GP is very sympathetic, but the fact is she just isn’t able to do very much these days because everything has to be ‘approved’ by a ‘higher authority’. She can’t actually even order an MRI scan just an x-ray, and blood tests. I also suspect that because I’m in my seventies and, with a lifelong autoimmune disorder or three, I’ve already cost the practice a fair bit, and perhaps I’ve come to the end of my …..allowance? I am in many ways, clinically, reasonably healthy apart from various bits missing and three types of arthritis, and the consequent mobility problems. I’ve looked at the TMS, which is useful in cases of ‘unexplained’ pain. Mine is not unexplained. 😊

[HalWoody]

I do not comment to friends or family, first off, through a definite choice of my own I have cut "friends" out of my life. They are all so happy when you are "up", but by gad, sir, when they realise that you really are in dire straits, they do not wnant/need to know, though they will never tell you such things straight out.

With family it is a bit different. We keep in touch mainly through email and the occasional phone call so it's mainly a point of answering questions about health - "How are you?" - they know I am ill - with an, "I'm fine!" message.

*EXCEPT*, a young nephew who seems to have sussed me out, often replies,

"Yeah! You're fine! But tell me, how are you?" and he keeps at me until he gets a proper answer. Perhaps I might change my Will?

[L5s1frozen in reply to HalWoody]

You nailed it on the head with that oneGak especially with how your friends are with you when you're up but when you're down they disappear I'm right there with you I've cut off a lot of people in my life I just don't need the extra headache I deal with enough BS I don't need any outside drama it just is easier for me to deal with myself I do not like to talk about it because I'm a stubborn old bitty and I've always been really independent I'm scared to death that I will become dependent on somebody else to take care of me the pain has gotten really bad and I am done talking with Healthcare they don't listen even when I go through my health records it's all a bunch of fabricated BS none of it's true some of it is some of it's wrong it's like they're almost sometimes talking about a completely different person it's crazy but I believe healthcare workers took an ethical oath to take care of people and I feel like they fail us every day they need to listen they need to understand but I guess you wouldn't understand if you're not in chronic pain every day I wish I could be in a position to help people like us maybe someday just not today

[DENZ01]

Oh dear 😬😬

[Loramay]

I don't talk to family and friends because it is boring for both them and me especially family. But in opposition to everyone else's view I have a great GP he goes with what I tell him as he says you know what is best.I am on morphine and fentanyl plus gabapentin he told me that as long as I stick to 3 pain medication his practice don't interfere. They had a pharmacist join the surgery to see everyone,when he got to me my GP told him to leave me alone as he will deal with my medication. He tells me it straight if something he thinks is not worth it he says I will do it if you want me to but I don't think it is in my best interests

[timbowPSP in reply to Loramay]

Ho w great t have one like that! I have one I really trust also, a sikh. Keep on keeping on! Timbow x

[L5s1frozen in reply to Loramay]

And honestly that is exactly how it should be you had sounds like you have a great doctor somebody who listens to you and tries to understand where you are coming from that is how it's supposed to be God bless your GP all the best to you my friend

[Hb2003]

Well some of them say its just anxiety i love that one 🤦‍♀️😒 and some of them say oh its probably not bad as you say it is and the one that ticks me off you look fine and act fine so i don't think your in pain . But i am thankful for the friends family and friends who help me when it gets bad and understand what type of pain i am in❤️

[Morganalefaye]

My pain and health problems even bore me so, as the World and his wife already know plenty about my pain, I only mention it when I’m about to fall over or need an ambulance, (and I’d probably be out of luck on that score today!)

[helvella]

If two people both have pain issues, it makes discussion very difficult.

Might initially appear that they will understand (and they do understand living with pain), but it can become a difficult thing to bring up.

[Joe_D]

Actually, this site is about the only place I've been able to talk about my recurring pain!

[L5s1frozen in reply to Joe_D]

I agree I absolutely love this forum I am from the United States and I know that this forum started in the UK or is based out of the UK so the information that I see here is very similar but somehow different than the practices here in the United States but nonetheless I absolutely love coming here just so I don't feel so all alone in my struggle it sucks when people don't listen and we have to suffer the consequences we go through so much every day just to get through our days and these people are Healthcare Providers just kind of dismiss us it's sad it's unethical really I feel like they should be held accountable for their lack of care and negligence we should be participants in our care and we should be advocating for ourselves and to push for what we need and not to be afraid and if we can't get somewhere with one doctor we find somebody else at least that's what I have done I've learned the hard way that I don't take anymore crap from doctors if they dismiss me I dismiss them we're done it's a wrap I do not waste my time on deaf ears if you're not going to listen to me or you can't help me I'm gone I really do wish everybody well I hope one day we are all living pain free it seems like it's a far-fetched idea but pain care has come a long way unfortunately with all of the drug use and overdoses they've kind of put a cap on it here in the US I'm sure it's there too I'm just not sure so I cannot speak on that but here it is very tough to get any kind of pain medicine they tell you to take Tylenol I was taking so much Advil that I ended up with stomach ulcers Tylenol literally makes you want to throw up so I suffer a lot but I'm not working at the moment so I can rest when I need I can heat my back with my heating pad lay down and I need to take a break I can barely walk for 10 minutes so yes I love this platform because it allows us to express ourselves people who understand I just feel bad that there's so many people out here suffering unnecessarily nobody should have to suffer in this life we euthanize dogs that are suffering why can't we do something for humans does not make sense to me I believe Healthcare System is designed to keep us sick not to fix us if they fix us they wouldn't have any customers think about it God bless us