Hi has anyone had any experience of a Pain Clinic. The reason I ask is my Sons f-i-l has MS. He attends and apparently benefits from it. My son feels it may be of benefit to me as my RD is uncontrolled.
Thought I would throw it out there. Hope it makes sense fog has settled in the brain this morning.x
Its okay as long as you can remember what was said and ican't remember what i did yesterday. Give it a go,nothing ventured nothing gained.xxxx
Thanks Sylvie do you need a referral from the rheumy team ( if you can remember) xxxx
Yes you will,just ring them up and ask them to refer you.xxx
Thank you.xx
I've no personal experience but the GP I saw this morning (for neck pain & headaches, OA not RD) has suggested maybe I try the Pain Clinic if her suggestion of a plan increasing my amitriptyline dose isn't successful. My h has gone through everything our local Pain Clinic had to offer but he's intolerant to so many meds all that was left was mindfulness & meditation. He has said though that the pain relief prescriber is excellent, she knows how certain meds work together & which don't so suggests I take her up on it if I don't find some relief changing my med dose/time.
I would say ask about referral if your GP or Rheumy isn't concerned about your pain relief needs. If it's uncontrolled RD I would think the ball should be whacked firmly in your Rheumy's court but you know what's causing the pain.
Good luck & I hope you get somewhere, constant pain is so wearing & if at all possible need to explore every avenue so we don't have to live with it. x
I am seeing my GP tomorrow so will ask for a referral. Disappointing your husband has not been able to find anything to relieve his pain. But positive his views on the pain relief prescriber.
My pain is the RD my wrists and hands are always sore as are my feet but over time you learn how to turn them, how to hold a book and your limitations on what you can and cannot lift.
But my knees in the past have always been tender and sore but now they are swollen and extremely painful as are my ankles. Feet like yours very swollen. So my mobility is compromised making it difficult to walk and stand. I have not been outside since Friday ( not like me at all) but you get to the stage were my energy is going into the pain rather than anything else.
Do not intend to sound sorry for myself I am not just frustrated like many others, waiting for the moon and the stars to be in the right setting so I can start on the CIMZIA.
X
Sorry smithfield I missed your reply. Did you have any success with your GP referring you?
Hi nmh Tried to send you a message but it failed to send.
Yes saw surgery lead yesterday and what he lacks it bedside manner he makes up for in being through.
He has referred me to the pain clinic but as everyone knows there is a long waiting list. But probably of equal importance he has looked a my almost none existent pain relief and prescribed liquid morphine for when the pain is unbearable and to help at nights, increased my morphine patch to 10 from 5 .And prescribed Naproxen .
I do not expect to be totally pain free but comfortable would be good. So fingers crossed.
Thank you for asking and take care.x
I suppose you can put up with his lack of communication skills as long as he's thorough! Pleased he's set the ball rolling though for the pain clinic, you must have been due to be seen again to increase your patch dose mustn't you? Mine was done over monthly reviews so maybe if you feel the 10mcg doesn't quite do it you could ask to try, well I went up to 15 after 10 because 20 was too big a jump. I hope the morphine eases your worst episodes & the naproxen works on your inflammation too. Comfortable doesn't seem too much to ask!
The weather doesn't seem to be getting any warmer for the bank holiday but I hope can you make the most of it anyway! x
Yes I was due a review on the patch. And I guess they take it in stages.
Bank Holiday can probably expect snow.
Enjoy your weekend x
If your RA is not well controlled, then you really need to get the rheumatology team dealing with that. Pain clinics can be really useful, but they don't do anything about disease control - they are really there to help you deal with the residual pain that might be left after everything possible has been done to deal with the cause of the pain. For example, for RA, a pain clinic would be quite good to help you deal with the pain that comes from permanent long term damage, but less good at controlling any active disease. So, my recommendation would be to ask for a complete review of your treatment by the Rheumatologist or RA nurse first, then if nothing else can be done, ask for referral to pain clinic.
Yes, I'm currently seeing the Pain Clinic. It's not all about pain killers and drugs. It's more about accepting you have chronic pain and how to manage it using pacing, gentle exercise, stretches, dealing with stress, fatigue, relaxation techniques, breathing in a square, distraction, sleep etc.
Part of the 12 month programme is to attend a 4 hour seminar discussing the above. The NP's mentioned drug companies only ever expect 30-50% efficacy from pain killers and, any beneficial effects of opioid drugs tend to wear off with long term use. The whole emphasis of the session was about managing pain yourself, not relying on too many drugs and accepting there is only so much help doctors can give you.
They supplied lots of self-help websites to look at too.
Thank You Boneyc, That is very helpful and posit
Thank You Boneyc, That is very helpful and positive and it sounds very much like a holistic approach.
Thanks again
I had a 6 month wait for my 1st appointment with Pain Clinic, and was told the whole process takes a year. So far, I've had the initial consultation with a doctor. He ordered an MRI, been back to talk with a Nurse Practitioner, had the 4 hour seminar, now I'm waiting to go back to see the NP in June and awaiting an epidural in my back with the doctor, was told approx. June (6 months wait).
The holistic approach you described appeals to me. I have severe RA I do not expect pain relief to take the pain away completely. But ways of managing it so I felt more in control must surely be beneficial.
Hi smithfield
Ok, I'm not trying to sound like I'm in competition here, but in order to give background....
I have RA (or D whichever you prefer😀) and over the past 5 years I was concurrently the main carer for our 2, then pre-school) children and suffering from a steadily worsening Vagus (meaning the foot points outwards, old term knock-kneed) left knee deformity. I was also 'too young' for replacement. So I was told to put up with it for as long as possible.
As you can imagine running around after 2 little ones was not easy and very painful, but I had no choice. So over a period of 3-4 years the pain meds I was on went from dihydrocodeine, which was effective but limited to 8 x 30mg tablets a day. I was forever running out early and despite being mainly supportive my GPs said they are not allowed to prescribe more than that.
They added in Amitriptyline (can't remember dose) and Pregabalin. Eventually they changed the dihydrocodeine to morphine because there is no limit to the amount of morphine they can prescribe.
So, my knee got replaced, the pain went off a bit, I started reducing my pain killers. I got off the Amitriptyline first, and then began the most painful year of my life so far. I had a slipped disc. I'd had one before which was very painful but only lasted 6 weeks in total.
This didn't go off. I stopped reducing my painkillers. By this time I was on 600mg of Pregabalin and 300mg slow release morphine + up to another 350mg of instant release morphine 😳😱. In other words approaching a gram a day. A heck of a lot.
Then I woke up one morning and literally couldn't walk. I was in agony, my legs were paralysed, I had pain from my shoulder to my toes.
Long story shorter, I had surgery on my spine, I improved rapidly for a month, but still had lots of pain. Then it happened again, only worse. This was last August. I am still battling with this one. I had more surgery to prevent it getting any worse. I have had 4 injections into my spine / nerve roots. I have lost a lot of muscle in my legs / glutes. I have been, and still am in considerable pain.
I was advised to go to a pain clinic about 6 months ago, and unfortunately for me, my personal experience was - why did I bother? The 'doctor', for that was his job title, basically told me I was on too many painkillers and I should get off them. He gave me a piece of paper about weaning off opiates. He showed me the door and then sent a letter to my GP telling them what he told me. Luckily they paid as much attention to it as I did.
Anyway fast forward till Xmas last year, I decided to reduce the pain meds following an injection that gave me some relief from the pain. I have now reduced the Pregabalin to half historic levels and the morphine to a quarter. Still a lot, but nothing like I was on. I have been seeing a Personal Trainer and attending the gym. I am slowly getting some strength and relief from the pain, but the pain clinic were not a very helpful part of the process.
I was gutted as I had heard good things about pain clinics and the hospital it is at was where I had my knee done, very successfully.
Still worth a visit, I just hope it's a more positive outcome than mine was.
All the best
Ade
Hi Ade Nothing wrong with a bit of healthy competition or unhealthy in our case.
I read your post three times to absorb the history of what you have been through and indeed what you are still going through. I am so pleased the knee surgery helped and the personal trainer.But what a battle I do not honestly know how you coped with two young children but you did but it must of been at a cost to yourself.
I think like the meds we are on they work for some but not others and I guess the pain clinic is the same but you gave it a try and I feel I must as well.
Whether it works or not the support available on this forum so freely given helps me so much.
Thank you for taking the time to reply and I hope you continue to manage the pain.
Definitely worth a go. I was hoping they would at least send me on some pain management / exercise classes or something.
It's funny how different people's experiences of different aspects of treatment / pain management can be. Well, not funny exactly. Interesting. Who knows, I might've caught them on a bad day, but the strange thing was I got the impression he was a fairly senior doctor.
I have found a definite reluctance among the medical profession when it comes to prescribing strong pain relief. They always seem to think you are seeking it out (as if I'd deliberately got myself in that state 🙄).
Good luck.
Ade
Yes I have the same feeling ,you feel as if you need to crawl in to get some pain relief.
That is what I am hoping for that is what I am hoping for, some exercise ways of self managing pain and possibly meditation. I think it was Earthwitch who had that holistic treatment at the pain clinic they attended.
I think there is a lack of consistency across the board on clinical intervention.
I worked for Social Services and no matter how tight the criteria it was open to interpretation by individuals and rightly so in some situations. One size does not fit all.
But a base line of consistency would be helpful.
Pain Clinic and other assorted short horror stories!
Clinic appointments
PAIN
