first of all a big hi to everyone. i have been a member of this site for about 18 months now but keep going away and then coming back. i find it very helpful just knowing that we are not alone in our pain and that even though other people may be suffering from different conditions to ourselves we all seem to have the same thoughts and feeling such as guilt, not doing enough for our partners or children and a general feeling of uselessness. aAs i said i have just done a 4 week pain management programme in London and i found it very helpful even though i dont seem to be any better off at the moment it has given me a sense of extra confidence and answered some of my questions that i'm sure we all get from being alone and in pain for long periods of time. it consisted of daily stretch routines and also circuits which is basic exercises, You start by doing each exercise and doing as much as you feel comfortable and able to do knowing that you have the other exercises to do aswell. For example sitting in a hard chair and just standing and sitting down again until you feel you have done enough or circles with your arms outstretched. You then do the exercises the next day and each time you keep a record of the amount of stands/sits or seconds you circled your arms and for each activity you get an average between each day and then minus 20% and this is your baseline. They say that your baseline is the figure that you should be able to achieve even on a bad day ( which we all get right !!! ). I must admit that after 4 weeks of this i am probably in more pain now than before but they did say that it should ease off after 6 - 8 weeks. You then do a very gradual but remember to keep it realistic increase of your exercises so for example if you managed to do 10 stands before it got uncomfotable then you may want to increase it by 1 extra stand every 2 or 3 or 4 days or even by 1 extra stand a week. The course was obviously far more than just that such as learning about our bones, x-rays, nerves etc and also phsycology and thoughts and feelings. It was a very intense course with a lot to take in but worth it i feel.
I also agreed to reduce my medication and have started to very, very slowly reduce my oramorph. iu have already stopped taking 8 x dihydrocodeine a day and also 2 x diclofenic a day too. I am still on vast amounts of morphine on top of the oramorph but one day at a time. By the morning i will have reduced my oramorph by 10ml in total. I still take 4 x 20ml of oramorph a day and wondered how it would be if i stopped the oramorph altogether. Does anyone out there have any idea how that would be? Well, good luck to you all and remember, " your only human and just take it one day at a time".
Hello again and thanks so much for sharing your experience. I hope the benefits will continue to increase and that your pain will be better managed.
I encourage you to never go cold turkey off a medication that is unless you are instructed to do so by your physician......even then you will require monitoring and medical support. If your physician agrees I would continue to slowly decrease your dosage....but again, always consult your physician.
Please let us know how you are doing. I'll be interested in hearing the end results of this program and following you through the process.
thanks for replying and i will try to come back more often. Actually, one of the really good things to come from my pain management course was that i was with 9 other people, all of whom had severe pain but different conditions. It was a big help that although we had different conditions, we all seemed to have a lot in common such as the thoughts we think and the guilt we feel. The fact that we all seemed to suffer from bouts of depression all be it in different degrees. Just belonging to the group was great as we didn't have to put on a front and if we where in pain we could just talk about it and support each other. We have swapped E-mail addresses and so far we have stayed in touch even though my e-mails have been more of a comedy run down of what i have been up to but they reply saying that it cheered them up to read it so thats my aim.
i stopped taking my oramorph yesterday morning and i have made it to the second night. I have been suffering from the sweats and the chills and the constant feeling sick but i knew this was going to happen and i think i'm doing ok so far. While at the pain clinic i was reducing my meds and oramorph was next on my list to cut down and had managed to cut it down from 4 x 25ml doses per day to 2 x 20ml and 2 x 15ml per day. i had talked with the med nurse about coming off my meds and i will be seeing her again in 2 weeks as we have to go back for a 1 month review. I can also phone them if i want as we are still under they're care for 10 months from the date of the end of the course.
Well, as i said i will try and keep coming back so will update you when i do. cheers again, niall.
Attitude and sharing our chronic pain can be so beneficial is this often difficult journey. I am happy to hear there was so much comradely in your PM Group. It makes a difference when you have others beside you.
Chronic pain is chronic pain, no matter it's location. Although I may not completely understand some one's shoulder pain, no more then they can mine, I certainly understand the challenges that pain brings to our lives. When I first came to the PM Forum I would read a post and think, "I could have written that....those are my words.....or my thoughts and feelings."
It is my greatest wish that those with CP come together here....or at least locate another support group. It can make all the difference in the world. Knowing you are NOT crazy and that others experience just what you do can be so beneficial.
Our one time posters are missing so much. MedHelp has provided us a great forum where we can share, learn and gather support and encouragement from others that face the same things.
I am happy to hear of your progress and wish you the very best. Again, thanks so much for sharing.
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