February 7, 2017 at 2:34 pm #43476
I have just joined the forum. Site looks great and lots of helpful and useful information. Well done to those who have set it up.
I have been seeking pain relief for 7 years for cervical spinal pain. I have had various treatments (including spinal surgery) but all to no avail. I have also had to give up work.
I am bewildered about my pain. I do not find the medical profession very knowledgeable. Drug treatment seems to be their main response (at least here in Wales where I live). I have yet to be referred to a pain clinic. The kind of help that I need does not seem to be available (or at least I have not found it yet).
While I subscribe to notions of ‘self-help’ and ‘owing my own pain’, I find this philosophy is only helpful if it produces some benefits. In my experience of pain, it is of little or no help. Being left on your own to make sense of it all does not help me.
There is also a confusing array of treatments out there which serve to confuse rather than help. Many also are in the business of making money out of people’s pain.
I am just wondering do other people in chronic pain feel like I do about the situation. Are there shared concerns and if so, what can we do to change it.February 8, 2017 at 11:02 am #43477
Welcome to the forum. I agree you can’t really ‘own’ your pain or manage it yourself without a lot of professional help first. I also found personally I had to push to get the assistance I needed, which was frustrating, as I didn’t really understand about pain management at first. I was eventually sent to a pain management clinic and got good help from them, however, the procedure I needed wasn’t offered at that clinic, and it took 3 years to get to the person I needed to see. Certainly a pain management course is a useful course to do, as you meet others in the same boat, and get good management ideas. I learned to pace myself, and question some of the old ways I would do things. Have you been refused a referral to pain management? Your GP may not be aware those services are available, so a bit of research on the hospitals locally might be good, before you speak to the doctor. I was referred by the Occ Health doctor, who is very focused on management of conditions if there is no cure. When I spoke to my GP about it later, she was very surprised that such a thing existed, just 40kms down the road. So pain clinics and pain management courses do need to get out there and let people know they exist.
Hope you get referred soon. TFebruary 8, 2017 at 11:25 am #43478
Thanks Navchic for your welcome and suggestions.
Yes, the nature of the professional help in the early stages seems really important. I should have said I have not been referred for pain management. I do attend a clinic every 4 months or so. But the only treatment on offer is drug related and honestly I get more help with that from my GP. Part of the problem in Wales is that good pain management is not readily available and difficult to access. Apparently, they don’t refer you until you have given up on other forms of treatment. I will continue to seek referral to a pain management programme.
Yes, totally agree that pain clinics/management need to promote themselves. My guess is (certainly here in Wales) that they have limited resources and are not seen as a priority within the service.
Part of the reason I wrote this post was that I found the response to chronic pain from the health services in Wales pretty poor to say the least. And wondered if people had similar experiences and concerns in other places
MartFebruary 8, 2017 at 4:41 pm #43479
Over the last 15 years te help I have received has been minimal until I found my present pain consultant. I’ve paid privately to see three neurosurgeons; one of whom admitted me immediately on eh NHS, got his pain team involved and they gave drug treatment that did help. That had taken 2 years up to then. Privately I had nerve conduction tests and saw another pain consultant. On the NHS I’ve seen3 different pain consultants who offered absolutely nothing except gabapentin and amitryptilene. The hospital that admitted me couldn’t do any of their other treatments like CBT or pain management because I didn’t live in their area and they were overstretched with their own patients. Our local pain services are utterly useless and offered nothing. The pain consultant I see now is like a breath of fresh air. He gave me a diagnosis; something I’d been saying for 12 years and said it could have been cured if it had been diagnosed at the start. His unit can offer pain management courses, spinal injections, nerve ablation and drug treatment. The only problem is it’s a long way away and I can’t physically get there on a morning and there are very long waits. In the NOrth West, pain management services are dreadfully poor and vastly under funded. I’ve been waiting now for 9 months for an appointment for nerve conduction tests and there are still no appointments available. There must be hundreds of thousands of people living in chronic pain who get no help at all except being pumped full of drugs that barely make a difference.
I’ve tried umpteen alternative therapies; only Bowen therapy really helped and have seen an osteopath and a chiropractor. The local physiotherapy services had no idea how to treat chronic pain- not even my fibromyalgia and actually caused extensive damage to my shoulder by doing traction before I’d even had an x ray.February 8, 2017 at 7:59 pm #43481
Sorry to hear you had such a difficult time getting the help you needed. Glad to hear you found a consultant who made a diagnosis.
I agree that pain management services seem to be very patchy, poor and underfunded across the UK. This seems to be the case here in Wales. Drug therapy seems to be the main treatment and as you say with limited results for most. As a result, it is very difficult for those of us with chronic pain to access proper assessment and treatment. The lack of clear information and knowing where to access it is also problematic. Is is even more so when you are in chronic pain. You have to be made of strong stuff, be persistent and have money to get the help you need.
Good luck Di with your tests and treatment. MartFebruary 9, 2017 at 3:17 pm #43482
Hi Mart, Been in persistant chronic pain with nerve damage/ pain, and arthritis for over 20 years now. At first all they wanted to do was dope me up on pills until I voiced that, was there other ways. been on pain management coarses, pain clinic and physio over the years then about 5 years ago was diagnosed with clinical depression.was told that i needed councilling but it was not funded in my area so had to pay. then i got that bad they put me under the mental health for which any councilling was free since then had CBT which run continually into mindfullness for which Im on my 3rd week now, and I’m in alot better place than i was. I have taken bits from all of these that worked for me. and now understand my pain which can cause secondary pain which messes up relationships with people.and loads of other stuff. with the continuity of CBT and mindfulness i am in a better place to fully understand my pain and to deal with it and excepting it and yes I have changed as a person but for me its for the better. I only take amitriptyline 20mg and any pain i cannot deal with take naproxen and co-codamol.and also use a Tens machine and use heat raps. but right across the country it seems a post code lottery. Hope you find what your looking for as we are all different to what works best for us wether its medication or other methods its all a bit of trial and error for what works for you. but a combination of things I found is the best route. Take care and best wishes . LeeFebruary 9, 2017 at 3:39 pm #43483
Thanks for sharing your story and glad to hear you are in a better place now. Totally agree its a post code lottery and that we have to find what is best for us. Just wish it could be an easier route rather than what seems like a long hard road. I think we need better forms of help/guidance in the early stages especially from the medical profession. Drugs seems to be their main form of treatment.
Good luck with your CBT. MartFebruary 9, 2017 at 6:47 pm #43484
I have had back pain for over 20 years and have exhausted every avenue in a bid to find out what could help me. 3 operations, countless scans,epidurals,nerve blocks etc. etc have left me in a much worse state than when I started. I remember a man on this site once said ‘if you look long enough you’ll find a surgeon to operate on you’ and he was so right, I went to so many doctors and then thought my life would be ‘saved’ by a neurosurgeon who promised to help me (it wasn’t true and later doctors tried to blame me for having surgery!).
What I have learnt is to know what you need to help you through the bad times, whether tablets, pacing or other therapies. Also I’ve learned that few people whether medical or not believe my pain. One ‘friend’ asked to see my scar to prove I’d been operated on! Doctors in other fields have mentioned to me that nothing works for back pain. I get by on amitryptilene 30 mg to help me sleep. I’ve learnt how to live with my pain but that doesn’t mean it doesn’t hurt still!
Hope you get some help soon.February 9, 2017 at 8:03 pm #43485
Thanks Laura. I can very much relate to what you are saying as I have had similar procedures to no avail – scans, injections, surgery etc. Also a medical profession that treat only my pain (badly) and not me.
I agree that you need to know what can help you. Unfortunately many of us seem to have to endure a lot of unnecessary and ineffective treatments over a long time to find this out. Also I agree re other people. Our pain is invisible to them and most feel uncomfortable talking about it or accepting it.
Glad to hear you get some help from amitryptilene. Drugs don’t work for me and cant handle the side effects at large doses.
I think the trouble with many doctors etc is that they think they know about our pain but they don’t. They have their standard treatments and when they don’t work they think we must be exaggerating our pain. They don’t see us as individuals and that our pain is very personal to us. There is much work to be done to educate them.
Thanks again for responding and all the best to you. MartFebruary 9, 2017 at 10:48 pm #43486
Totally agree that the majority of doctors really don’t understand either the magnitude of our pain or how it affects our lives; even pain consultants who may know the technical side of it but have no real understanding. My own lovely GP actually apologised to me when, after 12 years I finally got a diagnosis and admitted that he had really thought I was exaggerating the amount of pain until he knew what was causing it. He also apologised for not believing me when I self diagnosed some 10 years previously. I did get reasonably adequate pain relief from him and he completely understood that the effects of constant paid andteh change of lifestyle caused depression and was happy to send me for CBT when I requested it. However I don’t blame most of them. It took over 10 years for my husband to admit that it was real and he still doesn’t understand it. I don’t think anyone who hasn’t experienced constant chronic pain can truly understand what it’s like- especially the professionals. It’s easier to understand mental illness than chronic pain.
JUst yesterday I asked him how I could improve my physical fitness; get some cardio vascular exercise and lower my Blood pressure when I can’t walk anywhere , stay upright more than a few minutes or use my left arm. He had absolutely no idea. There is nowhere in this area that treats the whole person with anything other than drugs. I need CBT. I need some form of exercise; I need dietary advice; I need something to force me to leave the house and I need advice on what kind of exercise I can safely do given my physical limitations. I garden in short burst; when I can I take my dog out on my mobility scooter but I see no one and I don’t know what form of exercise I could do without causing a flare up. We need holistic treatment not just drugs.February 10, 2017 at 7:45 am #43489
I agree with what most of what has been said.
I have a history of – pain without mecanical cause and my husband is also unable to work due to his chronic pain. I am a long term ME patient, and pain has changed over time, but essentially as I understand it my body creates messages when there is no cause, and amplifies mild pain into moderate to severe.
It is definately a postcode lottery, but I think there is a worldwide need for more help for people living with long term pain. This is something you only find out about when you are in this position!
I am very lucky to have a GP who is very patient and happy to meet with me once a month and work with me on pain management but even so I would say it is poorly managed. I think not enough is known about pain and so professionals really don’t know how to deal with pain patients. Some things work some of the time and some things work for some people with side effects- essentially there is the need for ‘bespoke paincare management’ as what will work for some people is pointless for others. There is no ‘one answer’ and it is incredibly frustrating!
Di – sadly I am in the same position…as doing anything makes pain worse.February 10, 2017 at 8:59 am #43490
Hi All, sounds like we are all in the same boat when it comes down to medical proffession to help us when we suffer pain unexplained or not, and we seem to be left in a shady place. and have to find our own resources to help ourselves. as the medical profession seem to only help if it is something mechanical or electrical faults with us by medication and operations. I’m afraid this is there limit. and as individuals we have to find what actually helps us with what we find out ourselves or with some guidance from medical profession. It is a long sometimes lonely road to go down with sometimes what is seen as no help. they try to help you but sometimes it can make you worse. only you know your own body and what it’s telling you so only you can help it. by whatever means that is out there. Take Care all and Best wishes. hope you all find some relief from your pain. LeeFebruary 10, 2017 at 9:11 am #43492
I agree with last two posts. Some GP’s (a small number in my experience) do try to help. Any you are both lucky to have decent GP’s.
We all seem to share similar (mainly poor) experiences of the help on offer from the health service. Also we agree that pain is a very personal experience and affects each of us differently. And I totally agree that we need a more holistic approach to pain and pain management.
Our first port of call with pain is usually the GP. I would argue that unless there is a proper assessment at that stage with various options for treatment most of us end up getting drugs, injections, surgery etc. We need to be helped to understand our own pain better at that stage and be given choices for alternative treatments that are safe. MartFebruary 10, 2017 at 1:26 pm #43495
Th etrouble there is that when people first see their GP it is for sudden excruciating pain and in the first instance all they want is relief and then to know what’s causing it. They don’t want to be told it’s probably permanent and how t o learn to live with it. In teh first instance they want pain relief and then a diagnosis and cure. It’s only way down the line that people start to think about alternative treatments and lifestyle choices.February 10, 2017 at 2:47 pm #43496
I agree Di. When I went first, I wanted something to stop the pain and to find out what was causing it.
I agree that its only way down the line that you become more educated about your pain. Often after a lot of time, money and failed treatments. It seems we have to learn the hard way at great cost to ourselves. In hindsight and for those coming after us, I just think people should have better and clearer help at the start . Human rather than websites etc. We go along with the doctors because we think they know what they are doing. Its only later that you realise how little they do know about pain. Mart
You must be logged in to reply to this topic.