Re: RLS Patient Symposium
Posted: Fri Oct 05, 2018 5:07 pm
Quote from Views ""I have often said that if only the researchers would read the posts here, they'd get a whole 'nother perspective. I also think they'd be surprised by what lengths we go to - hoarding medications, trying crazy things, and potentially doing things that could cause harm, all because we are so desperate.""
Views.... Just picking up on your comment above.
Last month I attended my GP, there are several new and ongoing issues that need attention. This GP is not my usual GP who was pretty helpful in as far as he acknowledged what information I would provide for him. Circumstances a few months ago led me to attend a young lady doctor who is now permanently with the Medical Practice and I feel that it was a welcome change. She made comment that she would never prescribe a DA as first line treatment for RLS and several other comments that led me to believe she was not totally ignorant of the issues with RLS.
Anyways..... whilst attending with her a couple of weeks ago with regard to burning and slight numbness in my lower legs since starting a blood pressure medication we got onto the subject of my general intake of medication. My meds included Cocodamol 30/500 plus Tramadol ER 50mg x 2 daily. Doctor said she would like me to consider coming off the Tramadol. Indeed my feeling rightly or wrongly was that it didn't do a lot for me and so I was really quite happy to consider this. So, no more Tramadol ER and I started right away to wean myself off it, haven't had any Tramadol for the last 5 or 6 days.
I also brought up the issue of the Cocodamol 30/500. It has always concerned me about the intake of the 500 of paracaetamol as it does nothing for RLS but does affect the organs. (I think it is supposed to make the codeine work more efficiently??). She agreed to change me over to Codeine Phosphate and I've been taking it at the same time as coming off the Tramadol. I have 10 pills of 15mg codeine per day with her hoping that I can get away with 8 or 9 pills. (plus ropinerole)
To date I'm minus the paracaetamol and the Tramadol.
I do think there has been a little more breakthrough of symptoms but I'm getting by .... Just about. To be expected really with the Tramadol gone and no increase in the Codeine to cover it. And I do feel emotionally good to have reduced my meds intake by two that were on the list.
Sorry, this post has become longer than I intended but I felt the background is useful information and relevant to Views' comment above when I say - Doctor told me to hand into a pharmacy any Cocoamol 30/500 that I might still have in my possession. Yes, like that's gonna happen! It is so useful to have a few extra when certain circumstances arise, an air journey, the movies, a social setting where we really need to be able to sit at peace. It's called trying to achieve some 'quality of life.'
There also was a time very recently when I ran out of a couple of days Co-Cod and my dear friend had some Co-Co 10/500 because hers made her puke. We have spoken at times here on the discussion board about the security of having a stash, my stash had been depleted completely.
I now have a stash and don't feel so vulnerable.
I don't advocate that any other person should do this regarding a stash, but it is what I did.
As Views states above..... ""hoarding medications, trying crazy things, and potentially doing things that could cause harm, all because we are so desperate"" ----- I hold my hands up.
Views.... Just picking up on your comment above.
Last month I attended my GP, there are several new and ongoing issues that need attention. This GP is not my usual GP who was pretty helpful in as far as he acknowledged what information I would provide for him. Circumstances a few months ago led me to attend a young lady doctor who is now permanently with the Medical Practice and I feel that it was a welcome change. She made comment that she would never prescribe a DA as first line treatment for RLS and several other comments that led me to believe she was not totally ignorant of the issues with RLS.
Anyways..... whilst attending with her a couple of weeks ago with regard to burning and slight numbness in my lower legs since starting a blood pressure medication we got onto the subject of my general intake of medication. My meds included Cocodamol 30/500 plus Tramadol ER 50mg x 2 daily. Doctor said she would like me to consider coming off the Tramadol. Indeed my feeling rightly or wrongly was that it didn't do a lot for me and so I was really quite happy to consider this. So, no more Tramadol ER and I started right away to wean myself off it, haven't had any Tramadol for the last 5 or 6 days.
I also brought up the issue of the Cocodamol 30/500. It has always concerned me about the intake of the 500 of paracaetamol as it does nothing for RLS but does affect the organs. (I think it is supposed to make the codeine work more efficiently??). She agreed to change me over to Codeine Phosphate and I've been taking it at the same time as coming off the Tramadol. I have 10 pills of 15mg codeine per day with her hoping that I can get away with 8 or 9 pills. (plus ropinerole)
To date I'm minus the paracaetamol and the Tramadol.
I do think there has been a little more breakthrough of symptoms but I'm getting by .... Just about. To be expected really with the Tramadol gone and no increase in the Codeine to cover it. And I do feel emotionally good to have reduced my meds intake by two that were on the list.
Sorry, this post has become longer than I intended but I felt the background is useful information and relevant to Views' comment above when I say - Doctor told me to hand into a pharmacy any Cocoamol 30/500 that I might still have in my possession. Yes, like that's gonna happen! It is so useful to have a few extra when certain circumstances arise, an air journey, the movies, a social setting where we really need to be able to sit at peace. It's called trying to achieve some 'quality of life.'
There also was a time very recently when I ran out of a couple of days Co-Cod and my dear friend had some Co-Co 10/500 because hers made her puke. We have spoken at times here on the discussion board about the security of having a stash, my stash had been depleted completely.
I now have a stash and don't feel so vulnerable.
I don't advocate that any other person should do this regarding a stash, but it is what I did.
As Views states above..... ""hoarding medications, trying crazy things, and potentially doing things that could cause harm, all because we are so desperate"" ----- I hold my hands up.