am feeling fed up. I have suffered chronic back pain most of my adult life, in the dorsal region. Repeated trips to the doc when I was younger were a waste of time as I left the surgery time and again with leaflets about how to do back exercises.
I went to live in Canada for a few years and within 6 months of living there, the doc agreed such pain in a 30 something woman wasn't normal, he looked at my spine and could see something wasn't right (I have a curvature), Sent me to get Xrayed and blood tested and within 48 hours I was diagnosed with osteoarthritis and Scheurmann's disease plus a curvature of the spine at dorsal level.
Came back to the UK armed with my medical documents and saw my doctor.
Sent to physio where a morbidly obese nurse told me I needed to do more exercise (I had already told her I had 15 dogs, kept pigs, goats poultry, grew my own fruit and veg, and at 7 stone,I was hardly overweight and was strong). I am afraid my pain makes me grumpy and I simply said "you need to take a dose of your own medicine" and left the room.
I currently take 70mg dihydrocodeine every 4 hours (sometimes 3 hours if I'm in real agony) and then 60mg Tramadol late at night so I get 6 or 7 pain free hours and can sleep. However after 20 odd years on this, I am now in almost constant pain. As a result I am doing less and less, had to get rid of all the livestock, spend most of the day sitting with the T.E.N.S. machine on, and getting grumpy, bad tempered and putting on weight.
I have tried speaking to the doctor and all he does is offer me antidepressants, presumably so as to make me feel happy about being in pain. I'm fed up with hurting NOT clinically depressed!
I will be 60 in March but frankly feel like my useful life is over . No I'm not depressed. I'm normally the most cheerful person you can meet and a barrel of laughs. I'll have you splitting your sides. But I am SICK of my land being left to weeds and nettles because I hurt too much to actually do anything.
Is this it for me? Will I spend whatever time I have left on this earth unable to actually live my life and constantly be in pain, planning afternoons out around painkiller doses, timing it so I am lucid and safe to drive, and also figuring out where there are places to sit (Sorry I will NOT use a wheelchair. Was in one 10 years ago and it's just not me if I can avoid it), or avoiding going out at all.
I have been given Pethedine before now and it's horrible. Still feel the pain but spend my days asleep. Oromorph does the same. The only time I feel normal-ish is when my lungs go on strike and I have to take steroids. Amazingly there is also no pain.
So, what would you do? Is anyone or has anyone else been in this situation? What painkiller should I ask the doc for given that what I am now taking is really not effective for most of the time (I get some relief about 20 minutes after I take the dose, for about an hour, before the pain starts to build again).
I realise I'm not a young woman and have used my small frame remorselessly in my youth, carrying heavy (25kg) sacks of feed, bales of hay and straw, buckets of water, shoving horses about etc, but surely there must be some kind of effective pain control which isn't going to make me sleep (I might as well just have myself put to sleep) and whereby I can have some sort of life? If I thought that taking steroids permanently was the answer I'd do it.
I'd really love another driving pony, to keep the weeds in the paddock down, be able to go out and about the lanes locally with some of the dogs, but as things are, I'd be exhausted and hurting after tacking up and then have to go and lay down for an hour. A trip to the supermarket, then unloading the shopping renders me fit for nothing for the next 48 hours. I may be alive, but I'm not as alive as I'd like to be.
Excuse the long diatribe, sometimes just ranting helps.
How is it in the 21st century, with cures for all kinds of diseases, and all manner of wonder things which can be done to replace body parts, even get paraplegic people walking, how come there is no sure fire effecting means of stopping pain??????
If this internet thingy stays around, in 200 years time will people read this and gasp in horror at how primitive we must have been that we still had wasted human lives because of chronic pain?
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Grey-Witch
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I'm only a couple of years younger than you, but in a fairly similar situation, although my non-NHS diagnosis (not accepted by the NHS) is ankylosing spondylitis. If your GP isn't helping, or has run out of options, definitely ask for a referral to a pain specialist. They do have a lot more things up their sleeve, including steroid+anaesthetic injections into the worst bits of your spine that can have a positive effect for weeks. They can also look at the pain meds you have tried, and suggest ways to alter the doses to have better effect- splitting your meds into regular pain relief as well as having something up your sleeve to take for breakthrough pain. I know that I managed to actually reduce what I was taking, but at the same time get a lot better results - just from some simple adjustments to my meds and the way I was taking them. They may have other options depending on your type of pain as well. Definitely well worth a try. The other possibility I can think of is to strongly request a rheumatology referral to rule out inflammatory back pain (in addition to your scoliosis and scheuermans problems) - bearing in mind that you get very significant relief from steroids - which really shouldn't have that big an effect on purely mechanical pain, but will greatly relieve inflammatory pain.
Also, don't rule out something like CBT (cognitive behavioural therapy), relaxation, or meditation as self help - it won't get rid of your pain, but I know that just knocking pain back one point on the pain scale through psychological methods can sometimes be the difference between coping and not coping.
Hi. To add to the good advise from earthwitch I can offer a personal experience which may provide a glimmer of hope.
Having eaten Dihydrocodine for decades I chanced upon a Locum when visiting my GP. I popped the usual question of an increase in pain relief meds. He discussed my situation and read some of my notes and then prescribed Fentanyl patches. They opened a new door on life for me. It took a couple of weeks for my body and head to adjust but was able to take fewer DF's and manage a lot more activity and even rest was of a better quality. I found I was able to get a far better quality of life with these for a number of years. Increases of dosage happened periodically and once the max was no longer manageable I was switched to Zomorph. A slow release capsule which I am very happy with.
Hi Grey Witch, you sound just like i am except i have 120 MG dihydrocodeine plus 6 other pain medications it drives me crazy i did damage my back many years ago when i was in the army and was disabled out at the time it was just back pain which i could cope with expect for once or twice a month was always active but as years have passed i have slowly got worse i asked the army for a review of my condition (my pension is based on how bad i am) but it has just been decided by them that yes i am much worse but it is not due to my back i am close to house bound and just like you i have to plan for any time i have to go out and know that even if i have just been out to the doctors where i can park next to the door it will knock me out for two or three days where i cannot even manage to get out of bed never mind try to get dressed, everyone who comes to my house knows that almost every time they come i will not be dressed and can hardly walk if i have to go out i rest and do as little moving as i can for the couple of days before and then the day i have to go out i take double or triple my dose of morphine 30 minutes before i go out and that will give me around one hour with reduced pain level but as it starts to wear off all the pain i had hidden by the morphine returns all at once as if it had been stored u.
i have had so many different doctors give me different reasons but none of them has ever done much to reduce the pain i am very close to housebound but i have just been told my DLA is being stopped as i have been moved onto PIP and they said i was not bad enough to qualify for it.
when you go to join the army they tell you that if anything happens to you that the government will support you which is a total lie the government does not care about how bad you are they just care about what you are costing the country and how much tax you are going to pay in.
so to sum it all up i cannot give you anything to cheer you up if my story is anything to go by.
i hope you manage to get your pain sorted out back pain is the worse thing you can ever have.
Sadly, as you have found out, those in power lie to you.Soldiers are merely pawns. You think you are being given a good deal; training, education etc. In reality it boils down to being canon fodder and you are told "fight or we'll kill you" and if you are of no further use to them, they offload you with the minimum of support. After all, if they keep forking out for mangled up soldiers, the royal family might have to manage on less, and THAT is what it's all about!! p.s. my mate Karen was in the army
My story is different to yours but i felt i just had to speak to you to let you know that there is treatment out there. I urge you to ask for a referral to a pain management centre. I am seen at the Walton Centre for neurology by their Pain Management team who are brilliant and lovely people who do understand how to treat Chronic pain. I was diagnosed with Chronic Regional Pain Syndrome late last year after i had been suffering and searching for a reason to my pain. I had had a serious and difficult to treat Cellulitis in August 2012, i spent a month in hospital. Despite my skin healing my leg simply never recovered and i had a severe DVT in the bad leg the following April, i have been on Warfarin since then as the DVT affected the full vein from groin to calf, so this caused yet another problem, i have been unable to return to my previously loved job of Social Work so as you can imagine my life felt over at the age of 41, the vascular surgeon that i had been seeing agreed to a referral so the option of amputation could be considered. i appreciate that this is a shocking thing to consider but i couldn't handle the pain and disability much longer, it really felt torturous to me to be existing that way, i had been in a wheelchair for 18 months by that time, a newley qualified physio that i had started seeing recognised that she believed me to have CRPS so did a referral to Walton.
I was seen at the pre amp consultation and was relieved to hear that i was an ideal candidate for amputation and rehabilitation as i was considered young enough to adapt to a prosthetic limb........music to my ears!! i saw and end to it. However, it was to be short lived as when i told the consultant that i had an outstanding referral for CRPS i was advised that if i had CRPS amputation wouldn't be appropriate treatment since the disease affects the central nervous system as such even after amputation of my leg i would still have the same pain in the remaining stump that would be named as phantom limb pain so i would not tolerate a prosthetic limb. I remained confident that CRPS was going to be ruled out. I was devastated with the CRPS diagnosis and felt my life was over.
I was then seen at the pain management clinic and my medication was changed as apparently i was being treated for acute pain rather than chronic pain. as a result i was able to come off the Oramorph and other meds. i was put on Pregabalin, Nortriptyline to help with sleep i was to remain on fentanyl patches but have managed over the past year to reduce this from 75mg to 25mg. i am also on sertraline and am waiting to complete the pain management programme that i believe is brilliant at teaching positive coping strategies to help with managing the pain rather than it controlling my life. the swap in meds has not stopped the pain completely and i have severe flares of the symptoms but the meds have made it bearable, i'm looking forward to starting the pain management programme.
I am now going to a gym to work at regaining the strength in my legs the process is painfully slow but i need to get as much out of these legs as i can and im also working on upper body strength. i have enrolled at college on a counselling course and can at last see light at the end of the tunnel.
so dont give up, insist on a referral to a pain management clinic, if your GP who i think is shocking refuses i'd change GP or go into a walk in centre and ask them to make the referral or you could google search one and give them a ring to ask if they would accept a self referral. There is help out there
Sertraline is a brain chemical though and there's nothing wrong with my brain. After months of grinding pain I gave in when the doc gave me sertraline and told me it would make me feel better and that it was for pain. By the 3rd dose I was living in an alternate world, only half alive. I ended up burning myself very badly and nearly burning the house down, and nearly took my foot off with the axe when I split logs for the range. A little research online showed me that DESPITE me vociferous protests about not wanting any kind of brain medication or antidepressants, they had prescribed by subterfuge!!!
Sadly, I live rural so the number of alternative surgeries is limited and there are no walk in centres within 20 miles
I will see if I can get past the dragons who guard the doctors to ask my doc about a referral to pan management. I'm not hopeful. It's been 6 weeks since I told them that my skin cancer was back and I've still not had a hospital appointment, nor have I have a scan on my thyroid for over 15 years despite the nodules growing larger, and, I am 60 years old and never been called for a breast scan. When I go and tell the doc about tarsal tunnel (have no feeling at all in my heels) and the lack of feeling in my fingers he wants me to take antidepressants. When I wondered if I might have fibromyalgia ( 2 of my friends have this and I have similar symptoms) I was told, "there's no such thing, that's just another word for depression. I can try you on some tablets if you want". WHY do they want everyone to take antidepressants? Every single person I know, takes antidepressants. That is not normal!!!! Why is 80% of the population on powerful mind control drugs???????
Still I shall phone the surgery, ask to see my own doc, and give him an ear bashing. It's been a while so he must be feeling neglected.
Hi Wendy, a couple of years ago i was send for pain management appointment when i first went i was still living out of the country but the doctor started me on different drugs which one of them put me in bed for 3 months which i stopped on my own but then three months later i had returned back to uk and went for my second appointment and at that appointment he arranged for a new MRI and then went on to tell me that there are lots of new treatments available that i had not tried in the past i had the MRI and then i returned to the pain clinic for my next appointment and when i went in to the doctor he just slowly looked at me from feet to head then with his face looking like he had just stepped in something he just said there is nothing i can do for you and i am discharging you back to your own doctor and that was that no new treatments were offered i believe it was due to my finding out i am transgender and between the appointment before the MRI and the MRI i started to live full time as female so when i returned to the pain clinic i was dressed as female and had altered all my details from MR Paul Brian to Miss Poppy Ann and as he gave no reason for there not being any new treatment available for me, I had expected that some people would not like the fact i was now female but did not expect it from a doctor working for the NHS so i doubt that i will be getting any help with my pain at my local doctors every time you go you get to see a different doctor every time as they make up half of the doctors by taking in medical students from the local teaching hospital so there is no continuation of treatment i think it is now around 12 years since i was able to see the doctor i am registered with and doubt it will change much in the future.
i have recently had a review from the army about my disability and they have decided that my worsening condition is not due to my back but due to anything else that is not there fault as that way they do not have to help me and it is upto the DSS to get help but i have recently been told by them that i am not that disabled and i should be trying to find work it is true that the government does not care how we lower class end up living as long as they have plenty of money, i think it is time for a full revolt of this government and time for one that is representative of the population so as the population is mainly working class most of the MP's should be working class.
regards Poppy Ann.
Hello Grey Witch,
I know how my pain affects me so I can only imagine how much pain you must be in over such a prolonged period of time.
I have read your post and it appears to me that you have had a diagnosis and therefore you have done a lot of the work required. If you are not happy with the advice that you are given then insist on a second opinion, something can be done! If you don't mind me asking, what did they do that was different in Canada after you were diagnosed? There is also the question of your lungs, are you seeing a specialist for this as well?
Your GO is your gateway into the NHS. If they are not helpful then consider changing them. Other health professionals such as an Osteopath or Occupational Therapist may be able to refer your somewhere else. Incidentally, the Occupational Therapist that I saw was very helpful indeed. She arranged for an extract hand rail to be fitted on the stairs inside my home as well as other bits of kit.
I was a Police Officer and have recently retired through I'll health after 29 years. Over the years I was assaulted, had car accidents and wore heavy kit which I am sure did my back and hips no favours. I have osteoarthritis in both hips, my spine and other joints.
I can only say what works for me.
For me, there are two sides to consider - mental health and physical health.
I am on morphine patches as they really work for me. Other painkillers did not touch the pain. I do have flare ups and the morphine only helps a bit. I take Solpadol as a supplement when required as well as using a TENS machine. I am fortunate that I can pay for regular trips to see the Osteopath and an Acupuncturist. The latter really helps with both the physical and mental aspects. I always like to think that I have a number of tools available for me to treat my pain. Psychologically this works for me.
I have great support from my wife and family. I have a great GP who listens and responds to what I am saying. I have had therapy a number of times and found this to be of use.
I walk with a stick all the time and use a wheelchair or mobility scooter if I need to. It saves my energy for doing something that I enjoy doing.
I also spend a lot of time researching into arthritis to see what the latests developments are. In my mind, I am helping myself. My GP has not got the time to read research papers and journals whereas I have. I am a member for Benenden Healthcare and they helped to get quick access to an Orthopaedic Consultant as well as MRI scans for a diagnosis.
I hope that my long posting makes sense. I also hope that you find a relief for your pain.
You sound as on the ball as I am. I research things, see the M.O. and ask him and he poo poos it.
All he wants to do is give me antidepressants! If I had the money to pay to see a proper doctor, I would. As it is, I live very rural with few other surgeries around. The one I am with is very bad, with bad reviews and even a facebook page for people who are with them. I was once even sent home with completely the wrong drugs! When I phoned to ask about them (after having taken 2 days worth) I was told to bring them back and they would swap them. That was it! I still have no idea what they were. I eat properly and take supplements to help with the pain. I stay as active as I can, but I really don't see my doctors as being much cop other than to dispense my usual cocktail of drugs. For instance, because of my spinal curvature, I asked one of the doctors to issue me with a seat belt exemption. I live very very rural, go out once every couple of weeks (I drive 2000 miles a year), use unclassified roads and B roads, with one A road into town. I meet little traffic and, because I have 'my lads' (dogs) in the car with me, I drive defensively. I have NEVER had an accident in my life. Because of how my spine twists, the seatbelt pulls on the side of my neck (I am little so the belt actually goes across my throat even on the lowest setting). So, I need the car to get the 6 miles to the nearest shop. However it's 6 miles of pain and lack of concentration as I try to hold the belt to stop it pulling my spine where it doesn't want to go. So I asked about the exemption and was told " seat belts save lives. If you ever *did* have an accident, you'd be glad of it! Besides, I don't know where they are kept". Not sure I would actually be glad of this bit of nylon across my throat if I was rear ended by a slow moving combine harvester.
I would have a chat with your local motability dealer. There may be an adaptation that can be made for your seatbelt. You cannot be the only one with this problem. This may be another way around it.
I have nothing to do with motability. My car is my own. My spine is so twisted it's like a corkscrew and anything which pins my hips into a straight position in the seat when I need to be able to sit twisted slightly with my right shoulder forward and not have pressure on it forcing the shoulder back, is going to hurt. I drive about with the unclipped seatbelt draped across my body so it looks like I'm wearing it properly, otherwise I'm not fit to drive because I'll be jiggling ad fidgeting and concentrating on how much it hurts.
Sorry, I meant that a motability dealer may have already made an adaptation like this before. I have seen too many accidents during my career where a seat belt would have made a difference. I did not wish to offend and apologies if I did. Your life, your decision.
As I have already stated, I do 2000 miles a year on unmarked and B roads, doing around 30mph with not one accident in my whole 40 years driving. I'm more at risk of causing an accident because of the pain than at risk of being in one and getting hurt because I wasn't strapped in. I must admit I hate the nanny state which dictates that I must follow laws which insist I'm not allowed to take risks with my own body. They are as silly as drug laws frankly.
If I ever drove on a motorway , I'd wear one, but pootling slowly around outside villages on mostly single track lanes is hardly high risk lol.
Not sure that the risks are quite like that - I do recall reading that a huge proportion of injury accidents actually occur within about 25 yards of your driveway! Seriously though, finding someone who does disability driving assessments of car adaptation advice might be very useful -who knows, the option they might recommend could be exactly what you are asking for - a seatbelt exemption.
surely that is a generalised statement? Within 25 miles of my land (farmhouse) there is no traffic, single track lane and open fields. But I suppose a rock might fall out of the sky and hit my car lol.My doctor should be the one who knows me, knows my particular problem and issue the exemption. I shouldn't have to pay to see a stranger who recommends the thing that my doctor doesn't agree with. This is the same doctor who doesn't believe in Fibromyalgia and thinks that the world will be a better place if everyone is on antidepressants.
I refused to fork out money for special adaptations on a car which I will keep for a couple of years at most, then stress myself out, driving around the area trying to find someone to help me get the exemption to which I am entitled. It seems like rules and laws are aimed at controlling people instead of helping them. I'll carry on driving without the seatbelt and take my chances at being caught by the non existent police presence.
I live so rural that when I had hooded intruders, it took police 45 minutes to get to me and the lady on the end of the 999 call I had made, told me to lock myself into a room and stay quiet because that way, they would simply take whatever they wanted and leave.
I am coming up to my 50s and I feel like what is the point? But for my kids,not sure I would bother to still be here.I have an incurable nerve pain after a car crash and an initially successful fusion, my pain has returned worse than ever.Inlove doing garden work heavy lifting. Cutting the hedge, use to be a weight lifter and string swimmer, but all that is behind me now as the pain in 24/7 and unbearable.That there is no cure for nerve pain in this day and age is baffling when one thinks of many medical advancements made so far.I thankfully have music as my relief, a distraction as I forget the pain when I sing, though that is only a minor help,as the minute I finsh singing my pain is right there and it takes everything out of me for days.I relate strongly to your feelings about this constant pain and find it frustrating that there is no medicine that really works without horrendous side effects.I can only say hang in there, you are doing the right thing by letting out all the frustration here, sending you positive vibes.
I am still waiting on pain mgt will not be seen until Feb 2015 unbelievable grrrr rant over
Hi firstly I'm so sorry for the pain you're in & that you were forced to loose your animals. I understand about pain as I have nerve damage in my right ribs & I have lupus. Would you consider being referred by your GP to a pain management unit? I'm on a cocktail of pain meds but the one I would suggest to you is called Fentanyl patches. These are 80x stronger than morphine & DONT make you sleepy. They are changed every 3x days. Let me know your thoughts & how you are feeling. Take care x
I have a friend on Fentanyl patches. However what I read about them after she recommended them, put me off a bit. I'm definitely going to tell the doctor to refer me to pain management and speak to them if I can get him to agree to the referral. I plan on changing doctors to the only other one within a 4 miles radius to me and see how that works out. I have lost faith in my current surgery, all apart from Dr Rudd who is a brick.
I understand your concerns about the patches as I did too. However I was told by the hospital staff at the pain management 'you can either stay at home & have no life or you can take the meds & enable to lead some sort of normal life & leave the house.' Just a thought for you x
Hi.Grey- witch.. My god..soz..you sound so much like me..I started in 22.. When was!! Chest. Back pain..fobbed off. Till turned 31. Told had 3 level DDD. Had spine of f 65 year old..had injections.. Pills.you name had..last year got very pain full.? Sent to newcast.had MRI..again. Told had adviced osteoarthritis.. My hubby cryed..think now he believed the pain..can't get ouyta bed.had to be moved slow to side..then up...any way told had bad slip in back a excured disc sat on SL nurve causing true sciatica.. Made me fro up..the pain..time forward by time my op day came disc pain felt better.told go physio come back in few month.. Well..physio said only met too men who had this.?one was body builder. One build houses.. One man needed op in end. Second man never got better?! Wekk felt good..?he saw me 4 times said really worried !!something not right..took me gp said needed another MRI.. Had..told have curve scoliosis??? Spondy???somet and a excursion ouyt over side?? 3 discs out too..not one gp explained??!!started with bowl e lacking told nothing... By way been 5 week haven't been bathroom for nummbver 2!!! Just wind comes out...pain clinic fobbed me off.. Just been last week for another MRI has spine gp said I nheded hips looked at..I am sick!!of fobbed off..really....I've 2 autism boys a 13 year old a dog. A 90 year old grandad.a 86 dementure gran..and a mum who's body is giving up to drink..NY dad died with this drink.. My joints hurt so bad..shooting pains in my elbows..eyes.head..knees kill.no feeling in bits.. Just turned 39.... I am really worried sick.. Feel ill most days...I knew hard work..had 3 jobs up to last year...feels my body's giving up.. Your message touched my heart strings...advice be fantastic.. On morpie.preapentin..the bog things worried mW..?you seem to sound so much like mW...never found no one willing to help!!!!!by way think your grill looking after all those lucky animals xxxxxxx blesss
you must be aware that Scheurmann's disease and osteoarthritis have got nothing to do with muscle pain? Personally I dislike people coming onto a site like this and spouting their religious babble nonsense!!!!
That is unfair. Muscle pain has an quantifiable effect on overall pain. Osteoarthritis included. Muscles tense to support joints and over time, become like rocks. There are tiny muscles between The vertebra of the spine and each muscle then calls upon the next muscle as it becomes less effective. I am not alone on this site in benefiting from sports massage therapy, loosening off those over protective muscles. With chronic pain, the muscles can forget that the pain is no longer acute unable to turn off. Yes, muscles have their own kind of memory system. With chronic pain, keeping an open mind is essential as the reasons for chronic pain are vague to say the least.
It was not unfair. My muscles are fine and nobody is going to stop my pain by massaging and getting me to pray to some mythical bearded bloke sitting on a cloud. Religious people are the least open minded and on a site like this there is no place for snake oil peddlers!
There was nothing in Ether64s post with a religious connotation. Unless there was something on her website, which I was not interested in looking at. Is that where you saw it?
Hey grey witch. I just read your post and it resonated with me in so many ways. I've am in that "what's the point in it all" place so often. I can feel for you with looking out on land going to weeds and not doing the things you love. Like you I have pushed my body hard all my life, taking pride in how much I could lift, the contortions I could put my body through. I've been shamefully comparative and taken great pride in being stronger, faster and fitter than my peers. I'm 64 now and those peers are setting off to far flung places , climbing hills and sitting comfortably through films and plays. Pride before a fall. I am wedded to my tens machine and never have full pain relief.
I'm going to try hypnosis next to help me cope with the pain when it become unbearable and I sink into a suicidally black hole. ( I doubt I would ever do it but sometimes I want to).
There seems no facility to correct these posts. I did of course mean competetive not comparative.
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