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Posted 3/5/2015 8:41 AM (GMT 0)
Hi everyone

I used to post on here a year or so ago, maybe longer. I have been meaning to come on again but have taken a very long time! I hope everyone is ok (as can be). Look forward to catching up.

Since i last posted i have been ok painwise, just exhausted but at least the pain has been reasonably well managed. I have moved country again, to uk as life in france was rather hectic and not helping things at all and have been out of work and trying to start over here again so im sorry ive been absent for so long. Forgot how stressful it is to move!

Ive found a job now and most other things seem to be sorted over here. I have found a nice GP here too. That was my main concern about moving country, finding another doctor!! she does believe me that the pain is real and also said i did the right thing bringing all my documents from abroad to prove everything. However she does seem keen to get me off opiates which i am not keen to try at all, only because for me they are the only thing that works. I am so sick of trialling meds that dont work and i feel ive done all i can to deal with the pain and this works best. I dont see the point or have the energy to try anything new and im not needing to increase my dosage (have even slightly reduced) nor getting any side effects.

Her argument is longterm this is not ideal as im young. For me any possible longterm effects do not come anywhere near to being in pain and not able to work again, plus i cant find too much info on bad longterm effects of taking them just for pain. I am prepared to consider maybe reducing on better days and just taking the higher dose on bad days or something like that but to not have any relief at all i cannot imagine. I honestly have tried most things and nothing else worked. Anyway i think she is reasonable and she has said dont worry we wont take you off your meds but still it is making me extremely anxious that i have to go through this all again. If anyone has any advice about how to voice my concerns and be heard id most appreciate it.

A friend said to be upfront with the GP and say im worried ill be taken off the meds and my quality of life will not be good.

Thanks heaps. Sorry for the long post. Its nice to be back again xx Di
Posted 3/5/2015 4:00 PM (GMT 0)
Wow, its been almost 3 years since we last heard from you Di, hopefully those were some decent years for you.

I think the quality of life issues are very important for a person that suffers with CP. I do not remember what your medical issues are, however, that is what any dr will look at when it comes to rxing pain medications. Yes, the age factor plays a big role, especially if the person is young. The drs all say if they are started on strong pain meds at a young age they fear they will run out of medication options that will work for the person. This is what we hear a lot. I think being honest with the dr is the best way to handle things. Let us know how things turn out. Take care.
Posted 3/5/2015 4:52 PM (GMT 0)
Hi di43,
Do you have any papers that show you've been through different meds already? I really hear you on the Dr's statement about long term opioid use because I believe that opioids are safer long term than the things like Nucynta and Tramadol that they want us to be using. I've been on a rather high dose of Oxycodone for 8 years now, it's for Cancer pain, and I am put through a full and rigorous physical and blood scan EVERY MONTH and I am still in fine shape. The specific organ they worry about is the liver and they check my liver function and platelet levels closely . . . No damage or deterioration in 8 years. That should be long enough to tell especially since I am on such a high dose. The damage done to your organs by things like Celebrex or even Tylenol can be spotted within that time. Also, I have never had a problem with addiction and I've had plenty of chances to find out due to the irregularity of supply of my meds here. I am currently in my third month of under medication due to Insurance companies refusal to grant me a prior authorization for OxyContin but I'm not having fits of craving, im not out on the street trying to buy replacement drugs . . . I'm just in more pain than I should be.

What part of the UK are you in now. I lived in Godalming, Surrey by Guildford and its famous clock for about a year in the late seventies. I probably wouldn't recognize the place now. Good luck with your meds . . . Q
Posted 3/5/2015 8:23 PM (GMT 0)
Hi Susie - lovely to hear from you - and Quincy

Oh dear i thought a year or so but not three! Dont know where the time went.

Thanks so much for your replies. Yes I think honesty is the best way too. Yes I have all my notes from previous doctors so I might bring them again to show her.

Thats very helpful to know why the argument about being young is used so often so I can think of a reply - i havent had to change my meds in five years since they found the right one and dose and I can say that I dont want to increase them. Also really useful to hear about your experience Quincy and how they have not caused you any ill effects. The doctor was reasonable when she wanted me to go to a vulvodynia specialist again and i went back and said just honestly that i didnt think it would help to go again and i thought id see if i could reduce my dose a little bit so she said ok we can just deal with it ourselves without you going to see them. But last visit she was mentioning me going to a pain specialist again and saying shed like to get me off opiates within a year.
Im open to a pain specialist as i guess they can confirm that im doing everything right. Just the last time i saw one who gave me the same arguments about being young and was trying to push me on to lyrica and said id put on weight (would get another health problem!) but at least id be off morphine. I went to my doctor at the time who pretty much laughed at the specialists suggestion and then said he agreed with me. I could say ill go to see one as long as it is my decision how i treat the pain and they dont force me into anything.

I guess i could always try another GP, just dont want to look like im doctor shopping. My current one thinks im on a very high dose (only 15 mg oxycontin twice daily plus oxycodone for breakthrough) but previous doctors and pharmacists have said thats not a high dose so perhaps i should get a second opinion.

Anyway thanks for the advice and letting me vent. Its nice to be back here. Hope your pain is ok. Di xx
Posted 3/5/2015 11:02 PM (GMT 0)
Unfortunately, pain does not discriminate with the age factor. Young people in the states hear the if we start you on pain meds at your age now we will run out of meds eventually that will manage your pain.

I am not sure how it is in the UK, but here in the states we have 2 type of pain mgt drs. One does nothing but injections & procedure & does not rx pain meds, then of course the other does the same but will rx pain meds if deemed necessary. It sounds like the one you saw was anti-medication. Worse case scenario is you can always consult with a different one.

Most of us here at the forum are under the care of a pain mgt dr because they are the drs that best know how to treat chronic pain. GP's rarely will handle a chronic pain patient these days because the DEA is involved. The GP is not staffed or equipped to follow all of the guidelines the DEA recommends for chronic pain patients, therefore the GP tells the patient I am referring you out to a pain mgt dr.

Good luck with whatever you decide on.
Posted 3/6/2015 12:28 AM (GMT 0)
Welcome back and unfortunately very few d
DRs understand CP any better than the next door neighbor does. So in saying that your stable on meds,make a move abroad,go back to work,etc,etc gets a Dr to thinking that maybe you don't have as big a need for the meds as you once did. They can't seem to grasp the fact that we are able to do what we do because of the meds and GP's are going to likely be on the furthest of the understanding scale then say PM is.

It is however a wise choice to titrate down some if you can and fill in the gaps with other modalities when you are somewhat stable and functioning well, you always want to leave yourself "growing room" with narcotics long-term especially given your age.

Another factor is long-term use and what problems that can arise. Kidney and liver problems are contenders naturally but ones we don't think about but are no less problems are hearing loss,loss of taste and early onset of dementia. Of course tolerance can be a issue as you age and possibly need treatment for greater pain causing issues.
Posted 3/6/2015 8:31 AM (GMT 0)
Hi Vickie and Susie
Thanks for your replies. Very helpful. Think i might be best to chance it again with a pain specialist. Yes the GP also mentioned that since things were going well its a good time to get off meds, even though I'll be back to where I was a few years ago, so I'll have to get across that things are better in terms of my lifestyle but still struggling.

I know this is a huge generalisation but Ive found male doctors a lot more sympathetic than females at least in regards to meds than females with vulvodynia.

I read on another post that It is a good idea to write everything down and also found some download sheets where you can write down the number from 1-10 on the pain scale each day and record what the pain felt like etc so I'm going to start doing that every day so I can show my doctor how it is affecting me.

Quincy, I am in London. Its a lot more relaxed than France. Seems to be a good lifestyle change. I haven't been to Surrey. The clock tower sounds lovely.

Take care,
Di xx
Posted 3/6/2015 5:30 PM (GMT 0)
Hello di,
I so agree with. You on the pace of London life and the UK in general. I got along there by working on old homes and such, under the table type payment since I didn't have a work visa. The countryside and country people were so welcoming to this Yank.

I was Rxed Lyrica once but it didn't do anything for my Osteo-arthritis. I dedited to try it as the adverts claimed it would stop foot pain, they didn't diffentiate Osteo pain and neural pain however. I've read here that a few people have been more satisfied with the much cheaper Gabapentin for peripheral neuropathy if that's is what you have. Best of luck . . . Q
Posted 3/7/2015 9:38 AM (GMT 0)
Hi Quincy
Yes its a nice vibe over here! Your time in uk sounds wonderful. I found it very hard to get a job at first but since then i have found jobs that i really love which i dont think has ever happened before! It has helped my mood immensely living here. Im also living in a house with a cat again so that is helping a lot too.

Thanks for your thoughts on lyrica. Im a bit more confident about the GP appointment now. Ill post after it.

Hope you have a nice weekend!
di
Posted 3/7/2015 7:35 PM (GMT 0)
Hi Di,

I thought I would just give you a small piece of advice that I have had to utilize in managing my pain medications - a pain log.
Sometimes when you go see your doctor, all of your thoughts, issues and problems don't come to mind in discussion of your care. I find that the log is virtually priceless in giving your doctor real-time examples of how you have felt, the impact of your meds and a timeline to support possible trouble areas in a day's time.

Hope your appointment goes well and you get on the right track for pain control.

Hugs from Texas,

Pam
Posted 3/7/2015 8:36 PM (GMT 0)
Hello di,
How nice for you, with all the time we spend at work what a plus to be enjoying yourself. I had a Fine Art picture framing shop, appt only type deal and kept it going for 25 years and though there were some rough patches being self employed I couldn't have enjoyed myself more. I had artist customers and galleries only and they would usually let me design the shows, what fun! The Cancer causes me so much pain and fatigue that I had to close it down 8 years ago but the memories live on as does the framing.

We've got two cats, a little girl calico and a big female Siberian Mountain Cat. You can Google that and see pictures if you'd like. They are real sweeties. You sound like you are in a good space after a rough ride, such a relief, huh? My wife and I wish you the best and then some more of it . . . Q & Connie

Post Edited (quincy17) : 3/7/2015 1:42:29 PM (GMT-7)

Posted 3/10/2015 7:14 AM (GMT 0)
Hi Pam and Quincy

Thanks a lot for the tip Pam. I will do that. I've found a download sheet to do so will taken that along today. Yes i find i often forget things or can't get across my point due to nerves etc.

I decided last night that instead of worrying and preparing what I wanted to say i would just relax in front of the tv and have an early night and think that was the right thing. Slept very well so feel well rested. This has been playing on my mind for weeks and will tell the doctor that. Hopefully she will be open minded.

Oh wow Quincy the picture framing shop and art shows sound amazing! What fun. Shame you can't do it any more but like you say the memories live on so that's great. Im so sorry the cancer causes you so much pain. Hope you're doing ok. Yes things do seem to be working out for me. I moved pretty much on an impulse and was so tired and stressed i hardly planned at all and wasnt even sure if i was doing the right thing but it seemed to be the best way to do it. It was such a nice surprise that it worked out.

Oh the cats sound gorgeous. Yes Ill definitely google them. They really help, so therapeutic. Thanks so much. Wish you and Connie the best too. Di :)
Posted 3/10/2015 5:12 PM (GMT 0)
That is great how things are working out for you di, I love to hear about people's success stories. . . Q
Posted 3/10/2015 7:42 PM (GMT 0)
Welcome back Di :)
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