Been ages since i wrote anything on here - not since the reamp so see if i can do it.
A month ago whilst on holiday - david managed to throw himself from the top step (only 4) on to concrete. His foot just didn't clear the tiniest of raised buts and down he went. Landed on his right good side splat. Didn't break anything but badly grazed all extremeties and landed onhis bad hip.
As i said nothing broken but all his already broken body shock itslf around.
Big dos and litle dos he didn't get better so a call to the wonderful pain clinic. Dr James saw us yesterday. yes i always go - mainly to support David but also cos Dr Jmes is such a pleasure to talk with. A fried.
He always calls me Pat - tha's nice cos it's my name! And if I behave i get a huge hug too. Worh going for that alone.
We discussed how long since david had his spinal injections and had heen seen he consultant about hus Burritis?
He;d had a sreroid injection a few weeks ago and spinal just before that so no more ags possible.
David just needed something to get on top o the extra pain where cocodamol ont work. Fr James presrcibed Etoricoxib for 10 days only. It is one of those drugs that can shred your tummy and david had been on similar years ago and had to stop.
So armed with another pill I had one happier bunny!tApart from the medical treatment David gets from our pain clinic they are friends. You become part of a family.
To all those who come to this site in pain, depressed or looking for advice - never give up. We don' have the answers. The pain clinic don't have the answers. But togther we can suport each other gaining knowledge.
So to dr James and his wonderful team - thank you again.
Pat x
PS This won't read back to me as the old site did so if this is rubbish - hope it makes you smile.
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Pain Clinics have given us all hope, people who understand, people who are passionate about reducing our daily pain. I am so glad that you have such a good relationship with yours.
I hope David gets back on top of his extra pain soon and things become easier, thank you for such a positive post.
Hope you understood my writing> I did manage to find the edit button after I'd written. Next time.
I do know how overworked and understaffer PCs are. GPs make to many referals when other courses should be examined first. This obviously takes up precious resources. In our case David has a life membership and this is so true on most on this forum. It is hard if you have to struggle on witha crap GP and meds that give little if any relief.
They told me once i could have a job with them - i said they couldn't afford me!
Mine had me almost wheelchair bound for 18 months, after Prolotherapy and left me permanently significantly worse!
As with any medical procedures, there are plenty that fail or make patients worse. That's not to say don't try, but always think long and hard about any medical treatment and the options and choices. Doctors have a long standing habit of having "favourite" methods of dealing with some things, and that doesn't mean it's necessarily the best all the time.
This thread is a very good illustration of just that sort of problem.... Etoricoxib is one of several in a group of drugs (coxibs) associated with extra cardiovascular risk, so that needs weighing up, and it is definitely not a drug to pop like an antacid! There are plenty of other less risky alternatives with similar action to try (some with much lower risks of more ordinary side effects too) - it's not approved for use in the USA at all as it's benefits are not seen to outweigh it's risks, in Europe it is seen in a better light than this, but still with restrictions on it's prescribing, especially where the patient has high blood pressure. mhra.gov.uk/Safetyinformati...
Hello Pat
BOB here
So sorry regards David, Pain Clinics can be a God Send and if they give support and understanding not just to a patient, also a family carer. You seem to have a good one where you live so you are very lucky you have this one..
You say David has been given a Cox 2 medication, they are a good drug and I have been on them for many years now.
This one must be one of their new ones Etoricoxib (Arcoxia), they work in a different manner.
Not good and had to stop. He was sick and felt worse so back to tried and tested increase in patches. Just 25m for 72 hrs. Slept his way through and bingo - on top of pain. Downside no driving and we are very rural. But he's heaps better and that's what matters.
We are the same now we live in the sticks and it can be problematic, good luck to both of you
BOB
Hello Pat
BOB here
I cannot take the ordinary NSIDs because they upset my bloods and I suffer with extensive bruising. Celebrex a Cox 2 is all I can take. My new doctor/ chemist has too order it in for me when required. as they are unusual in this day and age
Does anyone know how long this med takes to kick in> David only started 2 days ago but absolutely no effect yet. He is screaming with the pain and I have to move the cocodamol. for obvious reasons. I feel so helpless.
Having seen that, I would suggest that you talk to your GP to see if he can be prescribed something stronger. Co-codamol is not exactly powerful in effect anyway, and while the coxib should be having some effect by now, you always need to remember that the Codeine in Co-codamol does not work AT ALL in some people (it's a genetic thing, see martinfrost.ws/htmlfiles/no... ), then there are plenty of other opiates that would give some relief.
A very wise and experienced Dr once told me in my nursing days that when someone is quiet who suffers any acute or chronic illness or condition, that is when to take notice, people in true pain at the limit of their threshold cannot make a noise as their brain is totally consumed with the pain messages. Any noise in someone with pain is the result of the persons anger, frustration and helplessness. Think toddlers and tantrums.
General comment for everyone expanding on the comment "screaming in pain", not directed at David personally.
I hope David gets some relief soon. Maybe some relaxation/meditation/breathing might help to distract from the pain until the meds kick in. No harmful side effects in soothing the soul.
Bob here, You will be going through the mill with this. All I can suggest is give it till tomorrow pm and see how he goes, personally these medications are good and we all know the risks of NSID, These are not as bad as people put them down to.
Try his pain control, this may help, although if you are not happy, phone up doctor am and have David seen, there is no harm with that. You know where we are
Hi Pat, I saw my GP on Tuesday as the co codamol are not working, he gave me ibuprofen 400mg 3x a day. Told me to come back after I have spoken to my specialist who I saw this morning. The chemist told me that I can get a prescription for a higher dose of codeine than the 30mg, in a tablet on its own and then have a 500mg paracetamol on its own. I am going to look into that myself. Chemist also advised I start slowly with the ibuprofen and not take them 3x a day in the beginning. Feel like a juggler in the circus! keep well and good luck. My specialist was another story which I will post later. Ann xx
I would definitely contact your gp and ask for some advice it is cruel and unneeded that David remains in such acute pain. As for screaming in pain sometimes the only way I can misdirect the pain signals is to growl or grunt. I think if at that point I went quiet I would have probably passed out.
It is so frustrating not to be able to stop the pain, so tiring and so debilitating you have my empathy I also feel it is much worse for those watching me suffer than it is to suffer myself. I know my partner has been in tears feeling so useless and hopeless that he can not take the pain away from me, sometimes he can not even hug me for I can not take anymore input of physical feeling.
I really hope that your GP finds something that will work quickly and efficiently and give David a break my heart goes out to you both.
nutty
Arcoxia (Etoricoxib) never really worked for me,I have fibromyalgia, myofacial pain syndrome and athritis in my neck, they are mainly prescribed for osteoarthritis, ankylosing spondylitis and gout. I was only on 60mg, I was on them for quite a while along with pain relief medication and when I was taken off the pain relief medication and just kept on the Arcoxia I realised they weren't working. But I had in fact been on them for another reason a couple of years ago and they did work then. I have to say I was never fully happy taking them as I worried about side effects, but then all meds have side effects and we have to weigh up the pros and cons...I wish you and David well and hope he finds something that works for him, Mary x
I think all of us on here are hoping and praying for David (and you) to get some relief from this awful pain soon. I know how helpless you feel when there seems to be nothing you can do to help him.
Last December at the height of my back pain I couldn't get to the bathroom from the bedroom without screaming out in absolute pain "I need a painkilling injection", this was not anger or frustration, just the worst pain I had ever had (and I have had 3 children!) My poor husband panicked, rang the surgery but at 6.31pm they must have just switched the lines over and a voice said "999" my husband was so shocked, he said I don't need you, just a doctor! But a nurse asked to speak to me and then told me a doctor would ring back. When he did, 2 hours later, the worst of the pain had subsided - I just wish that could be said for your David.
As Bob says, hang in there, we all feel so sad for you both, but your cheerfulness in the face of such difficulties is a real tonic. We do hope for better news soon, meanwhile lots of love to you both,
To all my friends here both old and new - thank you for the support, advice and kind thoughts.
For those who don't know David broke his back serving in the Royal Navy, has ankylosing spondylitis, cervical spondylosis, burtritis? reactive depression, diabetes, CPOD? and me.
His pain cocktail consists of 75 squiggles morphine patches, topped up with 8 cocodamol A daily dose of amitriptyline, baclofen, and 8 other drugs i can't spell off hand. He is 64 ish and has been getting worse since the age of 36 when the accident happened.
He has spinal injections about 2/3 times a year with acupuncture every 6 weeks. He can barely walk, stand or sit and lies down to eat .He has a Mobility car which is his legs. Over many years he has attended pain goups, psychiatric meetings, physios, relaxation classes and i can't remember what else. Many have had some relief, many have not.I
And he is in pain every second of every day. A pain which i can not begin to imabine.
Not a lot different from so many who come to this forum.
Pain management is what it says on the tin. Learnig how to manage your pain. We often talk about how some thngs work for some and not others. The cocktail is there it' a matter of finding it. Chronic pain never stops. But it is possible to get to a tolerable level. Listen to your body. Don't expect to run marathons, clean the house or landscape the garden. You can't, Do a little and stop before the raw pain kicks in. This is pacing yourself.It is easier to maintain pain levels rather than trying to stop them.
But to everyone past, present and future, never give up on yourself. I'd never hive up on David and who would I nag?
This is my way of coping with his bad days. Thank you and smiles.
hi Pat I don't think I have spoken to you before, but I just read your story about David and my heart goes out to both of you, its so awful that David has been in such pain for so many years, I wondered has he ever been offered either a Lidocaine infusion or a Ketamine infusion I have had both, the Lidocaine worked the first time for about 6 weeks but when I had another one it didn't work at all so my pain Doctor offered me a Ketamine infusion which I had in July and it is the best ive been in 3 years im not totally out of pain but it is loads better and I can have top ups about 2/3 times a year, I have nerve damage on my spine which give me chronic pain in both of my legs, so im not sure if it would be something that could help David or not but thought it was worth mentioning in case its something that might help. either way I wish you both luck and hope David has had a better day today.
I didn't mean to sound doom and gloom. It was supposed to give hope and encouragement to those who feel there's no point to life. Yes David is having a bad time and yes they will get worse but he does have good days. We laugh like teenagers, cry like babies and that's just going to the council tip! Maybe this was a place for me to let out my feelings and tell others to do the same. Thank you vivikin. - you have helped. xx
Reading this I cannot feel anything but a high degree of concern. Everything is about discussing of pain medication. Pain is just not pain medication. It is about mental preparation. It is about what the body is doing. It is about inflamation control. It is about not making the issue worse by tensing into the pain. It is about ensuring that no muscle waste products are accumulting at the site of pain.
There are many papers on the issue of pain killers being addictive and requiring more pain killers to bring the pain down. If pain killers are addictive then the missing of a pain killer dose will cause the pain to increase because of the addiction effect.
There is also the effect of pain interfering with sleep and creating the issue that pain increases because the person with the pain has not attempted to catch up with the lost sleep doing the day.
Sometimes antibiotics are the best thing for pain.
Sorry to go and not fully answer the question you asked. When dealing with pain it is important to deal with the little things. Little things can be dealt with, big things cannot. We all have a stress breakdown point. When we have a health disibility the stress breakdown point can shift. Once stress is over the stress breakdown point everything starts to fall apart. It could well be that the minor fall David had pushed past his stress past his breakdown point and his pain coping mechanisms fell apart. Try working on reducing some of the little stresses he has. Are you good at massaging feet and hands?
I didn't say it was a little fall did I? Maybe only a few feet but it was splat on to solid concrete. Nothing broken admittedly but the broken bits inside his body rearranged themselves. Not good.
I am intrigued as to what you mean by dealing with the little things? And if U may ask - what is your experience of chronic pain?
What can happen from a fall is that muscles can go into spasm. The muscle spasm can lead to a great deal of pain. I have learnt from experience that to reduce pain I have to untense muscles. To untense a muscle that has gone into muscle spasm one needs to find a way to stretch it out. This is sometimes very impossible to do. There are healers who know how to un-spasm muscles. Laying on of the hands is one of the oldest medical treatments in existence. It is just unfortunate that the medical profession has been trying to destroy this treatment for years.
You ask “what is your experience of chronic pain?”
I got hit by a ten tonne bus which rammed my upper arm into my neck when I was on a push bike over 20 years ago. I live with the lack of proper sleep. I have learnt methods of helping my pain though T'ai Chi, Alexander Technique, McTimony Chiropractic on the NHS, Meditation and Mindfulness.
My experience of T'ai Chi, Alexander Technique, meditation and mindfulness go back 35 years. I have studied feedback mechanisms at HNC level. I have done bio-physics as part of my degree. I have studied errors of observation as part of my HNC and part of my degree. I also have A level biology.
You ask “I am intrigued as to what you mean by dealing with the little things?”
Google “stress performance curve”
When you have a health disability you are under a lot of stress from the disability. This would include social stress as well.
The Yerkes–Dodson law is an empirical relationship between arousal and performance, originally developed by psychologists Robert M. Yerkes and John Dillingham Dodson in 1908.[1] The law dictates that performance increases with physiological or mental arousal, but only up to a point. When levels of arousal become too high, performance decreases. The process is often illustrated graphically as a curvilinear, inverted U-shaped curve which increases and then decreases with higher levels of arousal.
If you go past your stress breakdown point everything starts to fall apart. Pain can go into overdrive. You cannot do anything about a large stress it is too big to tackle. By tackling little bit bits of stress that is within your control you can reduce your total by small amounts. The small reduction moves your stress away from your stress breakdown point which in turn helps with pain management.
I have learnt that lack of sleep increase the tension in my muscles and reduces the control I have on my muscles. So part of my stress reduction scheme is to sleep for an hour in the afternoon and maybe sleep in the early evening.
My understanding of this post was three fold. One was to gain advice on ways to reduce Davids pain after the fall, a short term spike in his pain levels which need to be dealt with on a short term basis. Two to find out information on the effectiveness of the drug prescribed. Three to give Pat some much needed moral support during this tough time.
Short term, during flare ups or extra pain strong pain killers often provide the answer, enabling the pain to be reduced and more long term methods to be implemented. However with a prognosis like Davids I think the least of his worries are being addicted to pain killers or the damage they do to longjevity. I personally would readily accept a prescription that although would shorten my life by several decades would give me a decade or two of pain free living. It is all about balancing quality of life with the side effects of the medications, well it is for me maybe for others it is different.
I know it is easy for me talk because I had a number of different techniqes at my finger tips before I enterred the regime of severe chronic pain. It was an osteopath's treatment which showed me that I could be pain free. I have a regime where I see a McTimony Chiropractor every six weeks on the NHS.
Being addicted to painkillers means that the painkiller can be the cause of the pain.
There is often no information on the effectiveness of a drug prescribed. A drug works differently in everyone. Only observation by the patient can determine if a drug is effective or not. Read "Bad Pharma" by Ben Goldacre.
"Short term, during flare ups or extra pain strong pain killers often provide the answer, enabling the pain to be reduced and more long term methods to be implemented."
This is a nice theory, but more often than not it can cause a lot of damage which in the long term leads to more problems. This sort of thing has been written up in research papers.
Pain is there for a reason. Pain leads to feedback loops which are very useful in the short term but can be problematic in the long term. The question needs to be what am I doing which is causing this pain. This is the crux of the Alexander Technique. I have been doing Alexander for a long time. I do understand that a lot of people do not want to spend money on complementary medicine and would rather trust what their GP says and take medications without question or research.
Wow lots of very long words" Thank you for explaining not only your condition but how you deal with your pain.
Yes pain killers hopefully remove some or all that pain but don't sure the reason for that pain. Many people have no idea why they suffer CP and often the cause can be found in a childhood accident. Unfortunately in some people it isn't always possible to cure the cause. What is the answer then>
I have listened to artcles, experts and other CP sufferers over many years. I don't have your qualifications - only the qualification of life. Sometimes this is purely and simply common sense!
Pacin yourself is a good self help method. Stopping doing something before the pain. Prevention is always easier than cure. Not digging the garden all in one day but over several weeks. These are tried and tested methods but human nature tells you you aren't hurting so just do a bit more. Or even more so - you want to do what you did before the accident.
David has a sleep most afternoons. Sometimes a short one others a longer one. Each pain management is different as we are all different.
At the moment we don't knw the reason for david's flair up but if we think hard enough the answer is there.
Sometimes if I have to go away he gets very anxious and that I know will make him tense. Will social works tur up? Will I cope? Tense muscles brings on flair ups. So answer? I don't go away!
Finally cost IS a huge part of CP sufferers lives. Many do not work and have to live on vey meagre benefits.
But that's another story. If you aren't lucky enough to get alternative treatment on the NHS you go without. That;s it. You can't get the treatment which would help you, your condition worsens and you start the spiral downhill into deep depression.
Hit another black hole yesterday when it was clear those tabs I can;t spell werent working. They made him violently sick, he couldn't eat anything (bad sign in man) and he was desperate.
Smashing GP came out and immediately took them away from him.
So back to the tried and tested extra patch. just 12 and a half which should kick in tonight. 72 hrs should be enough but no driving, flying planes o combining the fields!
Of course when you aren't allowed t drive what's the first thing you want to do? Yup go shopping.
I shall sit on him for the next 3 days, hold his hand and not let him do a thing. That's my prescription.
You are very fortunate in many ways, you have a good knowledge of your pain management and you have a diagnosis that medical professionals can work with. Pain is not always there for a reason, I have crps to the left hand side of my body, there is no known reason for the pain it causes only theories. There is no cure only procedures that have worked in some cases. I have researched and tried every remedy, physical, chemical and psychological I have invested my fast dwindling savings in specialist physios and seen the countries top specialists in the field. I have to now accept that there may never be a reason, may never be a cure but the options I have of lessening the torture of chronic pain I will take with both hands pc or not.
There are two types of proffessionals in pain management. A medical proffessional who will diagnose and is not able to do much else. A healer the rare individual who may not have the degrees a medical proffessional has, but what they do works.
Physios I have found from experience a waste of time. Alexander Teachers who also are healers are very effective. Mindfulness is a technique which will not cure a problem, but it does give you the tools to observe. Pain control starts with observation. Mindfulness is a Buddhist technique and because it is part of a spiritual discipline often costs very little to be taught by buddhist monks or local buddhist groups who practice the technique.
Meditation practice is also another practice that is taught by Buddhist Monks or Buddhist groups for very little cost.
Both MIndfulness and Meditation are worth investing your time in. The buddhist society
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