I am upset and horrified at the amount of posts where the person is suffering from horrendous pain and the GP, specialist, consultant, etc don't appear to give a damn. Everyday on this forum there are posts where for example post major surgery the pain is worse to the extent they can't walk and the specialist won't scan them and says there is nothing wrong, or a GP who won't prescribe anything more than ibuprofen or paracetamol, or in my case a GP who says, "personally I don't like fentanyl" even though it's not for them!
Then there are the stories of health professionals who won't refer to services such as physio or pain clinics, or referrals that are allegedly made but there is no record of them or it takes months to get an appointment.
This is only a snapshot of all the stories on here and I am getting more and more appalled. Of course there are good health care professionals and I am lucky the majority of mine have been great, but there are a lot of us on here and I think we should be able to put our heads together and decide on the best course of action to improve our care and treatment.
Chronic pain is rarely discussed in the media so maybe getting it out there would help? Maybe setting up a petition would help? Or sharing the names of good doctors and specialists in our areas would help? Any ideas would be greatly appreciated.
It is worth remembering that the NHS is there for us and we can choose who we see, even choose which GP we see. It is also vital we all research our symptoms, conditions, surgeries and treatments so we can arm ourselves with this information if we have to see a rubbish/non understanding doctor.
Please let me know your thoughts and ideas. Thank you x
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sharelle
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I have been reading posts by people who have been suffering due to pain and what the GP or the surgeons do is offer only symptomatic relief.
I too would have been a sheep from the same flock had I not taken matters in my hands and went about treating myself with Magnesium and Zinc in oral and Magnesium from Dermal fusion route also.
Generally 80 percent of body complaints have lack of Magnesium in the body. Magnesium needs to be taken orally as well as through Dermal infusion . I also make my Magnesium water and apply Magnesium oil.
Thus four pronged attack works like Magic in most of the pain related complaints.
Perhaps you could start a new thread about this and as many people as possible could start supplementing to see what happens? Our own study which is also a way to give power to the people as Sharelle is talking about?
Sharelle, I share this opinion completely, maybe there needs to be some sort of action group. One of the worst aspects about dealing with chronic pain is the frustration and desperation that i have felt when dealing with my GPS and Consultant. I have rarely felt that they believe i am in this terrible pain. i always feel they arent taking me seriously and that i am wasting their time. They definitely do not appreciate or seem to care about the serious and massive impact it has on my life and that of my family, friends and colleagues.
i think it is very short sighted of them. The NHS is making cuts all the time, trying to save money, but i feel that money could be saved if chronic pain was addressed holistically with direct and immediate involvement with other services.
There should be a time limit for commencement of treatment not referrals, and that limit should restart for each stage and each referral, so there is a target to aim for. They like targets.
ALL GPs and Consultants should have to have training in actively LISTENING to a patient, and COMMUNICATING with them.
There should be transparency and culpability.
And there should be someone to complain to who will actually DO something. PALS are supposed to deal with these things, but if you read the NHS website patient comments there are literally dozens and dozens of horror stories where GPs are "getting rid" of patients who complain about their service.
Simply masking the symptoms (and often even this is ineffectual) is NOT GOOD ENOUGH. Treatments should be available in ALL areas and should be available for as long as they are needed.
I wouldn't know where to start, but i bet there is someone out there who does. I hope they see your post and offer their help because we need to do something to make it better. It sounds like you are inspired to do something....I'm right beside you Sharelle. x
Thank you all for your comments. Boozybird what do you mean by a new thread? Is this not a new thread? Does that mean some people won't see this? We need to get this out to as many people as possible
Hi Sharelle, your post sounds like a good idea to me, even if it only raises awareness amongst the public and medics that we not only have chronic illnesses but also chronic pain and that pain is variable and not so bearable when another pain causing event occurs like an operation for instance. Guess you could start a petition to see how much interest is engendered. Keep us updated if you go ahead please
The main problems are that
chronic pain is not a subject that's taught to medical students. They all know what to do with acute pain. with chronic pain they seem to be stumbling around in the dark because it doesn't fit the protocols for treatment.
Pain killers are dedigned for acutecpain, not chronic pain.
Chronic pain is so personal. 2 people with exactly the same injury will feel completely different types of pain.
They tend to focus on other symptoms like depression and obesity saying if these are sorted, the pain will improve. Perhaps it will, but if you are happier in yourself you can cope better, so it may not improve the pain, just the way you relate to it.
I do agree that we are given less treatment options than other conditions, that there seems to be more "I don't know what to do with this" and more "we can't help you".
I have noticed the misery, lack of self esteem, depression in some posts. And compared to cancer patients who are facing the worst time of their lives, they are fully supported to cope with all aspects. None are depressed, all remain positive even when it's terminal. I just wonder why chronic pain is so ignored by the medics.
I am in favour of alternative therapies to be available on the NHS. From my own expertience, they have helped me come to terms with this being me for the rest of my life, given me various ways to relax, herlped my fsmily accept my limitations, and reduced my pain to a level I can cope with.
The problem for the NHS is that they can't measure effect. Feeling better in yourself after a massage, even though your pain is the same doesn't count in their eyes.But taking a painkiller that takes the edge off the pain does count.
Things like art and music therapy, meeting others with similar problems and having some fun would go a long way to help.
Not sure how to go about an action group, or what we could achieve, there are so many avenues to address, the biggest thing would be chronic pain as a module in medic training, compulsary for gps.
The best way to fight them is to become an expert in your own pain, learn as much about what is going on in your body, so you can talk to them at their level. you can search for research papers online. Some only medics can access, so ask your gp to get them for you. Do the research for your gp. They have a couple of thousand patients each and very little time to delve deeply into everyone. It may be that new methods and ideas are being explored that they don't know about because they are not interested in it.
Could maybe challenge the pharmaceutical companies about meds that don't or partially work. Afterall, would you buy a car if you knew it was going to stop for no reason every 100 miles?
Re 'The best way to fight them is to become an expert in your own pain, learn as much about what is going on in your body, so you can talk to them at their level.'
That is the best advice i have read! It is one of my mantras.
Research and take responsibility for your health and that of your family is imperative. Nutrition is a major factor in most health issues. I have improved my heart condition, come off blood pressure and statin medication, sleep better than ever, lost excessive weight all through eating a good 'real food' diet. My doctor was amazed at the changes in my health and asked me what I was doing! Doctors generally only have about 4 hours study about Nutrition at med school!
I seem to be recalling that one of our local mps became a champion for people with life long conditions, which would include chronic pain. I'll look into it and report back. Maybe we could all approach our local mps and get a few interested, see what they can offer us.
It's not just our health, but quality of life, work opportunities and the NHS being more proactive. There are lots of issues to tackle.
I wrote a long letter to the Rt. Hon Jeremy Hunt. I received a reply via email but it was responding to someone else's concerns!!!!! Wrote to David Cameron and was politely palmed off - contact another department. I have tried and tried and tried and will keep trying on behalf of my daughter.
That's such bad luck. Maybe other high profile business people could be rallied to join in too, or larger companies - they all seem to be flying the 'help the community' flag thesedays. Local radio and community radio may be able to spread the word too. Even going to charity group meetings like the stroke society, arthritis etc, letting them know what we are doing, and asking for someone to represent that group and feed back to them. Most churches have a person in charge of community issues, and I'm sure they would want to help too. we'll need a lot of people behind us too, not just those at the top of the pile.
At the moment I'm trying to raise awareness of the condition and am having a fundraising day in July for Pain Concern. I'm hoping that by doing this we will get more support behind us; so many people live in ignorance of this condition and are disbelievers. It's just a start but we will keep on going!
Have just emailed John Lamont MSP and asked him if he remembers championing people with life long conditions in parliament, and if he doesn't, would he like to champion people with chronic pain ?
Sure, tweak it to suit your specific problems. If I get a negative response, I'll send it to the others in the area.
I remember that you visited a wellness group for people with life long conditions a couple of years ago, and you offered to champion their cause in parliament. Is this still a role you do, if not, would you consider doing it again?
I am with a different group now, people with chronic pain. Over the years we have noticed an increasing trend within the NHS of a poor service for chronic pain. There is a general feeling of not being listened to, being taken seriously, lack of support, lack of understanding and lack of medical training. We feel that chronic pain is multi faceted and should be treated as such with a much more holistic approach.
Nobody can understand the crippling inaction of chronic pain unless they've suffered from it or lived closely with a victim of it. In my case it means I'm totally out of action firstly from the pain, secondly the hour or 2 hours waiting for the painkillers to work, then thirdly from the brain-dumbing + dizzy-making effects of the painkillers. Work is simply
impossible. I'm not suggesting that g.p.s should be forced to undergo a course of agony, but they should be taught about it.
Generally speaking, Maybe if you had some alternative therapies prescribed, or had the chance to explore these free on the nhs, you could maybe reduce your meds, making you less dizzy, which in time may lead to doing a part time job.
Pain should not exclude you from working in the same way as a disability should not exclude you. The employer must allow for your needs. There should be enough flexibility so that you can work more on good days and less on bad, or the opportunity to work from home some of the time. There are ways round it but the employer has to be enthusiastic, empathetic and insightful.
You are right, chronic pain is hard to understand, especially if you look ok from the outside.
Everybody manages to post on here frequently, so could that be reversed and used for online research into pain management? Sending an email to your mp is like doing a post. That is work, even if it's not paid. You could phone them if you prefer, or visit their surgery. If you can sustain this for 2 hours a day, thats a 10 hour part time job. I know it's not that simple, but it can be done if you think enough about it.
It would be great if everyone is interested and wants to partake to put a succinct account of their story. We need to keep it straight to the point, without going off tangent but making sure it's factual and in depth so people can see how much we go through.
How about we have sub headings, such as Diagnoses, Current Symptoms, Current Medication and Effects, Past Medication,Effects and Why Stopped?, Past Treatments, Ongoing Treatments, Future Treatments (if known) (For treatments, include major surgery, minor ops (day case) e.g steroid injections, ablations, physio, chiro, acupuncture, etc), Health Care Professionals/Services Involved (e.g pain clinic, OT, GP, Consultant, Physio) but don't give names! Other Treatments/Relevant Info (e.g TENS machine or anything else that won't go anywhere else! Tell me which area you live in and also if England, Ireland, Scotland or Wales.
If I've missed out a vital heading please let me know. I'll do mine tomorrow and post on this thread. If you want to take part but don't want to put it on a thread, you can email it to me sprice123@sky.com you can also remain anonymous if you want.
I'll also put this information on a new thread, but you don't need to reply with your information on both. I really hope we get a lot of response on this and some other ideas would be great. I'll also think about putting together a petition.
Hi..sharelle..please read post I've wrote on your last page ..been on this site few month now..and finally someone who understands..we need good doctors...not just robbed off with meds etheir.. times to come will get worse you knew.. I noticed my last visit..gp.. they looked up.must have a bit on our file how much we cost so far..not jokeing ..made me feel. Even worse,,,
hi i think this is a great idea,i have been in constant pain since i was 18 and at 32 in chronic pain 24/7,all the doctors done when i first went to them when i was 18 was throw high end medication at me without any testing or scans even though they knew i had been in a house fire and the only way the firemen could get me out as quickly as possible was to throw me over the balcony of 3 flights of stairs,at the hospital they just continually tested my artirial bloods,even though i remember a fireman being at the hospital and telling them what they had done to get me out of the building,i had no tests done on the rest of my body not even a check over,i was released the same day,within days i had to visit my doctor due to the pain i had in my back to which they just gave me 90mg dhyrorocodine(df118) and just said i would be fine with them,they made me feel so sick but i carried on taking them as they took some of the pain away,over the yrs i was prescribed many different high end medications still with no mri or ct scans and not even a doctor touched my back,it came to a head when i was 32 yrs old when finally a doctor said he was going to refer me to a back specialist,i went to the appointment and went through my full story and he could not believe i had not had a ct or a mri and he asked to do a basic x-ray which was done there and then,he then asked to examine me which i said yes to but again he did not touch my back,he then asked me to go back into the main room where my x-rays were up on show and he told me i had obviously broke my back when i landed in the house fire all them yrs ago,he could not believe i had a baby with no problems when i was 21 and told me the break was down my spine and it kept re-opening and healing wrong again and nothing more could be done for me as so much time had passed and something about being so near to my spinal cord,i have since had further injuries with discs out and undiagnosed problems where tests have not been carried out correctly,i am now having to use a wheelchair at the age of 40 but only outside for the moment as the adaptations i need in my bungalow have not been done so i have to try and use a zimmer frame indoors when i feel i can get up from my chair,i am in constant pain now and all i get told from my doctors is i am a very difficult patient as i have such a high tolerance to medication,i have been waiting now for 7 months to be seen as urgent at my local pain clinic and i just feel that the whole medicine system has failed me ,i feel i was never listened to and i have now got a advocate working with me to try and sort things out to try and make my life more comfy,i have not slept in a bed for over 3 yrs and have to sleep in a computer chair due to a hospital bed i am unable to sleep in,i am awake for 22 hrs a day if not longer,my doctor has reduced one lot of medication and i now am in more pain than ever but also it makes me more unmobile so i sit in my chair watching my days go by in constant pain,fighting the thoughts wizzing round in my head and pray for a good day that never seems to come,my heart goes out to anyone who has been treated poorly by doctors/specialists etc and i think your idea would help a lot of people as i know i feel i have no where to turn and do not know what to do next as i am fed up with endless promises from doctors that things will get better but it will take time x unhappy74 x
Oh my god I can't believe what you have been through, an animal would be treated more humanely than you have been. Thank you for sharing your story. Have you considered legal action? I know it wouldn't make you bette but someone needs to be held accountable x
Sorry I'm late to reply was told by one GP about my si joint pain "there"s nothing I can do " and ask why I was not working and I've asked for scans off 4 Gps all said no and when I started have treatment the physio was rude asked if I've had any X-rays on my hip ? I said no . The treatment I got was really poor I've still in pain and still waiting too have more treatment sorry for the rant
I'm sorry that this post turned out long, but I hope the info may help you if you're still suffering.
I came across this post. I know it's a very old post and I hope that you are much better. In case you are not, I have SI joint problems too. They are very debilitating. But wearing an SI joint belt helps me do a little more. A TENS unit can help a but with relief. Also stopping lifting or moving anything more than 2 or 3 pounds - which is next to impossible and requires asking for help constantly, but made a big difference for me. Another big thing is avoiding bending and twisting at the waist.
Most importantly, I recommend asking your health care provider to check if you have a hip labral tear. Over a year after they found my SI problems, they found my hip labral tear. The symptoms of it overlap so much with SI joint and low back pain (which I also have), that hip labral tears are vastly undiagnosed and the average time of finding them is 2.5 years (which was right on for me). I Just had surgery for the labral tear. I hope and pray that it'll make a big difference, as all else has given mediocre or no results.
It's disgusting how you've been treated. Can you change surgeries or even get a private consultation if you can afford to?
Prince Charles supports alternative medicine and therapies.
Very interested in your ideas, just 'liked' the Facebook group. Will read in detail but would love to get involved in educating GPs. My GP admitted that because he is an 'old' GP that he just wasn't trained in chronic pain!
I have had to pay privately to get a diagnosis and treatment for secondary pain that is apparently 'all in my head'!
I couldn't agree more. Now I might be going to offend many people on here with my thoughts on GPs ! I honestly think they are very limited with their knowledge with patients whom have complex needs, me being one and I've found that after my own research I've gone into my doctors and told them what I think is wrong and what should happen! For example my own go had no idea what was happening when I went for my ACDF (anterior cervical discectomy and fusion surgery) I realised they are general practitioners and know little about a lot of things but surely a GP should know that my pins and needles down both my arms was caused by trapped nerves in my spine ? Also I've recently been referred to a rheumatologist but only because I persisted and said I think I've got rheumatoid arthritis or such like , my symptoms were so severe and so obvious! Painful joint on symmetrical sides hot to touch red swollen and stiff, flu like symptoms and all the rest of it. So I said to her I really think I should be referred to a rheumatologist to find out what's causing such terrible joint pain. It was the same with my back I knew an MRI scan would be the only way to determine the sickening pain in my upper back. And yes I've had chronic pain for over two years now and I've been left to pop pills and deal with it alone, the back surgery I had 3 months ago has left me with Worse pins and needles and numbness than before, I can't lift my arms above my head, impostomwash my own hair without basically kneeling in the shower with my head bent completely forward and I haven't used a hairdryer in 3 months, but went to see surgeon for a follow up and he said it can't be possible?!?!? What so I'm lying!? I saw rheumatologist once 6 months ago and symptoms are getting worse by the day( I've just got out of bed first time in 3 days) in my right hand I now have severe trigger finger and every day the pain brings me to tears as I prize open my fingers. I have been completely abandoned by my gp, surgeon and rheumatologist. It's 2years 3 months since I first saw GP about my back, I had surgery 3 months ago!! I'm living in hell , people don't see pain and chronic pain means you are dying inside with the daily constant struggle it's every single day no break, the burning, stabbing, throbbing, sickening pain with everything you do, people talk to me but my mind is just on the pain because that's it it's all you have and you can't think of anything else it literally does take over your life, but you come across as crazy because it's not wrapped in a plaster cast for everyone to see!
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