How can we be taken seriously with chronic pain ? — Scope | Disability forum
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How can we be taken seriously with chronic pain ?

elbest
elbest Member Posts: 37 Connected
Hello, I am a 58 years old and have several conditions which cause me chronic pain here they are - Ehlers Danlos Syndrome, Fibromyalgia, Meniers Disease, Asthma, Osteoarthritis, Hahimotos Thyroiditis, two Mortons Nueromas in the same foot plus being investigated for PoTS.

I just wanted to ask how can we get help for pain? My doctor won't give me anything stronger than Naproxen as I have gut issues and many sensitivities to drugs. I recently had an allergic/ anaphylaxis event when I eat some vegan cheese where I had to call an ambulance so now I have an epipen.I can't have dairy or wheat which has developed over the last few years and alcohol makes me ill too! I am allergic to penicillin and several other antibiotics make me feel really ill. If I take other blood pressure medications than the certain brand I normally take I get tingling in my body I am just so sensitive. So how can I move forward? I recently blacked out and had to go to A&E to get checked out but nothing has been investigated although it could be to do with pots.

I have asked the doctor on numerous occasions to refer me to a pain clinic but they have always ignored me. Would this help? It is making me depressed and feeling low. 
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Comments

  • Anni
    Anni Member Posts: 16 Connected
    Hi. I don’t know if anyone has told you that the phrase chronic pain means something different to the medical profession from us. To doctors chronic pain doesn’t mean long term, it means pain without cause. For example, my friend had a car accident years ago and still gets pain even though everything has healed.
     I have cerebral palsy and describe my pain as ongoing acute pain. There is a reason I am in pain, the way I walk twists the muscles around my spine. 
    It might be worth telling them you know you don’t have chronic pain as they describe it.
    Doctors tend to ignore chronic pain because they know there’s no cause so it’s just a psychological issue to them. That’s my experience anyway.
  • feir
    feir Member Posts: 395 Pioneering
    Until i got seen by a consultant and correctly diagnosed i wasn't really taken seriously, and was wrongly diagnosed by my GP before that and they didn't really do anything much more than give me ibrufen(sp) gel that was useless. I'm on stronger painkillers of my own choosing now, they did want me to give me cocodamol but because i'm taking lots of painkillers (and sometimes purposely OD on them because they don't even work) i asked them to give me codeine without the paracetamol and they did even after i explained why.

    I've not been to a pain clinic, been fortunate enough to manage my pain mostly on my own, i would think they'd be useful to some people. No idea why you haven't been referred but my own GP is not referring me to people even when my consultant says it is recommended.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @elbest, I am so sorry to hear you are struggling with pain and feel you are not being listened to! Thank you for turning to the community about this topic. Have you tried seeing a different GP? It can sometimes help to get a second opinion and to find someone who understands your needs. I too have chronic pain and take naproxen (which doesn't do much!) and had to try multiple doctors before I was listened to. I wish you the very best of luck and hope you are having a low pain day today! If I can help in any other way then please do not hesitate to be in touch!
    Scope

  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    It’s so hard to feel chronic pain is not being taken seriously and yes I’ve also asked for pain clinic and consultants and been told to give it more time by my g p
  • Waylay
    Waylay Member Posts: 971 Pioneering
    I'd find a new GP! And if you have gut issues, naproxen is pretty awful for your tummy...
  • Mumof2ds
    Mumof2ds Member Posts: 147 Pioneering
    Hi eldest. ImI new here. Fellow Menieres sufferer, and awaiting other auto immune results, possible Lupus amongst other things as mucho Auto immune throughout family. XX 

    Thinking of you. Here if u need a Menieres shoulder. Some good FB groups specific to Menieres, and also Menieres Society great support. XX 
    Pip X 
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • Mumof2ds
    Mumof2ds Member Posts: 147 Pioneering
    Elbest sorry auto correct on my phone ignore!! 
    P X 
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • NCL
    NCL Member Posts: 17 Connected
    Having pain that medics can't explain/fix is really tough. Sorry for your troubles. Keep strong. Enjoy what you can and notice any good life that comes your way. 
    The week before I had the x ray showing my left hip had worn through with arthritis, my (really rather kind and competent) GP told me that 'everyone our age gets aches and pains; just rub a bit of ibruprofen gel on it love'. Twenty years of chronic pain misdiagnosed and I was still being dismissed! She meant well - others haven't. In retrospect, what I needed was to stick with my own reality. Not everything can be explained; even when there is medical evidence available (my own case) people in the medical professions can and do make errors and misinterpret results, and there isn't always the test evidence needed (sometimes because we don't get access to the right tests).
    I have found keeping a pain diary is really helpful. I've also found that autogenics (a relaxation method) has helped me control some of the pain I feel - I have learned to relax when in pain which is counterintuitive but sometimes stops my pain from escalating. 

  • elbest
    elbest Member Posts: 37 Connected
    Thankyou NCL for your advice and thoughtful comments.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Struggling now to keep online but I will address one point.

    GP's really do not understand Chronic Pain because no 2 people suffer pain the same way. It's one of those "catch all" statements the health services are fond of. To most people it's pain that goes on continuously but has peaks and troughs. Usually the peaks are bad but the troughs can be coped with using fairly low-level medication. The other generally accepted point with CP is that there is no apparent reason for it (using current clinical standards and methods).

    One thing I am absolutely certain of is that to everyone there can be nothing worse than what we experience when we are when at our worst. That statement is pretty daft on the face of it but is actually true. Worse though is that it is an acceptable pov from the health professionals we meet in A&E. I once pointed this out to a nurse in A&E when I said "by my scale or yours" in response to a "what's your pain level" question because my pain levels of 8 would be the equivalent of 18 to someone that has never experienced more than a broken bone. Oh yes, I did that back when I was 17, shattered Tib and Fib into small shards for two inches in length on both bones. How I wish my pain was back at that level, lol!

    I don't fit the criteria for CP because my pain has a very specific and avoidable cause and has no peaks and troughs for no reason, all I have to do to get rid of it is lie in bed every day and have someone around to look after me. However, it has gone on for 13 years or so and is very high because I do not lie in bed, so therefore I have been dumped into CP category.

    I never used to watch documentaries but now do as I have little else to fill my time with but I wish everyone would watch "999: Whats' your emergency" and "Inside the ambulance" so that just maybe people would begin to understand how much time of health professionals is completely wasted by people who don't bother with common sense and starting at the lowest level first and instead leave little time to deal with real problems and suffering. Most of the other such programs just cherry pick the few real cases from the many unnecessary ones.

    To give an example..... a guy gets drunk drinking indoors, falls down the stairs, walks up them again and goes to bed and then his wife calls an ambulance because he is in pain. Gets rushed to hospital, spends 4 hours getting an x-ray and treatment then sent home with not even a sprain, just bruising.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • NCL
    NCL Member Posts: 17 Connected
    TK - so much of what you say rings bells. Pain is worse when you do stuff and don't lie in bed - but you have to get up and do stuff. Yup. I so agree :I could probably have a lot less pain if I didn't insist on a life! And the pain scale questions - blah. My four is my husband's 10 - he says - because he has never experienced the kinds and intensity of pain I have. Without experience of your shredded bone 10, someone's 10 is limited to their stubbed toe 10.
    I don't understand the definition of chronic pain as being peaks/troughs and no apparent cause, though. I have been told I have chronic pain, but the causes are pretty clear in my case. 
    I really like the question: how do we be taken seriously with chronic pain? My understanding is that current good medical practice is to accept self-definition defining type and duration of pain.
    Maybe we should define chronic pain for ourselves: for me, it means just this: if you've been in pain for years, then you have chronic pain, and if you say your pain is extreme today, then you're right. That is your truth. Clearly, perceived levels are subjective, and some people label something not so intense as high level - but I can't imagine many people would continue to do that over days, weeks, months without some personal underlying reality. It seems so important to me that we don't dismiss how horrible someone finds things. 
    Reading these pages, what does seem clear is that we still have a situation in which many people's chronic pain is being ignored and dismissed. Have SCOPE anything written about chronic pain? If not, could some of us write something? It would be great to pass on experience to GPs and other medical professionals so that they learn better how to help. 
  • elbest
    elbest Member Posts: 37 Connected
    Well said NCL yes it would be great to be able to do something like that.
  • NCL
    NCL Member Posts: 17 Connected
    OK, elbest - you're on. First step I want to take is to investigate what first person accounts of chronic pain are already out there. I'll get back to this string and let you know. 
    If anyone wants to write something that they're prepared to share more widely that would be wonderful. 
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Yeah I was just saying earlier that I got my first assessment at physiotherapy today after self referral with months of waiting. They were very nice but when I said fibromyalgia it was like no no no no! We dont deal with that but we can help you with one issue you are having. I think that is hard to hear when you have several issues all connected to one medical condition or more like fibromyalgia and chronic pain. Its like saying here is a plaster for your blister and im sorry about your broken ankle. If that makes any sense. They also asked me had I been here or therecp seen specialists had xrays etc which I have not because my gp surgery doesnt seem to like referring on to specialists. Even when ive really dug my feet in. Yet I know other people who have done it. What do you do? Take yourself off to A AND E? I can barely get a phone consultation with a g p nevermind anything else. So this week I managed to get an appointment with the surgery pain clinic on Friday which is with a pharmacist apparently. I am trying to keep an open mind, but what can I expect? Is it like hospital pain clinics? I havent been there either. 
  • Waylay
    Waylay Member Posts: 971 Pioneering
    @NCL Great idea!! 

    @debbiedo49 I'm so frustrated! My right hip has been hurting more a d more for years. I can feel it grinding, and I know that I'm causing damage to it. I'm pretty sure it's because my spine is curved (due to back injury) and because I walk a bit strangely. 

    I've been to physio multiple times, and I always ask them for help with my hip. They insist on working with my back, as, "If we can improve your back, that should help your hip". Well, yes, but my back problem (chronic pain) has been going on for 10 years. It's been X-rayed, MRI'd, injected, denervated, adjusted, cracked, medicated, stretched, exercised, heated, chilled.... Physio, chiropractor, osteopath, myofascial release therapist, specialist spinal physio, pain clinic, pain management...  You're not going to fix my back!!! Please see if there's anything we can do for my hip? No....

    Argh.
  • NCL
    NCL Member Posts: 17 Connected
    I feel utterly wrung out. Bad week of chronic pain and all my self-soothing strategies are exhausted. Does anyone else experience that feeling - I'm like a floppy doll that's beaten up, looking as if I've been run over by a bus, struggling with basic getting to the loo, drinking, let alone brushing teeth. Anyone any strategies when exercise, ice, massage, pain relief, visualisation, phoning a friend, distraction, meditation, autogenics, pinching myself, sleeping, having a good cry... don't work?
  • NCL
    NCL Member Posts: 17 Connected
    I've got some questions that I'm thinking about. Anyone else got questions or answers that might help others understand chronic pain? 
    - What words do you use to describe your pain? (There may be several different types of pain.) 
    - Why do you think of your pain as chronic?  (I don't want medical practitioner definitions - I want to understand why this person thinks the pain is chronic.) 
    - How does being in chronic pain effect your life? 
    - Has anyone ever questioned your chronic pain? What happened? 
    - What strategies do you use to deal with your chronic pain? 
    - Do you have good and bad days? How do you cope with this? How do you explain it to other people? 

    I'd love to put all our words together and make medics read it!
  • sarah50
    sarah50 Member Posts: 119 Pioneering
    Hi NCL I describe my pain as this imagine everything aches, then imagine random shooting pains in arms and legs then a burning screaming pain radiating out from between the shoulder blades to the base of the skull. Them imagine this goes on day after day after day and night meaning sleep is short and broken. Its so hard to describe pain but as to why we think it's chronic perhaps it's because an ordinary person not trained in medical jargon thinks the word chronic means really bad. I use Epsom salt baths, hot water bottles relaxation techniques pain killers
  • Bluto
    Bluto Member Posts: 5 Listener
    Chronic Pain, Acute Pain , Prolonged Acute Pain , Stabbing Pain , Permanent 24hr a day Pain , every dude on this site has abnormal pain of some sort , pain that if your fit and well you cannot comprehend WHATSOEVER!
    If we were not suffering we would not of created or joined forums like this one.
    Within two years i have gone from being a 6ft 2" physically able construction worker to a wreck,, putting it in layman terms .
    Without going into detail my thumb pains turned into arm pain then neck pains then spinal pains before to long i would regularly be found curled in a foetal position howling in agony with as i describe it , an electrical nerve storm firing unwanted  signals all around my body,, it was awful, debilitating, confidence shattering, and most of all life changing.
    As i slowly progressed through the numerous hospital cancellations , MRIs , CT scans  , Nerve conduction studies, blood tests etc , it was found that i was suffering from Severe Cervical Stenosis , compression of both right and left Ulna , Carpal Tunnel Syndrome in both right and left Mits , Heamachromatosis. Oh and after one of my many MRI Scans i was informed that I was also suffering from an Arteriovenous Fistula in the lumbar area of my Spine that if not operated on swiftly would at best leave me paralysed and at worst ,dead !
    This is now two years on I'm left with permanent nerve damage, am incontinent, am in constant pain, I am not going to get better I am slowly going to degrade.
    This was my prognosis given to me only a week ago at Walton Hospital Liverpool one of the best Neuro hospitals in Europe.
    During this time of suffering, I have been administered a myriad of different drugs, some have helped for a short period, some have had some real adverse effects, physically and mentally , I actually became addicted to morphine and fentanyl, it made me so ill ,more than my physical pain ever did and this was given freely without any explanation about side effect risks or dependancy . 
    Right at the beginning of all of this I made my GP , Consultants , Surgeons etc all aware that i use cannabis,,,, always have since young. everyone of them said , they wished they could prescribe it for me but alas the law denies ,,,,,,,,,,,,,, UP UNTIL NOW! , Its now legal, in medical form for people that suffer like us, not the **** they sell at H&B herbal crud shop , proper medicinal weed that really really does work without any side effects AT ALL, I can only speak for my self , without cannabis I really don't think i would be writing this, it has helped me physically and more so mentally through the anguish of such a quick transition from fit to fucked, and dealing with all the **** that comes with, I.E PIP, Universal credit etc. To me my pain is now managed, my mental state is improving daily , i can actually see a light at the end of the tunnel and I'm pretty sure its not a train this time .
    Thank you maruanja :wink:  
    I do not wish to be perceived as a provocateur with what I have written this is my own personal story of cannabis has helped me .
    regards to all Andy

    They cannot fix what they cannot see or feel but you can :)


  • Zebra88
    Zebra88 Member Posts: 55 Courageous
    Hi... I also have EDS and chronic widespread pain. As you probably know there is not much treatment for EDS except exercise (if you can) and pain management as well as treating other symptoms. I was in the same position as yourself two years ago and simply could not access services that were supposedly available. I contacted my local pain team (outsourced to a Bupa hospital) and asked them what would trigger a referral. They said people get referred if they have been suffering with pain for over 3 months without improvement which is medically defined as chronic pain. I took that statement to my GP who still didn't who the referral and suggested that the pain was affecting me more due to mental ill health. I worked with my therapist who wrote a strongly worded letter to my GP and said I need help from the pain team. They finally did the referral and I am due to see someone there for a medication review next week. I have also had pain therapy with them. Basically I saw a doctor who assesses the level of pain in each part of my body every few months and makes suggestions for treatments. I am allergic to naproxen, ibuprofen etc but I believe they are the best thing to take for EDS related pain. Instead I was put on zapain which makes me sleep a lot so in some ways it's good you can take the anti-inflammatories but if they're not working for you they need to listen to you. I would get someone on your side if you can to make your GP understand that it's not just a case of want but need.

Brightness

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