Chronic pain syndrome

orthoman
orthoman Member Posts: 14
edited 18. Jan 2019, 09:25 in Living with Arthritis archive
Hi all, I have had psiriatic arthritis for nearly 40 years now I,m 54 and have been through all the drugs and am now on my second biologic cosentyx. I have been told that my inflammation is under control but I am still in horrendous pain all over in all joints. They have said that I probably have chronic pain syndrome. Does anyone know anything about this and am I likely to be able to look forward to having a reduction in pain at some point. I take maximum di hydrocodeine. As well as nefopam when required.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I have heard of this and am not surprised you have been diagnosed with it. I suspect I am in the same boat (I have PsA and OA) - with the amount of joint damage that we must have between us it's hardly surprising that we are in continual pain. I don't do a lot of reading up on stuff because I am not interested in the whats and whys but I am sure I have come across the theory that the brain becomes so accustomed to sending out pain signals it can't stop. Mind you, with an errosive condition such as arthritis, why would it? Pain is the body's alarm system - something is wrong, mend me! - some of us on here are beyond mending (and understandably those who have been don't post, who needs people in pain dragging you down when your life has changed for the better?)

    None of the meds I have taken, be they NSAIDs, DMARDs or anti-TNFs have ever reduced my pain levels, the only stuff that dulls it is codeine and morphine. That is their job and they do it well enough (although I don't bother with the morphine, I'm saving that for the really rainy days). Have you spoken to your GP about a referral to a pain clinic? Like all things they vary in quality, mine was not helpful as it told me to do what I was already doing, well=meaning but ultimately pointless. Others, however, have had a far more positive experience. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi dd,
    Thanks for your response. I had something a whilst back which they described as puva pain after about 18 sessions of puva treatment in our dermatology unit. This was really awful and I felt like I was being electrocuted whilst I was sleeping and things like going over pot holes in the car caused major pain in my body. This was really bad for about 3 months but since then I have been in continuous pain in my joints. I think this was the forerunner to my chronic pain syndrome now. I’ve been at the pain clinic and likewise they are well meaning but ultimately not much use.
    Orthoman
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    My pain began in my left knee, then after six years my right knee joined in, now I've lost count because it's everywhere. Stuff hurts, 24/365, that is just the way it is. It is all hidden though, I have no visible joint damage although my knees are now an odd shape thanks to bone growth, people are always surprised that I am in pain because I generally look well (because I am well). Sometimes the strain can show in my face, then they tell me I look tired. For the majority of people pain is something that stops when the trouble is fixed - bunch of amateurs. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi dd
    Yes anyone that gets rid of pain when treated is very lucky. I am like you in pain 24/365 and the level goes from around a 4 at its lowest to excruciating all sometimes within a few minutes. I look well in myself but often look very fatigued and visibly unwell. I suppose this is the problem as people take you and the disease for granted. As we have started to speak about my condition more in the family it has become apparent that I actually do very little round the house. My wife does all the decorating and at the last house all the gardening as well as hoovering and washing and cooking. All I did was work and sleep which I suppose given my condition is not too bad.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    My husband retired around eighteen months ago and has taken over all the shopping and cooking: fine by me! He will also make the bed (without airing it) and any heavy lifting. I continue to be responsible for the laundry, ironing and general cleaning and organisation of the home, he will vacuum the kitchen after cooking but not do the hall or any other room; it's just a different way of doing things and not grounds for complaint. Before he retired I did the lot because he was out of the house for 12-16 hours per day and did weekends too. I was the better decorator than him but now we get someone in: I can't do it and he doesn't want to, the same with the garden. We don't have conversations about it, there's no need: he's watched me deteriorate over the years and we developed a code for when I needed him to do more for a while but, since retirement, it hasn't been needed. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    I was diagnosed with Chronic Pain Syndrome last year after referral to a specialist pain clinic. I have arthritis in my neck and lowet back and my chronic pain syndrome mainly affects my shoulders and my arms right down to my fingers. I have to wear a wrist splint on my right hand to manage the pain there and occasionally on my left wrist too. It can also affect my left leg.
    I have learnt to manage mine with a combination of physio, relaxation/mindfulness/breathing exercises and of course meds! Most importantly I have learnt to recognise my limits and when I need to rest. Mine is also aggravated by stress.
    I hope you get the help you need, as a first step see your GP and ask for a referral to a pain clinic and physio.
    Good luck
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi slosh,
    Thanks for the response. I attended 5 sessions of pain management last year and did get some useful advice re pacing yourself and using distraction techniques and breathing expertises to help alleviate the pain. Unfortunately the pain i,m getting at the moment is horrendous and just doesn’t let up. I’m on cosentyx now and it has helped the inflammation but the pain in virtually every joint is still keeping me awake at nights and making things such as moving very difficult. Today it’s bad in my right shoulder, right wrist and left knee and left ankle but yesterday it was virtually the opposite way round. I really can’t fathom out why I had aching left shoulder yesterday and now it’s ok but my right shoulder today is equally sore. It’s defibately tendinitis I think and I had x rays on my shoulders that showed arthritic changes but I find the shoulder pain very debilitating as it affects my neck and overall comfort when sitting which is all I do at the moment. I’ve had psa for nearly 40 years and it has been a struggle but I’ve worked in the nhs for 37 years. I want to apply for I’ll health retiral but when you apply they finish your contract on the same date which means that if you get refused you have virtually given up your job. I can’t afford that at the moment and think it’s very unfair to be put in that position anyway.
    Thanks again for your reply
  • Airwave!
    Airwave! Member Posts: 2,427
    edited 30. Nov -1, 00:00
    After many reqyests I have been to the Pain Clinic who have sent me on a pain course. I have been turned down for two referrals to a rheummy and now the pain cljnic is suggesting it, we'll see!

    There is a school of thought that says once the path of pain is learnt by the nervous sydtem it carries on sending signals after pain ceases or reduces.

    Whether pain is caused by different illnesses, its all pain.
  • orthoman
    orthoman Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi, I agree with you that it seems that the body can give you the pain even if there’s no inflammation evident. I find it odd that you have been turned down access to a rheumatologist thus should not be the case. However it’s good the pain clinic have suggested it. Let me know how you get on if you eventually get a consultation. I intend to address my issues with my ohsas consultant and see where it takes me.