Chronic pain syndrome

mellman01 Member Posts: 5,306
edited 11. Feb 2011, 10:25 in Living with Arthritis archive
Right I'm sorry if I have posted something similar before but I'm getting a tad old and dappy so you'll have to put up with me waffling on, so have any of you been diagnosied with chronic pain syndrome?, if so what treatment are you having or had and how effective is it?, and do you find it makes you really tired most of the time because I do. Oh and what does it mean in the the way of disability?, ie is it even recognised as something serious or do you find it's more commonly treated a just a slight inconvenience when it's anything but!.


  • madwestie
    madwestie Member Posts: 383
    edited 30. Nov -1, 00:00
    Mellman, i can't help with chronic pain syndrome but being in constant chronic pain is bound to leave you feeling tired. as far as i understand a disability is something that affects you ability to perform everyday tasks.
    I didn't think you were waffling at all. i've never heard of the word dappy..

  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi Mell
    Honestly they give you these diagnosis, and dont explain what the treatment will be, is there no way you can get more info off your GP, like I have said before it sounds so much like fibro, maybe the treatment is the same.
    All I know is that they have to block the pain signals from bouncing back off your brain, not sure how
    Wish I could be more help....sorry
    I hope you get some answers very soon
    Barbara x
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Mell,
    This is a difficult one to tie down. Maybe a referral to the pain clinic would be helpful. As Barbara has said it comes down to damping down the pain signals.
    Pain is the most exhausting thing to have to cope with it saps ones strength so quickly.
    It might be worth giving the help line team a ring.
    Take care,
  • bubbles
    bubbles Member Posts: 6,508
    edited 30. Nov -1, 00:00
    Hi Mell,
    As well as widespread OA, I was diagnosed with chronic pain syndrome, or chronic widespread pain, otherwise known as fybromyalgia. I also have a lot of peripheral neuropathic pain and loss of sensation in hands and or feet (which makes for an interesting walk and a clumsy time in the kitchen).
    The rheummy said I needed to be on pregabalin, up to 600mg a day, alongside high dose co codamol. The pregabalin dulls down the pain receptors in your brain and is used to treat epilepsy as well. It has, like most drugs, some side effects and you need to increase the dose over time.

    That was it really, I was passed back to my GP, who, fortunately, has a lot of time and sees me regularly to check how things are going.
    It is a case of management, sometimes trial and error with medication, fighting the fatigue that goes hand in hand, one minute you feel not too bad, the next you can barely function.

    Most hospitals have a pain management clinic, there is also physio to help with gentle excercises and provide walking aids etc, if needed.

    So, my treatment is pregabalin 400mg a day, co codamol 8 per day, amityptiline 50mg, diazepam 5mg, zopiclone 7.5mg, that is just to keep a lid on the pain and help the muscles relax a little. Some days the medication seems to help, some days they don't work so well.

    I am a potterer, as everyone knows, I potter about, sitting, or standing in one position for any length of time is a no go, keeping your mind occupied can help as well.

    It is such a complex and individual diagnosis, not like a broken arm, where you set it, wait 6 weeks and all is well. Your GP needs to work with you, take time to listen to you and be willing to try different treatments.

    I do hope you receive the help that you need. Yes, it is recognised as a disability as it affects so many aspects of your daily life. If anyone said that it is a slight inconvenience I would give them a piece of my mind and say, you have it, just for one day, see how you fare with it.

    Take care and let us know how things go. XXX Bubbles
    XX Aidan (still known as Bubbles).
  • spacey
    spacey Member Posts: 126
    edited 30. Nov -1, 00:00
    Hi, I have just been diagnosed with this by the musculoskeletal clinic, I am due to see rheumatology next week and will discuss it further but at the moment I am working on desensitizing my sore bits and am having accupunture from my physio. I understand that the brain is sending too many pain signals to the body and am hoping this can be helped - hope you get some answers too.
  • kickyloo
    kickyloo Member Posts: 66
    edited 30. Nov -1, 00:00
    Yes, I have that one too! I have RA and was told by Rhemy that the nerves were so used to giving out pain signals that now they can't turn off. I, like Bubbles, was prescribed the epilepsy drug Pregabalin. I haven't found that it makes me more sleepy or dozey, as I know others have. But I think it has taken some of the edge off. I also take a range of pain killers, but don't find them that useful. The thing I have found most beneficial is my Tens machine, god bless it! It really does give me relief.
    I was also refered to a Chronic Pain Psychologist for CBT (cognitive Behavioural therapy) to help try to manage the pain. I didn't end up following up with sessions (for many reasons which I don't need to go into) but I did buy an extremely useful book that she recommended called 'Overcoming Chronic Pain' by Cole et al. It has a good step by step approach which I have found useful.
    Hope this is some help to you. x
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Mel,

    I answered you somewhere else but can't find it cus the eyes are just ornamental mostly today!

    I get told I am reacting to pain .. getting over sensitive to pain physically not mentally and its the same kind of thing in your case i should think.

    Its caused by long term grinding endless horrendous pain!The nerves decide its worse than it might be if they hadn't been so trounced by it for so long.

    For me one 'cure' was pregabalin to some degree. Takes it down to a normal grinding pain rather than a climb the walls look for a shot gun type grinding pain.

    For you is there any surgery they an do to make it stop hurting so much>? Mine is in the back and neck and so can't be replaced or have bones removed but can they intervene for you at all surgically?

    Its not in your head, its very real and although there is another reason for the chronic pain syndrome I would think yours is the same as mine and caused by pain over load for a very long time.

    Hope that helps a bit Mel? ((( ))) and hang in there Cris xx
  • Nellyphant
    Nellyphant Member Posts: 27
    edited 30. Nov -1, 00:00
    I have fibromyalgia which is a chronic pain and fatigue illness (aswell as OA in hips and knees).

    My GP put me on Gabapentin recently but the side effects have been too much to bear so I've stopped them. I take 150mg of amitriptyline (have done for over 5 years to help with insomnia), 2x4800 mg of ibuprofen 3 times a day and 2x8/500mg co-codomol 4 times a day. Have to back to GP to see if he wants me to try pregalin but I'm not keen. The side effects I had with gabapentin left me incapacitated and to be honest I'd rather have a bit more pain but be able to cope with normal day to day stuff.

    I'm off to see a physio next week who specialises in fibro. There are a couple of great fibro forums that offer a wealth of information and support.
  • mellman01
    mellman01 Member Posts: 5,306
    edited 30. Nov -1, 00:00
    What can I say but thanks all for the replies you lot, to bring you all up to speed I am still waiting to the neurologist to write to me and my GP and she did say something about epilepsy meds but that was 3 weeks back and this week she is on her hol's that said she has been a breath of fresh air, it's been 3 years for me and I am about worn out with it, it all started in 1981 when I had an RTA and that messed up my neck, I have cervical spondulosis and that is constantly painful but the knee op finished me off.
    The neruologist told me the same as Bab's that my RTA in 1981 set up my neurons by constantly sending them signals and the double knee op back in 2008 finished the job off and sent my lickle brain pain centre into overdose, so it white out when the pain gets to much, oh and by heck do I get tired these days even now I could drop off and it's only 3!. Thanks so much for taking the time peeps I apreciate it big time!.
    Oh Chris I know exactly what you mean about the pain making you crawl the walls and looking for the shot gun, I have acctually sat here late at night in agony and drunk as a skunk and thought about shooting my right knee just to stop the pain it's only the realisation that it would be even more painful that has stopped me!, seriously though although I didn't do it I defo thought about it from time to time.
    Oh bubbles I get tingling and numbness in my feet before an attack is it the same for you?, I really had a hard time with that one but it's real and always a bad sign trying to get people especially doctors to understand or believe has been a major effort most think I am taking the rise or just making it all up!.