neuropathic (nerve pain) : information

We had a presentation at work yesterday about neuropathic (nerve) pain. They gave out some leaflets about a website about it :

nerve-pain.co.uk

It seems to be sponsored in some way by Pfizer, one of the big drug companies, and I am in no way promoting them, but I thought the website was worth a look and does have some useful information. I think the graphics describe it well, and might be helpful in explaining to non-pain sufferers what it is. Pain Concern also gets a mention.

I know I intermittently get neuropathic pain. What I hadn't realised was that includes the stabbing sensations in my tongue - it's not my imagination after all! I think my lack of knowledge & understanding meant I played down my pain & wasn't very good at describing it - I always thought pain was the "ouch!" sort but now I know it includes all those other itchy, burny, stabby, etc unpleasant sensations. I realised with a shock how quickly after starting with the common or garden pain the neuropathic pain followed - within weeks, but it didn't get a mention for a couple of years.

The speaker, a hospital consultant, said that he always tells his patients, "I will help your pain to be better but I can't take it away completely". No one has ever said that to me, I came to that conclusion myself. I think the phrase, "this treatment will be palliative only" was used once. I work in health, I should know what that means, but somehow it didn't register at the time. I hope the consultant really does use plain language. Sometimes I think they (and maybe I've done it myself when I'm at work) think they've told a patient something quite obvious, only it isn't obvious to the patient.

I also had a little chuckle to myself when he said it was important for patients not to sit & think about pain - 45 minutes of sitting listening to him going on about it, wrapped up in a heat pack probably wasn't the best bit of self-management. Played "pain drug bingo" and rewarded myself with a chocolate from the tin in the office for every drug he mentioned that I've tried - good job I've steered clear of the opioids or there'd be no sweeties left for everyone else.

Not sure my own language is very clear tonight. I am a bit co-dydramoled. Way-hey!

5 Replies

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  • thank you

  • Funny how the brain plays tricks - I was told that surgery would make me "more comfortable" which somehow I took to mean would get me back to normal - took me ages to realise that this was as good as it gets!

  • I would love to do some research on what health professionals think they say & what patients actually hear them say. I know for a fact that my own patients have been told something specific but they may forget it or interpret it differently. We all hear what we want to hear.

    It's like telling a patient they have "a growth" when they've actually got cancer. Whilst "a growth" might sound less frightening, it's not exactly being honest. With pain we are all looking to get rid of the damn thing, so if you're told you're going to be made more comfortable you're going to assume it's all going to go away. Harsh as it seems, we might all do better if we're told the truth.

    Then there are the occasions when I've been told that a certain pill or treatment will definitely make my pain go away & it hasn't. Wild promises are even worse.

  • Hello teardrinker

    Regards pain, I was always told that pain is a personal pain, a private sensation that only the patient can actually describe. After many courses and trying to work out pain as a number were 1 is ok and 10 has you climbiing up the wall with a manic look on your face.

    What gets me is, after a long period I find although you are in pain the whole experiance becomes an ACCEPTED PROBLEM that you forget to mention when you visit the specialist, over a long period. You become far too much accepting of this trying sensation.the unwelcome friend.

    This problem becomes worse as you loose your specialist to retirement , Now the acceptance

    becomes more than sharp, the fact that the partnership with the old doctor, and you are pushed into a relationship that can push you back to the early days of your complaint and you have to start all over again to make a new relationship, in some instances the relationship that you have lost makes you dot the eyes and cross the Ts You can become concerned that you are not explaining yourself fully and panic that you have missed anything out. You sit in the car with panic in your eyes hopeing that the doctor has read 200 pages of your complaint

    and you hope that she understands the pain count that you are useing.

    It is funny really the relationship you have with these people can sometimes last longer than some marriages, hypothetically. the whole situtation is of loosing a friend.

    One wonders if other patients have the same problem, it is not a relationship as such more like a partnership were symptoms are not generally talked about , they are understood.

    It makes you think. My new specialist seems to understand as do the nurses that I have known for the same number of years

    It seems to be a novel problem.

    All the best

    BOB.

  • I agree with you, Bob. As for working in partnership with the people managing your pain, it is so important to find someone who understands you, and that you trust them. Our local GPs are planning to merge into one massive practice with no guarantee of seeing the same doctors - our practice has promised to stay separate, and I so hope that they do so because my GP has been great about the pain, but not all GPs have the same philosophy or experience. I am very reluctant to see anyone "new" for as you say, you have to start all over again. I have finally got two fantastic pain specialists who understand not only the pain but the detrimental impact it can have on my life, so I am very lucky. But everyone should have that quality of care, it shouldn't be down to luck or where you live.

    There is a very good book called "The Pain Chronicles" by Melanie Thurmstorm (it was on Amazon), who suffers from chronic pain. She spent a lot of time researching the subject and interviewing patients and doctors in pain clinics in the US. She makes the point that sometimes if a patient really likes a doctor the patient won't tell the doctor if a particular drug or treatment isn't working because they don't want to disappoint them. I've done that myself!

    As for describing pain in numerical scales ranging from 1-10 - well, don't get me started! I'm numerically dyslexic & I "see" my pain in colours & shapes (I have something called synaesthesia where the senses get a bit mixed up) as much as I feel it as something physical. The best doctors have been the ones who have understood when I've said I'd like to be able to take my own head off, and have asked me to draw a picture of my pain rather than put a score to it. Keep meaning to write a blog on that topic!

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