I just spoke to my Doctor and it was a phone call that has left me rather angry. It appears that he miss read the letter from the pain clinic and their suggestions of how to change my pain meds. Right now I am taking 900mg of Gabapentin three times a day. When I phoned the doctor last week, it was to see if I could get this raised, as I was sure that there was still room to increase it. I had this vague memory that when I was at the pain clinic, that they said this was one of the options that I had. I was rather confused when the doctor said that I was already on a dose that is above the recommended and that I clearly couldn’t have any more than that. It appears that the clinic recommended that it was raised to 1200mg three times a day, that was 18 months ago. So as of lunchtime today, I will be taking the new dose for a period of two weeks to see if it is enough to bring my pain under control. If it doesn’t, apparently, they also suggested that we try changing it to Pregabalin if that fails. I’m angry because the way he told me this today, it sounds as though I should have had the raised dose of Gabapentin ages ago, after all, I went to the pain clinic because my pain was rising. My GP, at the time, wanted to raise my Morphine, by I chose to stick to using the booster pills, as they gave me greater personal control. It has worked fine until the last six months, when I have struggled, not wanting to mention it, because of my fear of having to take even more Morphine. Normally, he is a great doctor and I have no problem with his care of me, but this, well this has angered me. I really wish that when a consultant writes to a GP, that they also sent a copy of the letter, to the patient, that way, I would have known all this and not relied on his memory. It’s totally unfair to ask a GP to remember every detail, of every patient that they have.
Over the last few years, all the old-fashioned paper notes have been transferred to computer systems. Understandably, but unfortunately, the GP system is totally separate from the hospitals one. For a very long time now we have had the right to see our notes on request, which means that you have to go to them, to be able to look through our notes. Being housebound, means that despite having the right, I can’t carry that right out. With it all being computerised, I personally believe that we should all be issued with log-ins, and be able to look at our notes whenever we choose. For someone, like me, who has a complex array of conditions, it would mean that I could keep track of all notes added, all suggestions, and what has already been tried. Consultant only writes to GP’s, either if they have prescribed a new drug, or when they have signed you back into the care of you own GP. Of course, GP’s only ever write to Consultants, when they have a patient they want them to see. The result is, that much is missed by both sides. I wouldn’t have missed these suggestions and I could have spent my time, assessing what might work best for me, plus I would be armed with all the details, that I have long since forgotten. I have forgotten so much, that different doctors ask me about, like the names of the drugs I have already tried, when and what one doctor said about something and so on. I have the time to arm myself with the info, that might make my future treatment, just that bit better. Although I have great faith in my doctors, both my GP and those I see at the hospital, the gap between the two is becoming, more and more visible as time goes on. It’s a gap that I feel I could fill, as could many with multiple conditions.
Clearly, from what I have just written there, I have removed the Duloxetine from medicine list and returned to my normal dose of Amitriptyline. Last night, for the first time since I took that first horrid little capsule, I slept right through the night until at 7:30, when I had to get up to go to the loo. I know I could have gone back to bed, but I decided to stay up, as not only had I slept through the night, but I also actually felt more awake than I had for days. The last four nights supplied only half the night in a deep sleep, and the other half, in a fitful half world, as unpleasant as the days that followed. Today, I feel like me, and that is a really good feeling. To me, I have just wasted 4 days of my life, because of my doctors mistake, as when I spoke to him last week, my request was for an increase in my Gabapentin, not a new drug, that would shred me into pieces. Mistakes happen, but that doesn’t make them any more pleasant.
Those who read my post from two days ago will know, that I had one of those horrid light bulb moments. The words “palliative care” appeared and I was hit between the eyes, by the fact I knew that the day I went onto Morphine, all though they didn’t say it, that I was at the end of the road. It’s amazing how when promoted to think of our care in one way, rather than another, that we happily carry on kidding ourselves. I remember at the time, briefly thinking this is the end, but my doctor waffled on about how there were still options and possibilities, although they didn’t name them. Clearly, their waffle was intended to pull me away from thinking I had reached the point when palliative care, something which is normally linked with the end of life care, was needed, and it worked, partially. Yesterday, that wall crumbled and I spotted the unspoken truth. Oddly, rather than pulling me down, it has left me in a very calm and subdued state, almost as though it removed not just a wall, but one that had spikes on its top. I feel as though the confusion of questions that didn’t quite make sense, are starting to solidify and showing the roots I need to go down, to put them to rest.
I have also been given a few pointers by several different very kind people, I know it’s not like I can make a list, this is an organic process, one that I will, of course, share here. I have also realised, that whether Adam wants to talk about it or not, he will have too at some point, just as I am going to have to get involved with groups like social workers, who I have body swerved at every turn. I’m getting ahead of myself, they aren’t top of my list, but they are on it, yes, I’m still avoiding them, but just like death, there are something’s in life, we can’t avoid forever.
Please read my blog from 2 years ago today – 13/01/2014 – Spasms are not what you think
Two Rooms Plus Utilities 
Pamela,
If I were you, even as a Christian, I would have ended my life way before now. Just me.
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Hi Pamela,
As a fellow sufferer I an identify with all that you write. Just because you are taking morphine does not mean it is the end of your life. It is a way for you to continue to live your life. I for one find you to be of great value and your thoughts that you share so poignantly are well received here.
You are so right re: the computerization of medical records. I have found horrific errors in mine and have tried to get them fixed. Without any response from the Primary Care doctor(s) I am now under the care of a nurse practitioner that RX’s the morphine for me. Don’t give up my friend! God made you and God will take you when the time comes is my belief as a two-bit Catholic.
Your friend, Susannah (dx’d in 1995 with MS; now finally dx’d with peripheral neuropathy some 35+ years after it began!)
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I am a long way from giving up, but I am also at a point where I need to know, if only to put my mind at rest, and to allow me to think through my choices before it is a case of too little time to choose anything. Palliative care is about living, but if we don’t learn and understand what it truly means, how can we know what is best for us as individuals. 🙂
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Hi again Pamela
You give me hope and some of your comments I have taken with me straight to the doctor when I go. Feelings what we go through are often too much to deal with leaving many feeling powerless. However, you nor I are powerless! Thanks for being around and please stay around because I and many others I am sure need your help in the way you are able to provide it. Thank god for being you! 🙂
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Some of the doctors/hospitals, here, in the states use a computerized system called “MyChart”. It’s a system much like you said you wanted, where specialists can add notes to your chart and your GP can see them. And of course, you can log in from home and see notes. It also has a feature that allows you to message your doctor and request Rx renewals. I quite like it, myself. And just so you know, you are an incredible encouragement to so many who, like me, really enjoy your blog. 🙂
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Thank you 🙂
If you have this system in the US now, we’ll probably start thinking about it in 20 years time. It’s all down to cost, the NHS have a small budget for things like this, but I can dream.
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The new place that just took me as a patient (and wow was it not easy to find a place to take me and yes, I have excellent insurance!) has this “My Chart” thing I was told. I really hope it will work out better for me. I am slightly sickened by what I have to go through though. They are now drug testing me every month for illegal drugs and possibly illegal activities that could go with them. They are stupid IMO. It makes zero sense when one considers what someone like me or you Pamela must go through to even obtain these medications! Am I upset re: this? YES.
That said, I had an appt. to go back to a doctor I’d been to 4X to try to get my medications refilled to no avail. I have no need to go back there now but for some strange reason, I couldn’t find the guts to call and cancel out the next appt. with them out of FEAR. You Pamela, yes YOU, gave me to ability to call them about one hour ago and I cancelled it and I will not be going back! Thank you Pamela for giving me the strength to place that call and to be rid of them once and for all!
🙂
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and thank you, for telling me this (((Hugs)))
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The struggle for decent medical care is real, even when you have access to a truly caring doctor. As my friend who has had two lung transplants puts it, you have to be your own advocate! We have had the specialist’s prescribed meds turned down 3x in the last few weeks. My husband needs an upped dose of pain meds and our insurance is denying the specialist’s educated, informed prescription. We will keep praying and fighting. As you know from my blog, I make no bones about my faith. Praying for you on this difficult road!!! (((Gentle hugs)))
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Uuuuuugggggggh, chronic pain is the very very worst. I’m so sorry!!
xox
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While I don’t want to boss you around, please don’t think of palliative care as the end of the road. Truly, it’s an alternative way of thinking for how to get the quality you want out of life, without extending the quantity and making you miserable.
I have been focused on palliative care since I was 14 years old, and put my foot down over having additional surgeries, and I’m now 55. Clearly, if palliative care was a death sentence, I’d be long gone.
You’re right about what the morphine us signals, as that’s one treatment that brings you ease at the cost of additional / different issues rising. But, as you’ve seen from getting an update on your medicine choices from your doctor, and a correction as to dosage, a lot can be done that you would allow to make you comfortable without easing you out the door.
Medical professionals just don’t know how to treat folks that don’t want aggressive care. I was told I was going to die in 1996 “if I didn’t do EXACTLY what my physician wanted me to do”, and yet I’m still here, and he’s still my very much appreciated (but often debated with) primary care doctor.
We’re all going to die at some point, and modern medicine seems to feel that they can put it off forever. You’re not asking to live forever, but rather to live comfortable with whatever time you’re here. That’s not an unreasonable request.
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Not at all, but sometimes it feels impossible. 🙂
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At first I had anger when reading this, then came confusion , and then sadness and uncontrollable tears. My story seems so insignificant in comparison to yours, it’s almost embarrassing to complain about my situation. Despite this horrific disease and its affects on you still reached out to me to uplift me and for this I thank you so much. As far as getting office notes can you take in a recorder or used your phone to record the entire appointment so you have everything that was discussed during your appointment? You can absolutely go up on Gabapentin, I know some lupie sisters that take as much as 2100mg 3x a day, I do believe. But I’m not sure if they are in morphine, that could be the problem. Questioning whether you should be on that high a dose of Gabapentin along with morphine. I take 300mb of Gabapentin 2x a day, Norco 5x a day, and Tramadol 2 pills every 6 hours. If I’m flaring I will take the Tramadol every 4 hours and up the Gabapentin 3x a day. Is GP, general practitioner? If so, do you have a Rheumatologist? This is the first post I read from you and you don’t specifically say your disease but I am assuming lupus. I am glad that you finally got good sleep, I have been on ambien and amitriptyline but now I’m on temazepan, which works sometimes. I can take that my pain pills and a 300mg of Gabapentin and stay up all night and not fall asleep until 3 or 4 the next afternoon, it’s crazy. I wish you well and I will be following you and praying for you. I read a comment from I think Pat, telling you she would have ended her life a long time ago. She doesn’t have the strength you have and she will never understand we have fight in us that is unexplainable. I don’t know how we get through what we do without ending it but we do, we are built different. Take care Love.
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Hi Erica, I have a list of conditions but the top three in my book are PRMS, a rare from of Multiple Sclerosis, COPD and Fibro. Yes, GP does stand for General Practioner, but on top I also have Neuro, who I gave up on years ago, when he started sending me to see anyone who might help, in other words, he was at his limit of assistance. An issue all of us with totally incurable and untreatable conditions have. They sort of take the reverse dartboard approach, it’s me that gets thrown rather than than them, the darts. My Gabapentin has been raised and some of my pain has settled, but as always, other problems arise. You have somehow, entered my blog a few weeks behind.
As you said, we are a different breed, endurance is simply our lives, we’re still looking for the problems to start.
Take care 😀
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If it helps any, I am right there with you.
I too get drug tested every time I go to the clinic for care.
They just love to humiliate you I am convinced.
Before they will give you an RX for a “controlled substance” they ask you and assortment of questions ranging from “Have you ever been in prison” to “Do you have any traffic violations on your record”?
In the olden days, I would have simply got up and left!
This is a violation of my Constitutional rights but you’d never know. it!
The last time I was there, I was following-up to find out if yet another UTI I had was indeed gone. I was shown a bathroom and given a cup to piss in.
Before I went to collect my sample, I noted that the toilet was filthy as someone had been in there before I was and taken a huge dump and no one even bothered to check the toilet beforehand. Wow, what a disgusting thing to have to go through to get an RX refilled.
That RX is for morphine as well, a solitary 60 mg. pill once a day.
I’ve been on this same dose for over 10 years now and yes, I need more, a lot more, but I am afraid to ask for more, as I will be viewed as a drug seeker who is selling these pills.
Do the really think that someone going through this much hell to obtain an RX that they need to prevent one from ending up wheelchair bound, would actually sell these pills after going through so much hell to get them?
Answer: No, only if you are a complete idiot!
I really feel like telling them where to go so to speak, but I dare not.
Fed up? You better believe it!
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