LONG

[travie1973]

there are far too many people like myself who have suffered from chronic pain for years, have built up a tolerance against our pain meds and doctors are too scared to prescribe doses big enough! CAN'T WE SIGHN A WAIVER AND GET THE DOSE WE NEED BEFORE SOME OF US TURN TO SUICIDE?!!!??

[superannie]

Hi for the first time in over two years I have arrived at precisely that stage. Meds not nearly a effective and am in constant pain. I am waiting for a referral to a pain clinic and am praying they will be able to help. I am starting to increase the dose a little at a time now. What else can I do? Suffer? I agree sign a waiver, stay alive! Ann

[travie1973 in reply to superannie]

they will not prescribe nearly the dosage I need for my pain. thanks to some addicts abusing the drugs, and their naïve families suing them when they od. SAD

[Calceolaria]

The opioids have to be considered in some cases, I believe. There are loads of pieces of research on this.

[Hidden]

I think it is very dangerous to go above researched safe limits, or even beyond your own comfortable low side effect dose. There are over 300 pain meds in all, and many procedures (injections/implants etc).

There is a condition called opiate induced hyperalgesia. This is when the dose is high enough to cause pain, rather than mask it. Don't be devastated, there are other drugs and I'm still looking for them too! I was devastated when told I had it (wrongly as it turned out) by a pain consultant. Do see someone with expertise (a pain consultant, but not that one, obvioiusly). Does anyone know any more about this? I asked this consultant for research to back up his claims, and he could only give me stuff NOT relevant to chronic pain.

[Hidden]

PS I did once suffer from all my opiate receptors being saturated (not hyperalgesia) by increased dose after surgery. I felt very ill, for several months: itching, sweating, fluey, unable to eat at all after 2 pm, sitting listless around the house all day. I lost a lot of weight very fast and not a good way to lose it.

[dogbreeder]

I feel for you, I had decided to stop commenting on here because I had some rather odd remarks,hurtful remarks. I tell it how it is !! and so should all off us that suffer as we do.

However when I read your post I found myself here again, as I two like many others have got to that point where even the very strongest of medications are not allowing even a semi-normal exsistance. My advise if I am allowed to comment, is that you ask if you can do a trial period on a higher dose ie for a four week period and report back the results, that way the GP or Consultant has control but your in the driving seat.

It worked for me althought I should of asked for slightly more but it worked and Is I would say its worth giving a go. Good luck

[superannie in reply to dogbreeder]

thanks for your input, given me a lot to think on.xx

[sharelle]

Hi Travie, What meds are you on, what doses and what conditions? I've had pain for 24 years and have tried everything. Sometimes you need to make sure you are on the right meds for the right type of pain. Also regarding morphine, I was on a low dose and got hyperalgesia (felt like I had done 10 hours in the gym).

[travie1973 in reply to sharelle]

been on a long list. the best relief I've ever had was 30mg oxycodone 5xday. that pain clinic shut down. all the clinics now (3 so far) will not prescribe nearly enough. am tapering off methadone now, did nothing, I go in to doc on 10th to try something new.

[sharelle in reply to travie1973]

Is it muscle, bone or nerve pain or all three? Different meds work better on different things: eg tendon pain responds to codeine and paracetamol; nerve pain responds to codeine, neuropathic drugs, TENS macine; muscle pain responds to NSAID's etc.

[travie1973 in reply to sharelle]

nerve pain. I've tried it all. I hope to get back on oxycodone-the only thing that works, even though it gave me sleep apnea after a year of use. I now need to sleep with a c.p.a.p. machine. oh well the damage is done. and I feel like I'm dying w/o my oxycodone.

[johnsmith]

Is it time to look at what causes increases in pain. What is pain and what is the purpose of pain. Do painkillers cause the things that cause pain to increase in the long run?

GP's talk about pain. Pain Clinics talk about pain. Who actually looks at muscle spasms which can increase pain or maybe the actual cause of the pain in the first place.

Complementary medicine has a history of reducing pain which conventional medicine cannot help with. Many complementary therapists work by feeling what the body is doing. They know how muscles should behave. You can only know this by working with muscle. GP's do not work with muscle. Orthopeadics do not work with muscle they offload this to physiotherapist who give instruction but virtually no hands on guidance of how to use muscle effectively. Similarly Rheumatologists pass their patients to physiotherapists.

I do not take painkillers. I have taken Erythromycin on occassion for pain. This has worked for me extremely well. Erythromycin is an antibiotic.

I have a McTimony chiropractor who I see about every six weeks. This helps me with my chronic pain. Without the chiropractor I would be in agony. The McTimony Chiropractic I get on the NHS.

The Chiropractor also stretches out my leg muscles because they have a tendency to get too tight.

I have treatment from an Alexander Teacher. I have 35 years experience of Alexander Technique. There is a lot of evidence about how the Alexander Technique helps.

NICE does not engage with individual therapies. So Alexander Technique and Chiropractic is not going to be on the NICE treatment regime.

I also engage in Buddhist Mindfulness. This I have been doing for about 40 years.

Painkillers can be additive. How reliable is what the GP's tell you about the painkillers you are taking. There is a lot of research which suggests that what is often portrayed to the NHS by the drug companies may not be quite true. (See "Cracked" by James Davies and "Bad Pharma" by Ben Goldacre).

I have lived with pain since a road traffic accident in 1991. I have learnt not to be emotionally atached to the pain as result of teachings by Buddhist Monks who practice Mindfulness and meditation 24/7. Non attacvhment to pain makes a lot of difference to how the pain emotionally effects you. Pain is an exhausting condition. It requires I sleep a lot. Lack of enough sleep will up pain levels because I find lack of sleep interferes with my ability to control the functioning of my muscles.

I hope this helps. There are other methods of pain control out there that does not rely on painkillers.

[talgarth]

In a couple of hours I may attempt to try and sleep. What I do know after 15 years of living with pain, is on waking, probably after 2/3 hours, I will be experiencing pain to the level where I need to convince myself the day ahead is worth surviving - a reason to live! For the sake of my spouse? for the sake of my grandchildren? If it were solely my own self preservation to consider I would not be writing this now. I have a GP who has no inclination of chronic pain - A pain consultant who will administer fji's in the knowledge they will 90% of the time be futile - An understanding Physchotherapist whilst not knowing the 'physicality' of my specific pain has an awareness of how it affects me! Where to go from here? What I am now aware of is how much harder each day becomes, how much harder it is to want to survive. The dominant problem I know is related to having a spinal fusion frame (partially fused) that on resting causes spinal nerves to be trapped/twisted/distorted and result in my waking because of it. I am all to aware that a body cannot survive with such little rest - perhaps I'll finally die of tiredness, that would be a travesty of the truth, I will depart this life as a result of unrelenting pain, maybe tomorrow, maybe next week, but I certainly cannot think ahead in terms of months let alone years. Even more morphine is not the answer, been there, got the t-shirt, something much more radical is required. A glimmer of hope lies in a forthcoming consultation with a different neuro surgeon next week - if I can survive till then of course! Good luck to you all against your demons.

[Calceolaria in reply to talgarth]

Talgarth, good morning. Your honest appraisal of your situation will have struck many a chord with people on here. I try hard to stop my thoughts drifting to the future, the day in day out grind of living with a hated constant companion. What I do recognise is that I have a lot of 'head work' to do, the kind of things Johnsmiths writes about, as in this thread even. Try this wonderful book, which I have only just started - Living Well With Pain and Illness by Vidyamala Burch, a New Zealander who was horribly smashed up in a RTA. She is active in pain research and management and works with UCL. I'm guessing her first name was changed as she employs many Buddhist thinking techniques and is probably Buddhist now. Living a life of less resistance to pain and in fact going out to meet it - that is where I think I can find a way forward for me but I have a way to go as I am still denying, still rejecting my new life. Good luck with new doc. And please let us know how you got on.

[superannie in reply to talgarth]

I have no idea how to say that I found all you said very interesting. I am right up there with you. At the end of the day, s--t happens! we can only keep trying to find some bloody relief for this pain. hang in there, I am trying my best too, just for myself. Ann xxx

[husky2]

As long as you take your pain meds as prescribed you should not have a problem with addiction but at the same token if the painkillers stop working you might of build a tolerance and need more to control the pain. Some pain is so debilitating that the narcotics just stop working. So how can you manage the pain?

[Hidden]

Sports physios - I'd be lost without mine. Currently have an injury equivelent to an 80 mile an hour crash and not using meds for precisely the reason that in a few years I will be on a high dose and can't get any more.

I've met so many talented and attentive alternative therapists. They have a vast ocean of knowledge to draw upon. They are the ones that gently encourage by listening, suggesting, on a couple of occasions intros with other sufferers. They get to know your body and its wiley ways very intimately and can tell just by looking at you what needs doing.

Acceptance goes a long way to work with the pain rather than against it. I get about 4 hours sleep through a broken night. When I'm awake, I meditate. My body is resting and my brain is taken somewhere else the pain fades into the background and I work very hard to keep it there.

I'm sore if I do and sore if I don't so I'm planning more dos and accepting that more pain will result, letting it happen and sorting it when it does. It is only pain. Pain never stopped an athlete from running a race, so why should it stop me from living my life?