I am knocking on an ever disappearing Door, only to be met with a wall, and a whitewashed one at that.
Yesterday I went to see another Consultant to get him to look and review my case in the hope that what I'm saying would prevail over and above the usual defensive wall I've met from these Powerful Consultant's; who's defending of the ring fenced shield around themselves, is more important, than the symptoms and fact's from their patient's.
You see I think that the term Chronic Pain, May be used as a way to hide the many error's and mistakes within the NHS , am I correct ? or is it that I am looking for scapegoats ? .
Yesterday I went in to get a second opinion from another hosp from a different Consultant, I was dubious about doing it as I thought they would only dig their heels in deeper, after all what Consultant would dare contradict such a powerful force from the supposed top neurological dept in the UK.
Yes we may expect too much from these put upon Consultant's and doctors, but what oath comes first, is it to their colleagues, or is it to their patient's, " To Do No Harm" , you see the point about hiding things from the patient because it will do them no good to know the full extent of their problems. But what if you as a patient are relying on as much information as possible so that you can find a way to manage your condition, for I know that in my case I believe that I may not have continued my regime of exercises and walking that may have led to it making my condition worse, , and may have led to unnecessary treatment, (Prostrate Cancer) .
Have you ever been patronized by your Consultant, that you don't know, or that they know whats best and that that's it, now go away and live on strong painkillers, or they have caused you unbearable stress, by refusing to accept that you know the fact's, and that you have lied, or forgot about a fall that has caused all your problems, symptoms that you have bombarded them with for years, only for them to change diagnosis, as and when they deemed it best, for their stonewalling wall to stand up.
Have you had your clinic fail to pass on the fact's to another Hospital or Consultant, because hiding their true suspicions would have left them open to ?? well only they know if and what is true, only I know the fact's and symptoms, and what caused them, and I suspect that they know exactly what I say is true, and it has led to making me worse, in the short term and in the long term, and that is unforgivable . It must not happen again to anyone else, and I am going to try my best to see that it does not .
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coolpolitealex
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I can't remember the percentage off the top of my head but - the number of chronic pain patients who ever get a diagnosis is huge
It is human nature to know what is wrong with you and even as important why? You will know the definition of chronic pain but the why can evade the best consultants.
I have yet to meet one who is anything less than dedicated in his job. Wht would they want to work with people who will never be cured when all their training is to make people better?
Some may leave their bedside manners elsewhere but their priority is always to you = th e patient.
Can you imaine day after day seeing people who have the worse pains ever? CRPS? Having to amputate lims to try and stop that pain? Dosing you up with very stron meds hoping your organs don't disintergrate before you get some minor relief?
They are highly qualified anethitists who do pain clinics as a part time job. Underfunded and understaffed which is a national problem because you never get better.
Can you guess I am a huge fan??!!
Have a rnt here and smile nicely at your consultant. You may be surprised!
Good to see your reply Pat. We hope for so much empathy from our health care professionals but sometimes forget to show that empathy back to them. We want them to be wholly human and forget that being wholly human means that they are not infallible,they get tired get overstretched.
There are some out there that should not have opted for the front line medicine as they genuinely find it hard to interact properly with patients but they are few.
Good reply Pat! I too am a huge fan of the pain clinic Drs, saw mine yesterday who was the first consultant to explain very clearly my diagnosis to me. He explained how following my fracture, the nerves have been damaged and that's why the pain is so extreme. He was lovely and so understanding, he said that it was awful that he saw so many people in such pain that could not be 'cured' and that it was his responsibility to try and manage the pain in the best way possible.
I have also tried to 'put on' my teacher voice when speaking to the consultants, speaking to them in the same professional tone that they use with us. This often changes the tone of the meeting.
This chronic pain life is tough for us all, take care peeps! ☺
I have seen many consultants over the last 35 years. I believe that you may be seeking a scapegoat because 'chronic pain' is a bit of a catch all. Similarly though I can understand your frustration. Many consultants are very good in their area of expertise, but have very poor people skills.
Complex Regional Pain Syndrome is a name tag. Sufferers experience similar but not always identical symptoms. My understanding is: an injury causes pain at the site of the injury, but can also cause, or result in nerve damage. It's the nerve damage part that causes pain & problems. & poor diagnosis.
One consultant I saw, simply could not say, sorry but there's nothing I can do to help you. Instead he made me feel like I had deliberately gone out & injured myself just to annoy him!. I do believe some consultants find it very hard to tell a patient nothing can be done & that you're just going to have to live with pain & learn how to manage it.
I think that's why you feel they're hiding something from you. In most cases it's poor people skills on their part.
I've also had the opposite experience. I saw a consultant last November re my almost daily migraines. He told me what pain, auras, distress and major issues I experienced with the migraines. It was so refreshing to talk with someone who fully understood the hell I was in.
I don't know if sharing my experiences is helpful to you, but I hope it is. Also please remember chronic pain is really unfair, & many sufferers often feel people don't believe them.
I think that if your "diagnosis" does not attract research money, they're not interested. I have been patronised by quite a few consultants, one of whom told me if they had "a magic wand, they would wave it". Yes. I was flabbergasted by that one! You are not alone....
Ah too many apologist's I'm afraid on this board, to do any good in the long run. If it is not up to those struggling to manage, with limited tool's from the NHS , then who is it that knows just what is really going on.
Being judged and discarded is something that should not happen to anyone, especially when the Judging is wrong. I am not judging Consultant's, and No they are not all to blame, Nor am I totally innocent, but there is something wrong and it is compounded when behind the scenes the mistakes are still on show for anyone who cares to take the time to lift the stone and look under it.
Nobody want's to criticise Doctor's and nurses, what benefit is in that, when you know your health is getting worse, and if you can't get any help now, what's it going to be like in the coming years from the very same dept's who refuse to acknowledge the problems now.
I think it all depends - some of you are lucky and seem to have really good pain doctors. And some of us aren't. Here's my experience - as brief as I can make it as it's a long story ...
First diagnosed with fibromyalgia around 12 years ago. At first, I assumed this was correct. But once I got talking to fibro sufferers online I found that my pain (deep within the major joints) was totally different from theirs (burning, tingling, stinging, etc - I don't get anything like that, and mine's constant in the same places whereas theirs moved around). So I kept nagging my GP for more tests (I'd been discharged straight away by the rheumatologist who diagnosed me).
Fast forward to my worst pain - in my shoulders - along with worsening lack of movement in them, especially the right one. Managed to persuade my GP to send me to another rheumatologist last year as the pain and lack of movement was getting unbearable. It was really affecting my sleep - was being woken every time I moved in my sleep as the pain was so bad.
That rheumy didn't even examine my shoulders - just did the 18-tender point test and reconfirmed my fibro diagnosis. She was offhand and unpleasant. Now, to confirm fibro from the test you have to have at least 11 of those 18 points which hurt when pressed. I had just 4 - guess where? The 4 on my shoulders! But she didn't believe me that none of the others hurt so she still sent a patronising letter to me and my GP.
Fast-forward again to this year and I'm just about ready to throw in the towel with the pain in my shoulders. Persuaded my GP to send me for an X-ray on my worst one (they wouldn't X-ray them before - said there was no point as nothing would show up). Got the results back. Suddenly the GP was all alert and attentive - "We're going to send you for an ultrasound scan". Ultrasound scan showed calcific tendonitis - ie. calcium going to the wrong places so my tendons are turning "bone-like". No wonder my shoulders didn't want to move and were painful!
So they left me for several years with the calcification getting worse and worse, just because everyone was convinced it was fibro. I've been made to feel like I'm a nuisance, an idiot, a hypochondriac, someone who just couldn't cope with a bit of pain. Am I angry? You bet I am! So I hear where you're coming from, Alex.
By the way, I've now had a steroid injection in my worst shoulder which has got it moving again - the difference is amazing. I've come to realise the only thing to do if you're a chronic pain patient is keep fighting for your rights, keep researching, keep learning how to manage your condition yourself - from my experience, the doctors aren't going to do it for you.
Thanks, Sandylou. I should add that I see people here are talking about pain clinics. I was talking about treatment of chronic pain patients *generally* - whether GPs or consultants (of whatever kind) are dealing with us. In my case, it's all been left to my GP - who I think is probably way out of her depth. I've had to ask for referrals myself. I did ask her, and get, a referral to a pain clinic once - they put me on meds but then discharged me back to my GP, so I've no ongoing care from a pain clinic. I'm rather envious of those of you who have got ongoing care from a pain clinic - especially those who have good doctors there!
I like you Caroline Was referred by my GP to pain Specialist who took quick look at my file...said by the meds I. In after so many years that he was taking my case very seriously (hello does he decided the next one he won't???) put me on Gabapentin 300 tablets 3-4 times a day...requiring Government special Script each time I run out and is not on PBS so have to get from Hospital Pharmacy.....then I never saw him again......but gotta say my GP has been great.....he's South African and used to isolated towns and therefore very good at injecting painful neuroma sites etc refers me himself for any Physio, Home Help at Hospital, just never saw the Pain Specialist again....but he is 600 km away, so GP would send me if I asked prob, but the damage the travel does is hardly worth it for me.....wishing you all the best and thinking you probably close to a Hospital and usually once u r referred you should ask your GP to write another letter of referral and ask the Pain Specialist for more proactive treatment??? Hugs. SandyLou
To be honest, SandyLou, I've decided I'm better off "doing it myself". All the pain clinics seem to be interested in is dishing out meds - and I'd rather not be on too much pain medication if I can help it. Now I've got the calcific tendonitis diagnosis the GP is taking me more seriously. I've just had some more tests and I've got an appointment with her soon to see where we go from here. I feel I'm actually being listened to at last. So I'm a lot happier now.
Good for you...continue to be proactive in your treatment.....I often wonder if the myriad of meds I'm on are necessary but GP runs thru them all each visit and doesn't try to lower them....think he sees me at the end of my fight now......basically I can have wat I want......suffered for soooo many yrs.....so I manage them on my own, do my own self withdrawal each year from ea med.....horrid but keeps levels from rising and feel like I'm in control with something at least lol.
I am so sorry to hear that Caroline,mine are not that bad,and you are right about getting a good pain clinic.But I am in London and it is riddled with egotistical Doctors too used being obeyed due to the Teaching Hospitals being filled with young acolytes and where gossip does the rounds very quick. I do wish you well in finding a good pain clinic.but you have a good Gp sounds like best Alex
Some years ago I went to see a local pain specialist and I felt that he deliberately caused me more pain with his non medication "pain relief". Some of these people are monsters.
It is the arrogance of them that get's to me, in every appointment after I told my psychologist about being hit in the chest by a consultant, he walked in and then practically punched me, refused to give his name then walked out again, I was already talking to another consultant when he walked in, and the vindictiveness and reactions ever since has been terrible, so it can be problematic sticking to your guns, but if you are telling the truth, we owe it to those coming in after us, who may be forced to meet the same fate from the same individual doctor or nurse .
Oh and then there are the spy's, but that's another story, for these trust's are very powerful, and they are expert's at digging themselves out of sticky situations and it's difficult for me , but hey ' bully's come in many guises, and must be pointed out by us all, even if that means sometimes going through it for a while, best Alex
I have seen a multitude of people in two different countries NZ and Aus......but the truest words said to me by a Relieving GP in small town who only came back to cover normal GP but was Technically Retired was "You have a fate worse than Death" I nearly smacked him rnd the head but said Excuse me? To that he replied: well you have as much pain as a person with bone cancer but u r not going to die!!! As long as you have a strong heart you will live on and we will always have to restrict the pain meds you are on as there is not going to be a death to justify the means". Twenty yrs have passed since that day and I still remember that old man that day giving me the reLity check....."a fate worse than death" ....
You are in a difficult situation. The situation you find yourself is that you find the mass of quality clinical data is unreliable. The diagnosis based on a snapshot of time made when you saw the consultant does not match the situation that exists 24/7. You up against the system where the majority is happy with the snapshot diagnosis and believe that things are acceptable. If the majority believe that the way things are done is acceptable then you are forced to accept what what the majority think is acceptable.
I believe change is needed. There are others who believe change is needed. The change that is needed is help with developing the skills to investigate your own condition.
Reply if you want to develop this further. I know of a vice chancellor of a top UK university who wants to take this idea further.
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