MS and Fibromyalgia live with server chronic pain
My gp will not up my pain meds even though it... - Pain Concern
My gp will not up my pain meds even though it really helps me don’t know what to do.
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Sparky25
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39 Replies
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Do you have a pain management doctor or clinic?
No because I use to but they handed my back over to my gp to manage me and all the doctors keeps telling me is that the malphine isn’t helping me but it dose it helps me live a much more normal life than without it dose...
I don’t know what to do...
Ask to be referred to pain team again and someone else and they can override your gp on what to give you for pain relief
Thank you because they just don’t want to listen the more you ask for more they just put u down as being addicted to the meds
But I know that to much isn’t good but when you find the balance that dose work for you and then they remove it you feel back down to where you started at the bottom of hopelessness No Good for yourself or for your family...
For me this has been going on for a whole year of struggling once again and what it ends up making you do is self medicate just to get me through
The really worst days which all I’m
Asking my GP to do is give me some quick releases pain med that I can use as and when those really hard days are there.... AND ITS A NO ALL THE TIME...😭
I totally get it , I’m bed bound because of my pain and while it wa me getting worse and I couldn’t do day to day stuff anymore my gp wouldn’t give me anything else so I went through my pain doctor and he told my gp to prescribe the stuff I wanted as that was what I needed
By malphine do you mean morphine?
ncbi.nlm.nih.gov/pubmed/857...
Opioid-induced muscle activity: implications for managing chronic pain.
mayoclinic.org/healthy-life...
Opioid medications can make it more difficult to exercise safely. Learn how to stay safe if you are active while taking opioids.
Pain killers with MS can make the MS worse. This is anecdotal.
mstrust.org.uk/a-z/pain is a useful website
Fibromyalgia can treated by stretching and movement regimes. See a sports therapist concerning this.
Can I just ask no matter what is wrong with someone you suggest a sports therapist ?
Many people have problems with muscle control. Muscle control has a lot of influence on pain, discomfort and sleep.
Muscle control is helped by developing skills in understanding how the body works in movement. Also muscles when they get over contracted need the skill of someone with their hands to help to lengthen out the muscle. When fascia layers get stuck you need the help of someone to unstick the layers. Sports therapists often know about these issues and can often do something about these issues.
Dealing with these issues may not cure the diagnosis someone has. What it does do is lessen the stress on the body's engineering system. This reduction of stress may reduce the stress below the systems stress breakdown point and as such the system functions better albeit with difficulty.
see healthunlocked.com/painconc...
One of the things I have studied is instrumentation and control. This was an interesting course which looked at feedback mechanisms. I have yet to meet a medical person who has studied feedback mechanisms in their medical education.
See
healthunlocked.com/painconc...
healthunlocked.com/painconc...
for the issues of problems of research
I’m just telling you not every single persons problem on here will be helped with a “sports therapist” and sometimes it can make peoples problems worse. It’s free at you’ve done research but you don’t know everyone’s conditions and I’m guessing your not medical yourself
You or I do not know if that answer is correct or not. The value a sports therapist can give depends on their skill and how good they are with their hands. The variables of skill and sensitive hands will vary from person to person. Thus it comes down to investigating for yourself.
People have to investigate their own conditions and develop what methods they can to reduce the stresses that reduce quality of life. Medical is limited and always has been. We cannot do without the medical. We also need what the complementary can offer. The complementary often requests that patients do some work for themselves. The medical often just hands out pills. And sometimes the pills handed out will kill or injure you. There is plenty of evidence for this recorded on the internet.
I know from experience that some treatments for some conditions will hurt. Another words you make yourself worse before you get better. Fixing the aftereffects of a broken wrist meant having to stretch over contracted muscle, stuck fascia and nerves which did not slide in fascia very well. The treatment regime was painful.
Investigate and experience for yourself what the complementary can do. You need to network with people in your local area to get appropriate recommendations. If you engage in this you will find that you will gain skills to improve your quality of life. It is not easy and it will not happen at once.
I am neing treated for the right things by the right people this is just life and sports therapists really are not the be all and end all off healers I just don’t think you should push it on everyone no matter what is wrong with them and a huge whole page of information as I know for me I cannot sit there and read it. Thank you for though
Not being funny but when you have had instrumentation placed into your spine that may stabilise your spine but only makes your pain suffering worse no sports therapy cuts the mustard . Many years ago before my surgery I did used to visit a clinic in Compton Wolverhampton is name was Neil Jones he was a sports therapist worked on pro footballers . He used a machine that heated up the bone it worked deep inside the body but without heating up your skin . Neil always likened it to a microwave without the cooking part this was a wonderful feeling and did help so much . Now I'm rather full of titanium I cannot have this treatment which is a shame . When you have instrumentation your options for finding pain relief is very limited when you have chronic spinal problems your treatments are very limited believe me I have been on both sides . Before my surgery I tried everyone every alternative therapy going most therapist were too afraid to touch me some tried but only made me worse . I suppose what I'm getting at is one solution does not fit all yes your outlook may help some but not all and you cannot with any honesty think or say that .
There is no one solution. There is only investigation. You are very reliant on the skill of the people you see. The skill of the people you see is a very variable quantity.
I look on the issue is that any reduction in stress however small can make a lot of difference to potential quality of life.
Some people are able to do the research to investigate and develop things that help. Quite a number of people expect a cure and are unable to accept nothing less than that. For them things that are helpful pass them by.
I have hundreds of hours of research behind me. This can be a problem sometimes in that I forget what it was like when I first started my research. I know how badly some physiotherapy treatment is from first hand experience. I have met very good complementary therapists and I have met bad complementary therapists.
Yes I do agree with you that there are good and bad therapist's out there . I cannot say that I experienced any bad therapist's or bad treatments but what I do know is that alternative therapy just like medication is not a magic cure even if you are open minded about such treatments . You paint a very dim picture of people in chronic pain almost saying that they are not doing enough not researching or not accepting enough of alternative therapy . My own surgery was carried out on my spine not as you say searching for a cure from the pain I was suffering but it had become a necessary procedure as I was at risk of paralyses a reduction in pain would have been nice but the main reason was for stabilisation . I have been treated by many people before and after surgery at different hospitals and clinics .i have always been open minded about different treatments including physio and the whole gamut of alternative treatments including yoga Pilates but believe me when your body is in so much pain thinking yourself well just does not do it and manipulation can be down right dangerous . When you are in real chronic pain serious pain it would be like asking someone too thread a needle with fine cotton whilst someone was hitting you on the head with a hammer that's how useful alternatives are or physio when you are suffering chronic pain . It's nothing to do with people expecting a cure it's all to do with pain so severe you want to scream out you cannot blame people for sometimes clutching at straws hoping something works . The fact that you have hundreds of hours of research behind you is irrelevant I have been in the presence of people with years of experience and research behind them at the very top of their profession . These very same people have also been honest enough too admit that they cannot help pre and post surgery . It may help someone with less severe problems but for chronic pain sufferers I don't think so that is just wishful thinking .you could go really really silly and try reiki but then you would get more from the heat of burning ten pound notes than you would from reiki . I do find some of the things you say about chronic pain sufferers quite insulting maybe if you had been through an invasive op and you knew how it feels you may have a little more empathy with chronic pain sufferers
Thank you for the reply. I know about chronic pain at the very high end. I also know about breathing that modifies pain at the high end. I also know about various thinking strategies to do with pain. Some of what I know about handling pain does not exist in the medical professionals training.
Reiki has its equivalent in spiritual healing which has existed in Europe for hundreds of years. It is understood by those who have an innate knowledge of it. It is dismissed by many who are totally blind and deaf to it. It has its place for some people. I have played around with such energies and I know from experience that some people are sensitive to them and some people are not. I have never used such energies for healing purposes. I use other skills.
You say: "I have been in the presence of people with years of experience and research behind them at the very top of their profession . These very same people have also been honest enough too admit that they cannot help pre and post surgery ." These people are often limited in what they can do and in a number of cases have left a mess behind them. They are untouchable in what they do. Many failed procedures have been covered up. Although it is more difficult to do that as easily these days. And some of these failed procedures are no being described in regard to the damage they have done.
I can only have empathy and understanding for things within my experience. So there are many who cannot understand that there are things available outside the narrow speciality and understanding of the medical professionals. I know from experience that most of the medical professionals I have met know nothing about feedback mechanisms.
Hi, I'm very sorry to jump into your conversation but I've just read your reply and what you have had done in your spine is what my spinal surgeon last week told me he wants to do in the next few weeks. He's said he's doing a spinal fusion, with nuts, bolts and some sort of cage that I thought came out after surgery but he's said the cage stays in forever, so that my bones grow round it ( not got a clue what he means as I came home and then thought of all the questions I should and wanted to ask. . I'm very very scared of having this done as he's said it's 12/14 hours on the operation table and I will have cathatar and stoma bag fitted that hopefully will be removed after a couple of weeks. Please can you tell me what to expect and what the pain will be like and if its worth going t through with the op. Sorry again for jumping into your conversation. Kind regards xx
Good morning to you are you sure you are ready for the answer to your question
in reply to johnsmith
I have long-standing, severe nerve damage, and have been sent on many physiotherapy courses over the years. It has done nothing at all for me, except prolonged my suffering! I'm now on quite a concoction of painkillers, including opiates, and I'm now at the stage where they they have accepted that the increasing pain is not only affecting me physically (I can hardly walk at all, and have almost doubled my weight!!), but I'm also struggling mentally! I'm having an MRI on 7th June, where I hope it will uncover something which can be 'fixed'? 🙏
johnsmith in reply to
Physiotherapy can be very bad on occasion. Many physiotherapists know how the body works from a mechanical theory viewpoint, but fail to appreciate how the body works as a multitude of engineering systems which interact with each other. I personally have had to correct physiotherapy exercises given to patients.
Lot of physiotherapists talk about strengthening exercises. They never talk about uncontracting muscles which have over contracted.
Useless comment. Your better off saying nothing rather than putting folk in danger by saying not taking medication is better before exercise. I cannot do any without my medication. Your foolish to post this. Leave as I believe you are not in pain like genuine sufferers.
I would recommend you give serrapeptase a try. It is a potent anti inflammatory and may help. Investigate and give it a try, you won’t regret it.
to the comment of see a sports therapist.this is lunitic speak.if as like myself have pain in your body and bones so severe that getting out of bed is agony.being in bed is agony.going to a sports therapist is an impossibility.i broke my back and uppupercollar bone will i hop down for a bit of sports treatment.fool.i guess your a gp john
I know therapists who do home visits. I have the advantage that I know at first hand what sensitive hand work by a professional therapist is. This type of treatment is outside the experience of many people until they experience it.
The term sports therapist means different things to different people. This is always the problem with language.
Here are two British Medical journal videos on youtube on Alexander Technique trial.
youtube.com/watch?v=3GbwzqT...
youtube.com/watch?v=BXmimtk...
When you are looking for a cure then often there is disappointment. If you are looking for ways to improve your condition then there are lots of things available from the complementary. And you have to start the investigations somewhere.
Where we go with the sports therapist again .
Got a sore throat “sports therapist”
Leg hanging off “sports therapist”
I mean come on not every person who posts on here would benefit from one
Do you sit and wait and copy and waste
I am familiar with the straw man argument.
en.wikipedia.org/wiki/Straw...
Sorry but I’m not reading your links just please stop writing the same thing on everyone’s post whatever is wrong with them . I actually talked to my doctor today and he said absolutely to never go to one it would make me so much worse do some damage
Checked the links. They work. So I presume you mean you are not going to look at the evidence I present.
If you have a complaint speak to an administrator.
I know why I make the comments I do and I have good reasons for doing so. I often talk about investigating. You want to comment about me being wrong and yet are not prepared to investigate to try and determine what I am trying to get at.
I use the word trying because language is limited and is understood within peer groups and can have very different meaning outside a peer group.
I just don’t trust someone who says the same thing to everyone no matter what they have wrong with them it’s not one thing fixes all also you’ve never made your own post , obviously not your own name and why do you keep going on about language we can all speak English pretty much on this site and if we can’t we can google translate. Are you a sports therapist or something and think you can cure everyone’s different symptoms? I just feel a 🚩 with you I’m not sure why sorry , to many things don’t add up
You do not pay attention to what I write. You confuse cure and "help to reduce problems". You confuse investigate to see if it helps. You appear to think that what I suggest is a cure for a problem. My viewpoint is that often it is not, however there are often problems that arise when body structures do not move freely. Body structures not moving freely is very common in pain issues.
You say: "it’s not one thing fixes all" At least we have one thing we agree on. If you have looked at my writings you will see that is my stance in many instances. A good therapist will vary their hands on treatment according to the patient. And no two patients are the same in symptoms presented.
You say: "also you’ve never made your own post". I do not know what you mean here.
You say: "to many things don’t add up". This is the nature of reality. A lot of things are engineering compromises. A slight change in a variable can cause a massive change in the final result.
Chaos theory is a branch of mathematics focusing on the behavior of dynamical systems that are highly sensitive to initial conditions. ... In other words, the deterministic nature of these systems does not make them predictable. This behavior is known as deterministic chaos, or simply chaos.
en.wikipedia.org/wiki/Chaos...
I am not a sports therapist. I do the occasional hands on work and movement instruction work. I know from experience that I cannot give written or verbal instruction as to what I do. I can describe what I do to another hands on therapist and be understood.
To know what to do you need touch, feel and sight. Non of which exists on a forum. A sports therapist can touch, feel and see. So they are in a position to do something in regard to getting a body structure moving. This is not a cure. It just helps to improve things. Pain is a whole body experience. Everything affects everything else. By reducing stresses the nature of pain experienced is changed.
By working at changing things quality of life can be improved. Improvement does not mean cure. Different types of therapist work on different types of engineering system improvement. It is a matter of guesswork as to what is the appropriate therapist at any one time. The guess depends on the skill of the therapist whether it is right or not.
You say: "why do you keep going on about language we can all speak English pretty much on this site". Language is limited to what can be pointed at. When dealing about things that cannot be pointed at there is a lot of room for misunderstandings. I can point at a carpet and say it is a red carpet. You can point at the same carpet and say that it is a grey carpet. We can agree that my red is your grey. We can do this because we can point at something. You cannot do this for body states.
I can see where you're coming from John.
My Dr prescribed me OxyContin for my back years ago, I didn't know what it was at the time & I'd never even heard of opiates.
I'd had injections in my spine & 5 discs, nerves burned etc etc numerous times, the last one in January, none of which have worked.
The OxyContin did actually help & gave me some quality of life back, (in the beginning). That is until it stopped working, my Dr upped the dose which worked, then again stopped working. The prescribed dosage kept on increasing till I was prescribed 800 mgs per day over the months, for many months. Yet again this amount stopped working. Towards the end, I was on 1500 mgs per day, that did nothing for the pain, it actually made it worse in my case!
I wasn't taking it for the pain at this time, I was taking it to actually function! I became an addict, but a legal one!
I was a successful senior manager paying 40% tax, own home, brand new Lexus, I lost it all due to the same drug that has now killed over 400,000 people in the U.S & counting daily!
When I approached that same Dr to tell her I had a problem, her reply was: "I've been told off by the other Dr's here due to the amount you're on & they're suprised you're still around! We now only give this drug to terminally ill cancer patients as it won't matter WHEN, they get addicted"
This is where the problem is as it's a fine line. People with chronic pain will do absolutely anything to take that pain away, I did, but then I trusted my Dr.
The amount of times I went into withdrawals & toxic shock though, were the worst experiences I've ever had in my whole life, even much worse than the chronic pain I was in. I should have and very nearly did die from this drug.
The problem is long term damage, even though I have been off that drug now 3 years. I was turned away from 3 drug agencies as they wouldn't help me to come off it. All of them saying: "It isn't Heroin so we can't help you" even though I told them that it's synthetic heroin, it's actually stronger, they didn't want to know.
I think dr's are now frightened to prescribe opioids at all now, even if they have now been proven to help short term pain management only.
Even though I beat my addiction, the effects of it are now, after 3 years of nothing:
Macrocytic Anemia.
B12 deficiency, (which most Heroin addicts have without realising)
Folate deficiency.
Pernicious Anemia. Of which i need injections for life.
I had a testosterone level of almost zero, hormone Injections thickened my now dodgy blood.
Severe Central sleep apnoea where I'd stop breathing 80 times per hour, as opiates restrict breathing!
Now got Peripheral neuropathy due to nerve damage from B12D going undiagnosed.
I beat OxyContin, but it left me with long term damage.
I refuse to take any medication now & am going on a course through the pain clinic over ten weeks on how to not cure my condition, but to show me ways of managing it.
I know everyone is different & some have a very horrible condition where this course may not help them, but I'm going to give it a go, as I will try anything to help with managing the pain, anything that is, apart from opiates, been there done that, nearly killed me & lost everything.
Thank you for your reply. I feel a little out of my depth as you have been through things that are outside my experience and hence my understanding. There are things that can be tried. I gather you are in the States which is very different than the UK.
cittaviveka.org/index.php/t...
Mediation: A Way of Awakening by Ajahn Sucitto is a free download.
There are other books as well on this site that may be helpful.
I know about loss of career and ability. However I am in the UK so things are not as problematic as in the States.
cittaviveka.org/index.php/a...
The thing about monks is that they have nothing that they own they have no money and they have this capacity to be happy. I found their teachings helpful and I found the meditation practice helpful.
At the pain clinic you are going to attend they may speak about meditation and mindfulness from a secular viewpoint. Whereas I look at meditation and mindfulness from a Buddhist viewpoint. The two are not exactly the same. There should hopefully be Buddhist groups in your vicinity. I can practise meditation in a group easily and I find it very difficult to practise it on my own.
Fascia: What it is and Why it Matters By David Lesondak. You may find helpful. I bought my copy on Amazon.
Fascia has thousands of nerve endings which feed into the brain. Fascia is what determines our emotions and it has an influence on pain.
The first international conference on Fascia was at Harvard Medical School in 2007. This is too new for many in the medical profession who got their qualifications more than 10 years ago.
Hope I have been able to be helpful in moving forward.
Thank you for that John.
I think you'll be very surprised to know that I am in the UK. If I was in the States I would've probably got the help, though they are still learning.
This is why the agencies turned me away due to the very poor policies in this country around helping people addicted to prescription medications. Surprising really as the amount of opioid based prescriptions has risen massively in the last few years in UK. Still, 3 years on, you will struggle to find an agency to help.
As I said, everyone is different but, from my own personal experience, I am now in a much better place than I was mentally, even though the pain remains, but I am managing it, maybe due to how I feel mentally now??
The thing about strong opiates is they mess you up big time long term. My brain stopped producing endorphins as it was getting them from the drugs, this has now only recently returned, despite 3 years of no drugs. Receptors become damaged & stop working etc. Some things however are still not there but, signs are there that they're slowly returning, motivation, interests etc.
The depression, anxiety, feeling suicidal etc, have all now gone, I still have the odd bad day where I feel down but so does everyone.
I know now that my body is repairing albeit slowly from the years of heavy opiate use, and it takes time.
I have learnt a lot, but only from my experience.
Thank you for the book references. The one thing I did do was to read loads of books around opiates & what they do to your body.
The pain clinic course is around mindfulness, breathing & other techniques etc & as I said, it's not for everyone, but I'm now in a place where I'm hoping it will help me.
I'm still not working, but I'm in training to be an addiction councelor to hopefully help others when there wasn't the help I needed.
Ok thanks
Ok so why are you now talking about chaos theory?
You literally don’t make any sense to me. No you obviously don’t have the cure but telling every single person no matter the problem to go see a sports therapist is not ok! I actually asked my consultant (while I’m stuck in hospital) about this and he laughed saying maybe they might help people who have injured themselves in some way but anything else would be very problematic and they don’t have half the training other people in that generalised field do. So please can you stop telling everything that this is what they should do or go and see
Go and see a sports therapist. That is the only way for you to understand what I have been talking about.
Make a few enquiries about your consultant. For how long has they seen patients after their treatments?
I have said as much as I can. You are not going to understand from reading.
I hear and I forget. I see and I remember. I do and I understand.
I may not make sense to you. That is the nature of reality. There are people who have the experience to know I do make a little sense. That is the way things are.
Thank you for such a good laugh. You absolutely made my day....leg hanging off-sports therapists...too funny.
Honestly he drives me insane lol glad I made you laugh though 😊 x
govto your gp or another one.remind rhem that they have a duty of care including your pain management.if they refuse write to the top person in the surgery.let them know you will persue it durther till they get your mefs cxorrec and you are painfree and able to do basic things to improve the quality of your life.dont take no for an answer.good luck
Make another appointment to see your GP and refuse to leave his consulting room unless he ups your meds. Direct action works every time.
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