I need your views on pain and fatigue for NHS.

Hi all. My senior pain consultant is interested in changing attitudes in the medical world when it comes to fatigue when ilinked to pain, any type of pain, as he feels that fatigue is often negclected, overlooked, brushed to the side, or simply labled as just a 'symptom of pain', and therefore something to just 'deal with'. Therefore I would like to collate your views. How would you like medical professionals to tackle fatigue when it is linked to your pain? What words would you prefer they use? What questions would you like them to ask? What would be helpful? What is NOT helpful? How could your fatigue be better understood? How do you cope with your fatigue? What would help you to cope with it? What has been helpful in the past? Has anything a medical professional has done in the past been particularly helpful, or not as the case may be? How important a factor is fatigue on your pain? How does fatigue affect your pain, and your condition generally, day to day etc? Any of your views I will be glad to pass on to better help all of us in the future.

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  • Interesting question.

    Are you based in England and how is your pain Consultant proposing to educate the NHS

    It has been hard enough to get them to admit chronic pain even exists let alone any symptoms that go with it

    x

  • Hi, I am in England and my pain consultant is the head of department who does many talks and writes many articles, being the lead on many publications so he has offered to look at patient views on how fatigue affects oain, and how medical professionals treat patients with such issues. Any input is useful.

  • Sorry for many questions. I used to live in Scotland where we had a cross party group on CP...we head lead consultants, GPs and MSP.

    Most pain departments only have one consultant and by profession they are anesthetist. As such they have a vast knowledge of pain meds.how they work and what the side effects are

    Any pain meds which help the muscle to rlax have a side effect of making you drowsy. Nothing can change that unless you stop taking them!

    Chronic pain at whatever level is debilitating and you feel constantly drained as your brain fights tht pain. Pain also keeps you awake night after night so sleep is denied.

    Consultants will already know all this...or should do if they are listening to their patients.

    I am still uncertain why he needs to ask pain sufferers in order to take his message out to lectures. Or whoever he talks too

    x

  • It's more about how professionals should approach fatigue as a major part of pain rather than a side effect. Pain specialists look at pain, but he wonders whether more focus should be on the fatigue, as that may help the pain, and if so, how to do that. I am a patient myself with both pain and fatigue, but I do respect any offer to change things. We have to work with professionals if we want to chnage the future of how pain and fatigue is seen in the medical world.

  • Not it isn't a side effect it is part and parcel of the whole package. If you went to your GP with fatigue what would he say?

    I don't see how you can have pain without fatigue. Like an infected finger. Get rid of infection and painful throbbing is gone! Sleep returns and you can lead a 'normal' life again

    What are your own thoughts on what 'professionals' could do?

    x

  • I find that GPs and pain services do try, but then give up quite quickly.

    I've been told to 'get a grip 🙄. I'm trying.

    Sleep is a big problem for me. In another words, i hardly get any. That makes the depression worse. Plus with the pain makes me want to not bother.

  • What would you like them to do? What would you like them to change?

  • Treat the pain first the professionnal can send the patients to do on vary tests what need for the fatique. Can it show on the blood test? if they need somethings to boost them up then act faster.

    Do more test!!

  • I suffer from chronic pain, going back 15 years, and fibromyalgia too.

    I feel that fatigue is very often overlooked by the many GP’s consultants etc I have seen over the years and many different departments too. They mostly all say that my fatigue is a side effect of the many medications i take., but I don’t believe it is that. There are many nights of the week where I could not have a wink of sleep, even though I take medicine that should help me sleep like zopiclone. It’s not like I slept during the day and this could happen for 2-3 days in a row, and by the end of it I feel so exhausted that it actually causes me psychological issues and effects my moods and makes me not a very nice person to be around.

    When I have raised these issues with my gp, I didn’t get a sympathetic conversation, I was told rather abruptly that I couldn’t have any more medications, and that she thought I was wanting stronger painkillers or sleeping tablets. That couldn’t be further from the truth, I wasn’t a no sleeping because I was in pain, certainly no more than any other night when I am able to get some sleep. They don’t offer any alternatives to try, like relaxation therapy’s, talking therapy etc.

    I have tried many times to raise theses issues but it’s like they have one way of treatment in their minds and won’t be moved at all. I then tried to see a different gp to see if they would be more helpful or understanding about the situation but they won’t change anything because they are not my gp and don’t know my history.

    I just feel quite abandoned by all the medical doctors that I have seen, since I have been diagnosed with fibromyalgia and chronic pain, I am now labelled with this and they then had tunnel vision on the treatments I should be trying, and the appointments you get are never long enough to actually get to speak to them properly and see if there are any alternatives.

    Just because you have certain conditions that should not be taken in to account sometimes, and rather than tearing the condition treat the symptoms sand problems caused by the condition, and treat people individually and not treat them with what the majority of people with fatigue are treated with, and just take the time to treat people individually..

    Sorry if this is coming over as just a rant that is repeating itself (writing this after no sleep for 48 hours so far) but I have many years if the same doctors saying the same thing, referring me to another doctor who then does the same, and eventually end up being referred back to someone who had moved me on in the first place.

    I believe that doctors, especially GP’s should update the way they deal with patients, I find the older gps can be very set in their way and won’t think of alternatives to medications or maybe even trying different combination therapy’s, where when I have seen younger doctors they seem to have a different view on how to speak to us and are more open to how they try to get on top of the issues with whatever it takes, maybe being medicine as well as talking therapy or alternative therapy’s.

    I feel that it is not just GP’s that need this training, but the whole of the medical staff in hospitals too. If this could be done then I feel that people with these conditions would get much better treatment, which would then maybe mean less trips to the hospital which would then free up more appointments and then waiting times would reduce and this would also hopefully save the NHS money which could then be used for more important things, which in the end makes a better all round health service.

    I realise this is probably pushing things too far, and probably doesn’t answer the questions you were actually asking, but I had to get this off my chest, it had been building up for over 15 years. Sorry for such a long reply

  • Trust me, I know where you are coming from. I too have complex pain conditions and suffer pain and sleep issues which seem to go hand in hand. Its so easy to simply be prescribed pills or to add to it sympotoms, whichever new issue comes along. You feel like a hypochondriac often, with feelings of guilt, anger, loneliness etc etc... and on a catch 22 routine, which seems to last year on year off with no change, or hope of improvement. you are not alone. I as a patient, as we all are, should be the ones to lead and educate, but we don't get the chance. I'm hoping whatever input I get on this site can help a little to change things even in a small way, even slowly. Take care, and I wish you better sleep and less pain for the future.

  • This is just another exercise which will go nowhere. I.e. it does not tackle the issues that people with chronic pain have. The real approach needed is developing tools for the chronic pain sufferer to manage their condition. There is a whole variety of things which the chronic pain sufferer has to navigate. What needs to be navigated will vary depending on where the pain sufferer is in coming to terms with the chronic pain and managing the chronic pain.

    The person with the chronic pain has to investigate themselves. They have to learn what symptoms mean what. The symptoms can be very variable and can change very quickly.

    What is being asked here will give maybe lots of quality clinical information which in reality is very unreliable when applied to a particular person at a particular time. Handling chronic pain well is about developing management skills. This takes a long period of time because of the need to learn what a particular symptom means with respect to surrounding environmental conditions.

  • It would be good if we could have some "Group therapy" to be able to discuss things in a circle or round a table instead of being left all on our own with nobody to talk with , evenings and night times are made worse when we are left awake worrying all on our own.

  • If we thought every attempt at change was simply another excercise going nowehere, nothing would ever get done. I'm sorry you feel that way but talking about manageing ourselves is something we all already know, as we deal and manage our illnesses each day. I hope things will change, and if I can offer advice from pain sufferers to specailist who bother to ask, via this site, I will endeavour to do that.

  • You say: "talking about manageing ourselves is something we all already know, as we deal and manage our illnesses each day." The truth is that many people do not know how to manage themselves. They apply the same strategies on managing chronic pain as they did when they did not have to manage chronic pain.

    I have spoken to many people about the corruption inherent in the NHS. I have experienced the way people with appropriate qualifications (medical consultants) do not make any effort to investigate where a person is on the population - chronic pain curve. They is much talk about evidence based medicine with the professions ignoring the issue of where is the patient on the population response curve.

    I have access to various self investigation strategies which do not exist in the NHS. There is now various investigations on how many researchers have lied about the results they have found. There are investigations on research where it is being found that the results are unrepeatable.

    I learnt something about fuzzy logic and how the brain works in decision making when I went to university circa mid 80's. Fuzzy logic is something many medical pain specialists have no knowledge of. Fuzzy logic is something many neurologists have no knowledge of. The laws of physics is something that many medical specialists have no or very little knowledge of. The list goes on.

    The "sorry I feel that way" is the modern professional putdown to imply that what someone says is a feeling with no basis in truth.

    Background

    BSc (hons) in a science Subject. 12 years experience working in quality and reliability. A levels in Science subjects such as Biology and physics. HNC Applied Physics. Did some Biophysics at University.

    40 years experience of mindfulness and meditation. 40 years experience of Alexander Technique. 40 years experience of T'ai Chi. I read scientific American, Nature, New Scientist on a regular basis. Have tutored maths and physics at A level.

  • I admire your qualifications, but the most imprtant aspect for me is your experince of pain - not reading about it, but feeling it. My pain psychologist even says to me that he has over 30 years of pain management experience, but no experience of chronic pain himself. This I admore in him, as he acknowledges that he will never know how I feel. I disagree with you that people do not manage their pain. If they simply exist and get through each day, they are managing, just not managing well, or in an ideal fashion. I will pass on your 'Fuzzy Logic' information to my specailist but I did not set this post to compete with what specialists know, but simply put over views of patients in how they feel about assumptions, treatment and language that is used in the NHS. However much you feel the NHS is neglecful or lacking, it is all we have, so we have to work with it, even if it frustrating at the best, or worst, of times.

  • Thank you for the reply.

    I stand corrected over "managing pain" wording. I will have to think how to input "managing pain well". It took me a long time to develop strategies to manage pain well and there are occasions where management means resting the brain (sleep).

    The situation is not about competing with what specialists know. The situation is about investigating how a person actually functions. Each person comes with different experiences different ways of processing body information. Also different speed of reflexes which work in differing synchronisation.

    It is not about knowledge of condition that is words. It is about developing skills to enable the body to function as well as it can. A specialists knowledge is words which does not enable good functioning internally. What a person finds from self study of themselves is something that cannot be understood in words. This something helps to modify the way things can be done to reduce damaging stresses that cause a person to approach their stress breakdown point.

  • I posted this on the EDS forum but I thought people might find it useful to post it here too.

    I would like them to start by reading this paper:

    onlinelibrary.wiley.com/doi...

    The two main contributing factors for chronic fatigue is pain and disrupted sleep. One of the factors in disrupted sleep is pain. But the other is autonomic problems.

    When someone has chronic fatigue and pain, instead of referring people to pain management clinics and CBT they should be referring them to sleep clinics.

  • There is a another contributing factor. Recent research indicates that the brain only gets rid of waste products when it is asleep.

    A person who is fit and well can leave everything to the body's reflexes to look after things. When chronic pain comes into existence the body's reflexes have to be overseen by monitoring from the brain. This is something that is the brain has to learn how to do effectively. This takes up a lot of energy and produces waste products and requires nutrients. If one part of the brain requires extra nutrient then decisions need to be made about how to balance the nuritient requirements and waste product removal requirements.

    This results in fatigue. Fatigue is a signal that the brain requires rest.

    Each person needs to do self study on themselves to navigate the brain control issues. There are various tools available to do this. The usage of these tools requires input from those who actually use these tools. Anything that looks at the fortunationing of the mind cannot be explained in words. Words rely on shared experience to be understood.

    Unfortunately, modern medicine is one size fits all.

  • Very interesting... so... healthy body, healthy sleep = healthy body and again healthy sleep! Lack of sleep is a serious problem which has been neglected for so so long. We as patients know this, but have been handed tablets, offered treatment that hasn't exactly worked, been given antidepressants as our morale has dropped and been labelled one way or another. I feel the frustration, as so many on this site do, and I desperatley want to help in some way. Your views are indeed very useful. Thank you.

  • I told my GP I haven't slept a full night since 2007 when I went from 'acute' pain to 'chronic' and probably manage 1/2 hours intermittently but can hear if anyone moves near me when I do, so not sound. I'd been given pitying looks for years but one surgeon I met put me forward for a Pain Clinic where I learned Mindfulness techniques which did help as I hadn't realised how stiff I'd been holding myself, which they said was my way of waiting on pain hitting me. I use the methods learned mostly while lying in bed and it has helped in some ways to relax my body hoping for sleep. It was also important knowing how others dealt with their pain and what they did to cope, other than taking meds. I wish the GP's had sent me there sooner (2013) but perhaps it wasn't available earlier? I may not sleep long and fatigue was a major factor in my giving up work together with the chronic pain (sitting at a desk falling asleep as best you can sitting up, but believe me, you learn) wasn't seen as acceptable. Do GP's have time to discuss lack of sleep? I had a few problems and went to my GP and after 10 mins was told if I had any other issues I would have to make another appointment. I know they have a certain allotted time for each patient but seriously! Making an appointment to discuss lack of sleep was seen as wasting time. Lack of sleep? Try extreme debilitating exhaustion which brought problems too. Only those in the Pain Clinic seemed to understand the extreme exhaustion as they understood the chronic pain was real too. This may sound extremely obvious but how many have identified disbelief when saying their back is in agony, just as much as saying I'm so tired I can't think, like having a cotton wool brain it's so bad. If I sat on a bus, train or plane I'd nod off as a result of sitting down completely exhausted. Also, jerking as a result of lack of sleep is a common occurrence and many people think you're mad! One thing I hate is pitying looks, surely lack of sleep caused by chronic pain is taken seriously, but no-one provides help. It was the actual pain all GP's treated and "the fatigue is a result of the sleepless nights but have you tried any remedies?" So I can say Nytol and any other over the counter meds are useless for sleepless nights and are not geared for chronic pain suffering. I have 4 damaged discs and Spondylitis.

  • Thanks for your input..it is frustrating yes, how GPs give 10 mins and then its "next patient please". The patient goes away having to deal with a 'chronic' symptom of pain every night which ultimately makes the pain worse, but ultimately doesn't seem to change. Having sleeping meds to lead the life of a zombie isn't an option, as I have found, so what do we do? I really am hoping that as thought turns to fatigue in pain clinics, that this issue can be addressed more, even as much as the pain issue. I don't know what will coem of these opinions which I WILL pass on, but they can't hurt can they!

  • Dear DISC

    When someone get pain it take all their energy away from them every body know about it.

    Dr should listen to the patients and treat the pain first then see if they need some things else ( vitamin, diet food ect..) to get them feel better.

    You know a lot of people have posted on heathUnlocked because they do not have alot of help from the professionnal medical to help them to get back on their feet.

    If people feel no fatique and can stand/walk without any pain it cost NHS less time and money .

    Final point :

    Listen to the patient

    Treat faster

  • Hi,

    This sounds like a very useful proposal. I live in Scotland, does that matter to your information gathering?

    Kind regards.

    Catmag58

  • I live in the UK and suffer with chronic nerve pain (PHN) following an extended outbreak of Shingles. This came after a transplant back in 2002. The severe nerve pain has been with me ever since. Fatigue is also a symptom for me as I also suffer from SLE (lupus).

    My pain consultant seems to have given up with me and although I've been given meds, none of them, apart from strong opiates, seem to do anything to help. The fact is, she tells me there is nothing else which can help me. So it seems I have to suffer in silence and swallow medication which is not only addictive, but has dreadful side effects.

    I've tried Quetenza patch treatments at the Pain Clinic which now don't appear to work as well as Lidocaine patches, which work but I'm now allergic.

    I also tried attending a Pain Management Group and although I found it useful, keeping ;mindful' is not easy when the pain really flares and all you can think of is taking medication.

    I've found belonging to Pain groups online a huge help and this has been more of a breakthrough for me than the Pain Clinic. It's great to know that in parts of the world where medical marijuana is legal, patients find this hugely beneficial for nerve pain. Unless you wish to break the law, then in the UK this option is out of the question (unless you have MS).

    The NHS have tried, but as my Pain Consultant has said, nothing further can be done for patients like me.

  • I wish you all the luck the future... we all need hope don't we that something good will happen in the pain world! Take care.

  • I have nerve pain from many issues with my neck and also have been told I basically have to live with it so I sympathise with you x

  • Hello I have pbc a liver condition which is autoimmune.it causes me extreme fatigue,if you look on the pbc forum you will find Many posts about this patients in general middle aged women feel isolated and ignored by most consultants.a sympathetic understanding doctor helps as there is no treatment read this bmj.com/content/345/bmj.e7004

    If only every doctor listened.I also see rheumatologist for an as yet undiagnosed episodic inflammatory condition causing extreme pain this time it has been 2 years so far and elevated crp,esr, leucocystosis and aneamia have finally convinced my consultant something inflammatory needing treatment is happening, and we are closing in on a diagnosis now which will probably be something quite rare BUT THIS HAS TAKEN YEARS AND 3Referrals to rheumatologist doctors need to listen to patients and believe them I could have been helped more quickly if they did, patients don't generally make things up or exaggerate they that want to be believed and helped.I am very grateful to my current rheumatologist and believe I will get an answer this time but it shouldn't have taken 3 referrals and 7 years,in a patient with one known autoimmune condition and a strong family history of autoimmune diseases.LISTEN TO THE PATIENT AND BELIEVE THEM PLEASE.

  • I had a Rhumatology appointment last month (also waited a number of years), but unfortunately I missed it. It was at 9:30am (I ask them not to book early appointments), although I tried to get some sleep since 7pm as I hadn't slept the night before. I didn't sleep until 4-5am and slept through my alarm.

    If I didn't know better, I'd say I got drunk and fell down the stairs last night, but I didn't go out last night. This is my normal. 🙄

  • I have had numerous health problems for about 40 years. Roughly 20 years ago I was diagnosed with fibromyalgia, because I have had mental health problems in the past it was initially put down to depression that I was so exhausted & in so much pain. Eventually I was given different types of painkillers to try, this went on for 3 years before actual diagnosis. Like some of the others on the forum have said you are on the point of absolute exhaustion but somehow this is not conveyed either verbally or physically because people, including medics think you look well. I have left many consultations in utter frustration wondering if I have actually been listened to or just watching the clock. I was very fortunate to have a good, now retired, who actually took the time to really listen. He made me cry one day saying he was only the medicines manager, I was the one who has to manage my multiple problems on a daily basis. I was crying because I felt this was beyond me but he made me stronger by listening. Don't misunderstand me I know all medics are working under pressure but it is vital they listen to ALL the symptoms. My retired GP asked me to make a list of symptoms as we as patients are under pressure to remember everything in the allotted time given. I know you have to prioritize but this gave us both the chance to discuss these in the time given. Fatigue is a very real problem, I do not sleep through the day but don't get much at night either. I choose not to have sedation because the cure is worse than the ailment for me. I have had had reactions to may medications. The bottom line for me is that PEOPLE MUST BE TREAT HOLISTICALLY & PROFESSIONALS HAVE LEARN TO LISTEN TO PATIENTS. People & professionals have to find a mutual compromise to help each other to convey the important information in the time they have.

  • Most pain specialist don't understand pain, but that's ok*. Sometimes you really do wish they could walk a mile/ live a day in your shoes.

    *In software engineering (my field), we have the term 'domain experts'; they are people who have intimate knowledge of how the business works. The software engineer (specialist) works with the domain experts to prescribe the right solution for the business.

    My last meeting with the pain specialist, I was treated more like a child than a expert. I know when it's the lack of sleep/ pain causing the fatigue, not the Amitriptyline.

  • Hermes123,

    Fatigue ! Exhaustion, call it by any name you like, as someone who has suffered with back pain for longer than most, anyone who is worth their salt will know pain drugs and exhaustion, to which I am not referring to tiredness through over work, totally different forms related from two different forms, one is the burning of energy beyond the bodies physical output. the other which we are talking about is the result of a chemical reaction induced by the drugs we take, reason is to slow us down, so we do not exert damage part of the body. But no chemist has come up with an answer how to balance the two. So the answer at present is less drugs less exhaustion or more drugs to deaden the pain more exhaustion. It's not rocket science, some people after a long time can manage it far better others. But it's not fun to have that only choice to run one's life.

  • Personally, the thing that would make the biggest difference to me is if health care professionals would acknowledge and understand the effects that fatigue can have on our lives. How much harder it makes it to deal with the pain when your whole brain and body is crying with fatigue. How can we just ‘get on with it’ when every movement causes a fresh wave of pain and deep fatigue? When all we want to do is sleep, yet sleep doesn’t ease the fatigue? Fatigue is often dismissed as drowsiness, but it can be so debilitating. Trying to get anything done when we need 4 naps a day just to get through!

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