Sort of lost it!

Went to see my consultant on Friday, having brought the appointment

forward due to being in so much pain.

Two months before she had injected my knee and it made hardly any change,

then my doctor gave me the bottie injection about three weeks back and so far

still in pain.

I was explaining to her that I am unable to walk far and mornings see me crawling,

also my shoulder and upper arms are experiencing extreme pain so much so I am

unable to raise my arms up and away from my body, typing this is hard.

She felt my shoulders, looked at my knee then said the words that really peed me off.

"Let me see your hands".

I snapped back, "whoever I come to see all they are interested in are my hands!!

there is nothing WRONG with my hands, I have had that knuckle and that bump

for years, it is the rest of me that hurts"

She then proceeded to tick a chart on how my hands look (scream!!!)

I came home and found a knee support which has helped and I am off out to

buy one for my shoulder and elbow.

It seems to me one has to DIY.

Rant over, it is raining again here so hardly an uplifting day, again!!

Sorry all

17 Replies

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  • It's so infuriating when you have a medical appointment and the person you're seeing just doesn't listen to you so I can totally understand why you feel so angry. Did your consultant offer nothing new at all? DIY does seem to play a big role with this disease, which is one reason this site is so handy. I've never had to call the rheumy nurse yet as I have always found answers to my questions on here...coupled with a lovely dose of sympathy! I hope things ease for you soon. I'm enjoying a relaxing day in today thanks to the rain. Do you think we'll ever see a summer this year?

    Paula x

  • Paula,

    Just thinking same thought re summer....

  • OK to rant - we all understand the feeling of knocking our heads against a brick wall !!!!

    I think assessments are made by how the hands are progressing (for some reason).

    My only suggestions would be: have you seen your GP and asked him/her if there's anything else you can have to ease the pain? (i.e. tramadole or something they prescribe with codeine in them - cant remember what they are called) ... or: ice pack on the shoulders, or a hot and cold heat bag (from the chemists) or, and don't think you will like this suggestion prednisolone (steroid tablets). As you are crawling first thing in the morning, you may find stretching your legs out slowly before you get out of bed for a short while may help.

    18 months ago I had cronic sciatica in my right hip/leg/thigh/ankle and went to see my GP (I had seen my rheumy team but nothing was given or suggested by either the consultant or rheumy nurse) GP prescribed the codeine thingy's but they didn't help. Then rang my rheumy nurse and she suggested I went to see my GP again and asked him for tramadole. These helped quite a bit but not totally. Then went to my local pharmasist and he suggested I take paracetamol along with the tramadole. This also helped a bit. Eventually (about a year later) I saw a different rheumy nurse and she gave me the shot in the bum. This thankfully has helped me and so far I've had 3 of them and for a while each has helped me. (Right leg is not so bad now but of course sods law, the left one has started). I've also just had a rituximab infusion (2nd course) - (dont know if that is helping or if it's the steroid injections.

    So please believe me, I really do know what you are going through.

    Don't suffer in silence. Speak to whoever you can.

    Good luck,

    Judi xxx

  • What a shame and a shocking way to treat you. Sounds like your consultant has tunnel vision about the illness especially when you went about your knee. Big hug and hope you can get relief soon. x

  • Thanks for your support.

    I have sorted out a support stocking for my elbow and already feel the relief!

    Why was I not given this instead of having to cut up a stocking?

    Will go out later and buy a proper one.

    My doctor has put me on Matrifen patches and yes they help.

    I have often said, I would rather go to my vet any day, that is of course if he were

    allowed to treat me! ):)

  • That's awful. To be in such pain and then not be listened to. How frustrating.

    Hope you feel better soon. xx

  • Hi Gazelle, so sorry for you BUT I can totally sympathize, I was told I would have my appt with Rheumy brought forward but since I had appt with the Nurse they decided that would be good enough as I only had to wait 6 weeks more, that was yesterday. I COULD SCREAM TOO, she didn't even look; let alone touch my hands or anything else, she read the letter I sent to my GP and RA Cons and said well you have got to go on some kind of DMARD so what do you want to do? I had gone with the intention of starting back on MTX so it wasn't rocket science to initiate that, my sister asked a few questions about the meds otherwise that was that. all this could have been done on the phone, I didn't feel any better and infact probably more frustrated, she said my bloods were ok but this morning I have been called by my surgery as they want my bloods repeated as they are not happy with them! I agree withthe girls that Tramadol can really help but also paracetamol and ibruprofen and anything else you can lay your hands on, heat does help and a gentle massage, and be kind to yourself have a rant and rage and a laugh, funny how you can lose your sense of humour when your arms won't allow you to wipe the tears......dare I say 'Cheer up' sorry I need that too. hope the sun comes out for you soon. it's missing in Norfolk.

  • Love the comment re 'your arms won't allow you to wipe

    away the tears' how true!

    I did have to smile this morning when, unable to brush my hair

    with my left arm I managed to lift my right arm enough to do that side

    and said, "sod the other side" thank goodness I have never been vain

    or worried how I look.

    Just seen a glimmer of sun, waiting for some canvas photo paper to

    arrive so as I can have an enjoyable day printing off some photo's of

    my friends Afghan hounds.

  • I can only sympathise as a joint-pain sufferer myself (RA). I've found that Ibuprofen was an effective tablet for me for addressing the pain, and that a nice warm wheatbag (the kind you microwave) helped with specific joints that were more painful than the others.

    A warm bath, if you can manage one as part of your day, is also very helpful, as it will both ease the physical load on your joints as well as applying gentle heat.

    One thing to watch with ibuprofen is that it is an NSAID like etoricoxib, so continual use can have hypertensive effects (as in my case). if you're needing that level of pain relief all the time, you need to get your blood pressure checked regularly, as chronic hypertension has its own serious risks attached.

    Don't underestimate the power of a sympathetic ear, either. It may not ease the pain, but having someone listen can help all by itself. We're here :)

  • Dear Gazelle,

    I do sympathise with you. I am finding my feet to be the most painful parts of me at the moment, but when I mention that to the consultant, she doesn't even comment! You are right that they always want to look at your hands first! When they are doing your DAS, they only assess the joints in your upper limbs, hips and knees. Feet are not assessed at all! There must be a reason for this I suppose. I can't seem to find any shoes that are comfortable for work so that doesn't help! Hope you get some effective treatment soon x

  • Hi

    I can beat the fact your consultant does not even mention feet.

    When I asked my consultant about my feet she quickly said,

    " we don't do feet" !

    I asked, "well who does" she replied I should see my GP.

    I know what his answer will be, " see your consultant"!

    As for shoes I wear only one brand, a lace up in wide fitting.

    Not sure if one can mention brands so if I say, my shoes are

    not 'cold', maybe you will know what I mean. They last me forever

    and are so comfy.

  • Hi GazelleLOL,

    I was referred to an Orthotist because my feet and ankles were hurting so much I was struggling to walk properly - he told me "flat are crap" where shoes are concerned. Gave me a special insole which helps and exercises to help mobility in my ankles.

    Anyway reason for answering your question is that I posted the same question a few days ago (so too soon for me to confirm how good they are personally) - the answer I was given is "Hotters" shoe shop - they are available online if you google them or "flyflots" these again can be googled. Hope this helps

    Tina

  • Thanks for the tip - I couldn't work out the brand you meant, but the next reply has spelled it out for me! I will look them up as haven't heard of them!

  • sorry, was not sure if I could say the make.

    I wear the style 'Tone' in extra wide fit. They are

    not frumpy and are feather light, I have several pairs

    as I order another when the sales are on):)

  • Oh Gazelle i feel the same, my hands are the least of my problems, i can't walk, my knees look bizarre and my ankles are just blobs and still they say ".....now let me see your hands", it drives me nuts. The last time with the rheummy nurse, I couldn't turn my head due to problems with my neck and still they want to see my hands.

    I lift my right hand up to brush my hair as well, though mind you my hair is an awful mess, i got it cut all off about 9 months ago and i have not went back since so it has grown out in all sorts of ways but not down.

    My drug of choice at present is naproxen 500mg twice a day. It was changed recently from a lower strength to this one and i think it is as good as diclofenac (taken off that as the GP thinks it is too risky to take it long term)

    So understand what you mean..

  • Mads

    So sorry to hear you feel like I do, crap place to be at times

    isn't it?

    I am taking Naproxen (along with all the other****) it worked

    early on but at this moment I need much more help.

    My hair is weird now, as it hurts to have my home hairdresser

    spend too long on it now I just ask for a light trim and rub some

    mousse in so as to get some body when I dry it.

    Next time they ask to see my hands I may sit on them, that is

    of course if my arms will let do that):)

    Healing thoughts to you

  • Perhaps you should send your consultant a copy of the bits of the NICE guidance that says you should have access to physio and podiatrist.... or maybe write it over your hands nextbtime you see them? It's just nuts that people aren't offered stuff that could help. I Had to wait about 6 months for appointments, but at least I got them.

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