FRUSTRATION!!

joej
joej Member Posts: 18
edited 19. Jul 2013, 17:05 in Living with Arthritis archive
Hi All

I'm not entirely sure whether I should have kept this in my original post (http://arthritiscareforum.org.uk/viewtopic.php?f=8&t=39124), but apologies if so...

...In a nutshell, I didn't exactly have much faith in my old rheumatologist, who thought I was 'over-sensitive to pain', so decided to change hospitals only to be met with the same brick wall.

I basically ache in quite a lot of places with my autoimmune inflammatory arthritis - fingers, wrists, ankles and especially my lower back. I've noticed the pain in my back is increasing and rising up and am also getting pains in the front of my torso also. I've always had dodgy knees so am unsure as to whether it is affecting them as well.

Anyway, I went to see my new rheumatologist yesterday and was basically told that, due to lack of sleep, my brain is possibly playing tricks on me and I'm not aching at all! He told me without any blood results indicating raised markers, there is very little he can do and told me to get more sleep and come back and see him in three months.

I'm the first to admit I don't get my 8 hours a night, but I seriously dispute his conclusion about my brain.

I'm now thinking of going private. My grandfather's previous job (he's 94 now!) provided him and the family with private healthcare, so think I want to go down this route as a last resort!

Does anyone have any advice on next steps I could take other than the above? If you do that would be great.

I find it frustrating and upsetting that the medical professionals I have seen seem to be dismissing me the way in which they are.

Many thanks

Joe

Comments

  • stickywicket
    stickywicket Member Posts: 27,100
    edited 30. Nov -1, 00:00
    That must all be very distressing, Joe, and stress itself does play a big part in pain. I think most of us with an auto-immune arthritis have been told at some point that our inflammation levels are low when we actually feel dreadful. I still vividly recall the day, over 30 years ago now, when I virtually crawled into my rheumatology appointment to be told brightly that according to my blood tests I was doing fine :shock:
    Frustrating as it is, the docs are not going to treat problems that are not indicated by the tests. (Am I right in thinking you said in an earlier post that you are on methotrexate though?) I've no idea whether or not your increased pain levels are due to a heightened perception of pain or referred pain or plain old pain but, if it were me, before spending money on a private consultation when two rheumatologists have said the same thing, I'd be wondering if they could be right and asking my GP for help with sleeping. The brain plays strange tricks on us and sleep deprivation has a lot to answer for. Have you read the 'brain fog' thread on this page and, in particular, Scattered's very interesting, informed contribution?

    It's very hurtful to feel one is being dismissed and not taken seriously. That in itself can make us focus more on the pain. Have you tried a Pain Clinic? Many report good results.
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi
    I must be so lucky I have a great rheumy team they have never ever dismissed my pain saying its all in my head
    I too have Spondlyo Arthropathy its in all my joints especially hands and feet
    My bloods are always normal
    I think they say its in our heads as they don't really understand the conditions we have but that's so frustrating
    My rheumy started me on a low dose of amitriptyline at night to help with the pain at night so I do sleep a little better but there is no improvement with pain
    I hope you have better response going down the private route
    Best wishes
    Maria
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Hello
    I just wanted to add that as frustrating as it must be to get that response twice it might be worth considering the relationship between pain and lack of sleep. As somebody who lives with a snoring bed hog I have done many experiments myself into the relationship, sadly always in the guinea pig role. When bed hog snoring has been at its worst I always wake (!) with significantly worse pain than when he's away when I usually wake feeling much less pain. It's like with most things I guess, I know I am more sensitive to stupid comments, I'm more irritable and more emotional after a significant period of lack of sleep so it's not surprising that I'm also more sensitive to my arthritic aches and pains. In my case the answer is either a bigger bed or smothering with a pillow (which usually seems most attractive at 3am). In your case it's probably worth talking it over with a GP and seeing where best to tackle it. If pain causes the lack if sleep then maybe better pain relief. If lack of sleep causes pain then maybe something to aid sleep? Certainly worth a go before you go private, at least that way you e exhausted all options and can keep the private option for if sleep isn't the cause of pain being so bad? I also think lack if sleep means not just your brain but your joints also don't relax fully so any muscle spasming doesn't subside as much as it would otherwise. I hope that helps. You have my sympathy in the Rheumy responses, I know I've been told things that were wrong in the past by one Rheumy but I just made sure I'd covered that idea when I saw the next one so there were grounds to dismiss his false diagnosis.
    LV
  • joej
    joej Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks very much All. Your comments are really helpful. I will book am appointment with my GP today and see what he recommends.

    The plus side about going private is that it's free to my family and I, but I've also been advised I should stick to the NHS route for full clarity on the condition.

    Thanks again though. As per my last post, you're all so helpful.

    Have a good day

    Joe
  • MrOptimist
    MrOptimist Member Posts: 175
    edited 30. Nov -1, 00:00
    Individual differences in pain sensitivity will always be a perplexing and challenging clinical problem. Because pain is highly subjective, it's important for doctors to trust what their patients tell them, but sadly in reality this doesn't always happen. Joe, if you don't agree with what your consultant is saying - tell him/her. Doctors are there to listen to you and help :). Time of course is always a problem for medics working within the NHS, and without a shadow of a doubt, more time will be available to listen to your concerns within the private sector. Whatever you decide, I wish you luck :)
  • joej
    joej Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks very much Mr Optimist.
  • Susiesoo
    Susiesoo Member Posts: 358
    edited 30. Nov -1, 00:00
    Hi Joe, nice to meet you. I may earn myself a black mark on here, but I thought I'd tell you of my experience. I worked for the NHS for many years and wholeheartedly support it. When I was first taken ill I had the chance to use our private medical insurance to see a consultant very quickly and I took it. He was very good, kind, understanding, professional, helpful etc. I saw him privately again for test results and diagnosis and was started on MTX. He suggested I then saw him at the NHS hospital as they have such a good rheumatology set-up with specialist nurses and telephone helpline. I did this and so far have been lucky enough to see the same consultant there. But what a difference. He is always stressed, rushed, manic, difficult to talk to and at one appointment was so rude and unpleasant I left feeling absolutely furious. I spoke to his private secretary who said I wasn't alone with this experience and I made my next appointment at the private hospital. Once again, he was professional etc, but would not give me chance to explain why I was at that hospital. I have since seen him on the NHS at a 9am apt, first of the day, and he was 20 mins late. Probably having a coffee, a nurse fumed. He was pleasant, polite and business-like on this occasion. All any of us would want.

    The outcome would have been the same and I really do appreciate how fortunate I am to have private cover. I wouldn't think twice about using it if you want the opportunity to talk to someone who has the time to listen. The NHS is wonderful, but sadly over-worked. The staff are only human.

    Do let us know what you decide and how you get on.

    Susie
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi Susie
    You are right there I was a nurse for 30yrs and no we don't have enough time as we are busy rushing round getting things done as quickly as we can as there are not enough staff! We always, well I always out my patients first so rarely got lunch breaks and always had a disturbed coffee break I did that for my patients not the NHS trust who seem to believe targets are more important than the patients
    There are more staff in carpetland as I call them than us on the shop floor. And who gets it in the neck when things go wrong us nurses saying its poor nursing care its the lack of staff that causes the poor care but does the government or health trusts say that no it's the nursing staffs fault
    It is such a blame culture you wouldn't believe!
    Yes there are poor nurses and doctors out there I have met a few in my time but the rest of us really try our hardest to do a good job in a difficult situation
    The bad ones get the publicity the good ones are never heard of!
    Joe
    I do get annoyed with some GPs and consultants they way people with arthritis are treated I'm really lucky I have a great GP practice and Rheumy team who do listen and seem to understand how I'm feeling don't know if its because at the time I was a nurse so they were on their best behaviour but I don't think so
    If you are unhappy with your consultant I would contact PALs at the hospital or ask to be referred to another one or if its your GP go through their complaints procedure or even change GPs
    We are vulnerable enough without been made to feel its all in our head or that it can't be bad as we are making out it is!
    Sorry rant over
    Stick to your guns don't let them brow beat you into thinking its all in your head it isn't!!
    Maria
  • joej
    joej Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks again All. This is such an enlightening forum!
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Joej;

    I reluctantly agree that it might be worth getting a private consultant opinion. It's not right that the public system is geared to overwork doctors to the point that patients are ill-treated. It's the same where I live too.

    If I remember rightly you take methotrexate I think? I'm really unsure why you are being treated so badly when you already have a diagnosed rheumatic disease and have been prescribed a DMARD for it. These are never prescribed lightly, so it really sounds like you need yet another rheum. opinion. I take a variety of meds for my similar-sounding condition: mtx, plaquenil, various pain meds, and recently a short course of low-dose prednisone. While starting the pred was rough, it now for the past few days is working wonders and I'm finally having some relief for the first time in two years. Has anyone offered this to you? Methotrexate alone is not enough for me and seeing some result from prednisone confirms for the doctor a) that my pain is not in my head b) that my disease is still active despite the methotrexate.
    All good information for the doctors. I know I can't stay on it for long but just to have a bit of relief for now is great. I went for a short walk yesterday for the first time since Dec 2012.

    I know rheums look at different things to measure disease activity and pain isn't foremost on their list, but they still should be considering your quality of life. It can be very destructive to a person to not be listened to and told "it's in your head". I can tell you I really suffer with this one. My years of physical training and fighting through the pain to reach a high level of fitness means training oneself to deal with pain, so I know I can handle a lot. In your last thread you sounded like you were previously very active, so I imagine you can handle a lot of pain too. I really doubt that you are over sensitive to pain. Be a pest to the doctors!! And don't let them discount your pain levels. Sorry it's so difficult for you right now.

    I did a quick internet search and in two minutes found medical reference to enthesitis-type arthritic inflammation associated with no abnormality in CRP or ESR in bloodwork. The rheum literature contains lots of evidence supporting this. A good rheum. will know this and not discount you based on no abnormalities in your blood. I have the same, by the way.

    I have a couple more suggestions for you if you don't have luck with another rheum so please post back and let us know how you make out.

    Best wishes, Anna

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