Chronic pain syndrome questions.

mellman01

Well I have OA and Chronic pain syndrome and I must say the latter is the biggest bear in the room.
So a list of questions to those with C P S.

1) Does it flare ( it seems to do just that to me)
2) Does your medication fail to stop it sometimes, I’m on Gabapentin been on it for a few months but it failed me last week.
3) Is C P S considered a serious medical problem?, I seem to get blank stares from most medical people, only the Neurologist seems to understand and more importantly believe me on this one.
4) Do you find it can be so painful you can’t function normally, ie even moving round the house on a bad day.
5) Do you find when it’s active it drags your mental state down dramatically.
6) Does it get more intense as the OA gets worse over time.
7) Does the DHSS recognise it as an illness in the first place.

minky67

Hi Mell, I have both OA & CPS.
CPS for me comes under the condition bracket of Fibromyalgia so ive been told.
I find the fatigue varies & so does the stiffness, some days im just stiff others im so stiff i can hardly move. Im always in pain, varies from bad to chronic day to day.

I find the pregabalins better than the gabapentin's to treat this. Im high as a kite some days but it does make daily living a little easier.it only helps with the electrical type pains in my neck,back & shoulders.
Nothing seems to help with the stiffness though.

Im not sure about it being considered a serious medical condition. Ive just been told i have this by the pain clinic, along with the Fibro & severe tendonitis etc etc.. :roll: You could try asking your gp about it.

yes it does stop me functioning properly, i shuffle round the house. It stops me doing alot of things.

Mental state.. i find the pain makes me very moody, down, i dont want to talk to anybody, just want to be left alone as i cant be bothered & some days i'll bite everyones head off for no reason. you could ask for antidepressants if it gets too bad.

Im not sure what meds your on, im on Pregabalins, slow release tramadols & normal Tramadols,Diclofenac,paracetamols, Amptripyline & i have Oramorph for a back up. You might be able to add something else in for your pain relief.

Thats about all i can answer there, if you want to ask anything else you know where i am.
Sorry your suffering Mell, try to keep your chin up & i hope the meds start to help you soon. Good luck, debs

barbara12

Hi Mell
i think debs has said it all really, but why dont they call it fibro, then it can be taken more seriously with employers,
I dont have CPS or fibro....well I dont think I have, so I cant really help with any advice, but Mel you keep on at your GP, and ask him what is the difference between the two.
Hope you get some relief very soon
Barbara x

mellman01

Hi Deb's and Bab's, bloody does my head in so it does.
I am in the shuffling phase right now been Gabapentin for a month before that I was on the other stuff but it was horrible turned me into a zombie, well a spaced out one, I thought I had it cracked at last but now the Tusnami of pain has come to my shores yet again and I feel like poo, both lower legs are numb tingling and white hot yet also feel kinda cold at the same time,but hey no crushing pain!!.
I also find it mentally destroy's me takes me apart bit by bit each time it comes it's the bloody same I have no defence against it no matter how hard I prepair, at the end of my tether with it just now.

tjt6768

I hope that you can get some answers Rkid..

You know where I am in thi needs mi ya big soft southerner... Lol

Ya pal

Tony

fudge

Hello mellman, sorry I don't have any answers, can only sympathise with you.

It is totally debilitating and seems like a vicious circle most of the time, meds for pain that in turn numb up the brain and thinking process, all very frustrating and a seemingly endless nightmare of an existence - life it certainly isn't :sad:

Think maybe you have to get the right balance of pain relief, and try and keep the brain in functioning mode as well to rationalize things, easier said than done :!:

Life on a tightrope it seems to me, wind keeps shifting and goes from breeze to gale force and we just have to keep going on best we can.

Hope tomorrow is a better day

fudge

barbara12

Hi Mel
Pain is such a swine...sometimes you think you are on top of it.....then back it comes...I take the same meds everyday.....some days they work...other days it has if I haven't taken them....not a clue why...can you not ask your GP for something to top up the meds when it is really bad....or will they get in the way of your work.
I did stop the gabapentin for a while, but god did I know about it.....
But if things are that bad, go back to your GP, I know its embarrassing having to keep going back....but that what they are paid for...
Take care and let us know how you get on
Barbara x

bubbles

mellman01 wrote:

Well I have OA and Chronic pain syndrome and I must say the latter is the biggest bear in the room.
So a list of questions to those with C P S.

1) Does it flare ( it seems to do just that to me)
2) Does your medication fail to stop it sometimes, I’m on Gabapentin been on it for a few months but it failed me last week.
3) Is C P S considered a serious medical problem?, I seem to get blank stares from most medical people, only the Neurologist seems to understand and more importantly believe me on this one.
4) Do you find it can be so painful you can’t function normally, ie even moving round the house on a bad day.
5) Do you find when it’s active it drags your mental state down dramatically.
6) Does it get more intense as the OA gets worse over time.
7) Does the DHSS recognise it as an illness in the first place.

Hi Mel, I also have chronic pain syndrome and or Fybromyalgia, the Rheummy linked them both under the same roof on his diagnosis.
Does it flare, well, yes, I think is does, sometimes I just cannot do something, be it walk another step, put washing onto the airer, it hits like a steam roller and stops you in your tracks and you have to rest.
Medication is about as good as it can be, either gabapentin or pregabalin, which are the most used for CPS/Fybro. They work to a point, but they are not miracles in a packet and sometimes they seem to be inefective, no matter what you take. Again, you have to stop, rest, go to bed, sleep, whatever eases things.
As far as I know it is a recognised medical condition, as it affects a person's ability to function in what would be a "normal" manner, ie drive, work, etc.
It seems to go hand in hand with either RA and or OA, it is depressing, very much so, hence many of us who have OA or RA take a low dose of antidepressants to help with the lowered mood. Amitryp is often used to help with neuropathic pain, it does help a bit. Pain is very wearing and also difficult to get under control, sometimes it take a while to sort the medication out and work up to the right dosage.
You have all my sympathy - together we all carry on and help each other, through good and bad days - You take lots of care XXX Bubbles