Help to manage pain?

[Jackieblu]

Hi guys just looking for some thoughts on managing pain! I had an appointment with my consultant today,I have osteoarthritis aswell as Fibro,I need knee replacements as my knees are in a really bad way! Ive had the knee problem for 11+years,Fibro for 10 years! I've obviously been to consultant before who wanted me to go on a pain management course before he would consider replacing my knees! I waited for a long time to go on this course but found it to be very unrewarding! I've since been diagnosed with arthritis in my hips and possibly my hands! Speaking to consultant today he is willing to do my op but I need to lose a considerable amount of weight first : ( but he also mentioned who was helping me with my pain,I said no-one apart from my gp who has since retired and trying to keep myself on an even keel(this site has been a lifesaver) he said I should go back to my medical practice and ask to be referred to the rheumatology dept for some help! Sorry I've went on a bit but how many of you guys get help to manage pain,medication and who from? Best Wishes Jackiex

[TheAuthor]

Hi Jackieblu

I have read your post with a great deal of pain and sorrow for what you have, and still are, suffering with. It is also so rewarding and gratifying that you find the forum so useful as if we can all help one another then we can share the burden of our illness.

I do not know what pain medications you have tried but there are a great number out there for us. As we are all unique individuals who respond differently to medication it is really difficult to recommend any particular medication.

You say that you have been told that you need to lose a considerable amount of weight. I was wondering if they were going to help you with this? I think the nature of our illness, is that it makes any exercise difficult or even impossible. So I was wondering if they were going to fit you with anything like a gastric band or gastric bypass? As this would help you considerably.

I have not had a full knee replacement, but several years I underwent a procedure whereby they removed a lot of fragments of floating bones and used some kind of filler to fill and strengthen my right knee joint. It didn't take long to perform and I was walking better in just a few days. So I hope that this can give you some encouragement?

Most of the members on the forum that I have had contact with appear to go to a rheumatology department and a pain management clinic. Many have also gone for Cognitive Behavioral Therapy, but I have sincere doubts about the productiveness of CBT.

I sincerely hope that everything works out for you and I hope that you are feeling as well as you can be?

All my hopes and dreams for you.

Ken x

[agtf1]

Hi jackieblu, I found local pain clinic (was referredby GP at request of rheumy) to be very supportive when my GP was not. They helped me to pace myself and gave me confidence to learn what I can and can't do and to be kind and honest with myself. They had 3 sections - cognitive, physio and psychological ((needless to say,psych was waste if time!).

I found they helped me to get in control of the Fibro and also supported me emotionally and by writing to my GP and making them listen.

I hope this helps and you get the support you need. Good luck xxx

[paulapips64]

Hi jackyblu sorry to hear of your problems, I'm in the same boat as you I've got oa in most joints now and awaiting knee op.I had a bad accident 20 years ago when I was 29 I've got a lot of metal in my left leg and no cartilage in my knee which have left the bones seriously deteriorated my surgeon is trying to make me hang on as long as possible because of my age it's ok for him he don't have to put up with the pain! I'm now working with my doc to find a better pain relief at the mo I'm taking co codamol codeine and she have put me on mitazapine for depression I think I also have fibro my doc think so too but haven't been diagnosed yet going back to doc again this afternoon coz I'm now getting this stretching thing going on where I have to stretch all my body every 2 mins mainly at night so I can't sleep and it's bloody painful to keep doing anyway I hope that help you a little bit with your problems x

[Hidden]

Hi Jackie I needed a new knee 20 years ago I was told to wait my knee was permanently bent couldn't straighten it at all. I had it done 2 years ago it's the best thing that happened. I can walk without pain in my knee although I have pain everywhere else. You take care xx

[Jackieblu]

Hi Ken,Agtf1,Paulapips64,Cloggs thank u very much for your replies,I have been on 2 pain management and did find some use out of them,pacing etc tho some stuff I couldn't get my head round! I've also had one of my knees opened but it's too far gone for anythin else to be done! It's the fact that I've gone all this time without any help(apart from pain man) towards my pain and doc has basically left me to get on with it so to speak! I didnt know that the rheumatology dept gave ongoing help to patients with Fibro. Thank u all once again,it's good to see things from others perspective and journeys! Best Wishes to u all! Jackiex

[fenbadger]

Hi Jackie. I sympathise with all of that.

Had a new knee myself 18 months ago. Still got restricted movement. It's not necessarily the miracle cure it's cracked up to be. BUT WE'RE ALL DIFFERENT. My consultant said I would probably get 80% back. Seems about right. You don't say what meds you're on. See If they need changing. I was on anti inflammataries mostly until it just seized up excruciatingly. I was offered, accepted but never received physiotherapy until it was too late.

Light exercise is beneficial. Don't get carried away by if it's not hurting it's not working, that's for Olympians and marathons. just keep it moving gently. I had mine quite young because it was so wrecked. If I live long enough I may get 2 more which I dread as subsequent ops lose effectiveness.

The pain thing:- I wonder if you're resistant to painkillers? 2 things, the pain is so great nothing touches it. or your opioid receptors are less effective because of the fibro.I discovered that only recently thanks to Mdaisy and things changed for the better. I had a good talk with a pain nurse last time I was in hospital but it seems other health professionals aren't necessarily on board. I'm twice the size and activity of my 80 year old mum but the dose on the packet is the same for us both. Does that make sense?

I agree with consultant. Go back and rattle cages until you get real help. If I can find those links again I'll post them. Gentle hugs

[steve16]

hello..there is no real answer concerning pain management..after all other avenues have been tried, there is only medication. The stronger the med the least pain but with the unwanted side affects..Try to learn to live with it and somehow still be glad to just be alive.....

[Zorago365]

hey jackie, I also have arthritis aswell as fibro, I was referred to pain clinic at hospital, who then referred me to my local homeopathic hospital, the waitlist is 14 mths, but at least I got to see them eventually, they were wonderful, I think it would be good to go back to your gp and ask to speak to pain clinic, if you feel you dont get any satisfaction,maybe they could refer you to someone else, if your under care of ortho consultants at hospital, they could also refer you to pain specialists. No easy options for anyone suffering from fibro, good luck. x

[Jackieblu]

Hi Fenbadger,Zorago365,Steve many thanx for your replies. Fenbadger im takin tramadol,amitriptyline and for the bad days dihydracodeine (which give me ragin headaches)mefanemic acid,paracetamol,ferrous sulphate and omaprazole.I do take exercise,gentle movements but I'm restricted with both my knees and hips,it's quite difficult but I do try! I did ask doctor about somethin stronger but she was hesitate about givin me other meds as they are addictive! I do know what you mean about bein glad to be alive Steve don't think I do,it's the fact I haven't been gettin any support when I know it's out there,that was part of my point! I'm goin to speak to another doctor now as mines has retired so hopefully get referred to the rheumatology dept and see how I get on! Thank u all once again,as they say it's good to talk! Best Wishes to u all! Jackiex