Long time no write, I need some help and or information, my levels have increased and I have added a copy of the meds I am on in the included attachment.
My problem is this, I am at the point where my 600Mg of lyrica and 60Mg of targin a day are not coping with the pain and I have to go back and see the pain Specialist, no I am seeing Professor Sunderage at Penrith and this is not a bash he is a great doctor, but the last time I saw him he said when I needed to come back we would have to look at Surgery, and this terrifies me. So what have people had done, did it work, how long was the recovery period.
I would like to do some research prior to seeing him so that I have some knowledge of the possible suggestions or maybe able to suggest some of my own.
And lastly I am sorry for my absence I miss talking to you all but I am in a very dark hole and I find it hard to reach out and talk to people.
“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.
I don't think 60mg twice a day is a lot of oxy (targin) and especially seeing it doesn't control your pain...
I was on 40mg oxy x 2 daily plus oxy norm 20mg as needed but now I'm on Kaponol which is helping for pain control so much better.
Maybe you need a rotation of medication because of your tolerance and to switch every 6 months I find to be helpful....
I didn't have a choice but to have a double spinal fusion 4 years ago but sadly it increased my leg pain but every is different and if you need a fusion its your choice to have it...I didn't have a choice because I could no longer sit on my bottom for no longer than 3 minutes so the fusion helped in that sense but something went wrong I feel and I feel I left it too long...maybe if I had it sooner I wouldn't be in this predicament..all this pain that Ravens down from my buttocks to my feet, nerve pain.....
I'm glad you have finally decided to get an opinion from a professor in Penrith, boy, I hope the travelling from Coffs Harbour doesn't increase your pain.. Or maybe you're flying down?
Anyway, I'm happy to hear your taking control of your health and that your doing something about your chronic pain!
I would definitely seek a review on the meds you are taking, having been on the meds round about and having multiple meds at the same time, it can be a case of less giving better outcomes, no one really knows how these drugs inter react with one another, as we know everyone reacts differently to how these drugs work, it could be a case of this combination increasing your pain.
Hi Ricky - thanks for sharing your meds with us. I in particular am very grateful. Because I cant get to see any pain doctors as none take cash and I dont have private health insurance and too late to join anyway. So having been told cant mix up opoids or any similar drugs etc then see a list of quite a few of these being prescribed and you still living to tell the tale so to speak. Amazing. I was told could not have Panadeine Forte with Norspan by 2 GP's and had to persuade the one I see now by printing off a bit from Norspan site saying those on opoids already can carry on taking them before allowing me a prescription.
BTW There is a re-badged Panadeine Forte by Sanofi Advent it is called Prodeine Forte. Exactly the same which I am glad as dont now have to pay $22+ levy because there are generics which I have found simply dont work or as I described it and Pharmacist or docs just look at me - they forgot or just saved money by not putting in the codeine
People dont believe me but I can take PF and feel it kick in within 1 minute and unfortunately, also feel it drop out after approx 1 hour and 20 or so mins. And these are supposed to last for 4 hours. Reason why when 1 doc on mainland when over visit gave me Oxycontin and it was a 12 hour time release, only worked for around half of that. Something to do with fact I cannot be put under by giving me a bit of anesthetic and then none, they have to keep it dripping or I wake up and I always drive home after day surgery. Doesn't affect me one bit. I used to get my teeth done under this in UK - and then just pay and drive back to work. Supposed to lie down for 2 hours after and it was this Aussie dentist who told me I cant be kept under and tell all from then on. Good as local same - 2 hour lasts 20 minutes so go in and tell dentist inject and drill - when saw Perth Orthodontist told him and he went in above my crown, Towards end he said look 40 mins now and nearly finished. I gave you a 4 hour one.
Tell a GP blank look and I do always as I think this must affect all meds I take. And reason why I avoid Generics as all of them are weak as Nat's pee or so strong they kill. Now Professor Karen Phelps has decreed same so its official. Ha Ha.
Anyway pain is a real bugbear feel for all of you here. Only if you have it can you feel sympathy real as most haven't got a clue and that' s lonely so glad I found this place. Mind you I think most of you are a lot worse off than I myself.
Only thing is you know what it is and have a name to put to it. Which is helpful. I dont have a clue except the general term arthritis and since 100 types and only 2 they can diagnose well. Again blood test or XRay. others pick from list of side effects of the disease. And I dont have either of the 2 they can diagnose. Osteo or rheumatoid.
I also feel for you Eliza being house bound as I have become almost this, get out now 1 time a week to do things and then suffer for several days from it. I now think now of all the times I could have gone places seen things done things and thought plenty of time for that!
I hope the infusion treatment works out for you Eliza - must be rotten not to be able to sit comfortably even, on top of all else.
And Ricky do come and tell us all what your day is like. Helps I am sure if living alone - I do have a husband to listen to my venting off my feelings. And my joke, Could ask a doctor but................ - as I never get an answer when coming back from doctor and he says what did he say it was etc.
I'd be getting a second (and maybe third) opinion on the surgery. My original neurosurgeon pushed for me to have spinal fusion and then at the pain clinic the neurosurgeon there strongly recommended against it. As it was an insurance case it was then reviewed by a few other surgeons and I didn't have the surgery. 4 yeas later I'm so glad I didn't have it. Obviously that is just me and your situation is different, but the surgery cannot be undone.
I'm in Brisbane and it sounds from other comments as if you might be in Coffs? If you want a second opinion there is a semi-retired neurosurgeon here, who no longer operates and he'd tell you how it is (although he has no bedside manner!). I also have an awesome pain specialist (aneathetist and psychiatrist) and he is amazing for drug reviews. Please let me know if you want their details.
I notice you're on Targin - have you tried Oxycodone? I was on OxyContin and then when they reformulated it I couldn't breakdown the coating and went onto Targin. It was okay, but significantly less pain reduction. I'm now taking the Sandoz generic Oxycodone and its like the original, so heaps better.
The other thing I've found helpful is to take smaller doses more frequently. I take Oxycodone 3-4 times a day and have reduced my meds massively. You may find you get more relief by taking 4 x 15, rather than 2 x 30 (if that's what you do). I did initially have my first 2 doses of the day slightly closer together, but over time spaced them out. Using this strategy I've dropped from over 100mg a day to 20mg (obviously very gradually) and also eliminated Lyrica.
I hope you get some support. Given you've said you've been having a particularly tough time at present, have you thought about accessing a psychologist for some more regular support for a while?
You'll have to decide whether or not they are appropriate for you.
You will also have to realise that your spinal problems may not be the same as others here. For instance a neurosurgeon told me in 1997 that my L5/S1 joint had to be fused. He said that if he did it, I would be back every 10 years approximately to have it re-done. He said if you leave it alone and let it fuse naturally, it will be more permanent and much less painful, but eventually the pain will leave that joint and the degeneration will slowly work its way up your spine, but not to the extent to crippling me.
He suggested I get a good pain management program in place, to assist me during this phase.
Best advice I have ever been given and everything he said has come true.
However, my situation was a simple case of there being no disc material left in the joint, with no real damage done to the surfaces of the vertebrae until the cartilage was worn away. So it was a fairly simple fusing job.
I would never let anyone touch my spine without a second opinion. The risks are pretty big. I have heard of people who have done really well after a joint has been fused. I have also heard many horror stories too. So move forward very carefully after educating yourself.
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)