Confused

kohai
kohai Member Posts: 11
edited 28. Jul 2013, 13:15 in Living with Arthritis archive
(Firstly, apologies for the typo's - hand problems)

Back in 98' I worked in a large factory who had been sued several times by employees with hand complaints, so they took on their own doctor and physio and encouraged anyone with hand issues to get it checked.
I went to see them as I was getting severe pain in my knuckles on both hands.
Long story short I ended up seeing their doctor, their physio, my own doctor, the nhs physio and the rheumatologist. A whole bunch of different tests.
I was told I had RA in my hands. Oh wow I remember the frustration and throwing dinner plates when I couldn't even manage to cut my own dinner
( I lived alone at this point so had no help).

That thankfully after a few years did calm down, I had a few mild flare ups since but nothing as bad as when I was first diagnosed.

Over the last few years I've been suffering with shoulder impingement in both shoulders and tennis elbow in both arms - as if that wasn't enough I was told earlier last week I have RA in both thumbs and my index finger.

The doctor has said its quite possible it'll go through my knuckles again.

Is it normal if someone has had RA in their knuckles before for a doctor to poke and prod then say 'yes thats what it is' ?

The pain I get in my thumbs and index finger (if i remember correctly) is the same pain as that back in 98', but I'm so sick of hospitals, mri's, xrays and waiting lists I could cry honestly.

I have to use tin coffee cups as i can't hold a normal one, i can't cut my own food, grip toothbrushes - i feel as if i'm going through the same frustrations and emotional turmoil i had back in 98'. My husband does help as much as he can, but he can't/doesn't feel what i feel.

Comments

  • stickywicket
    stickywicket Member Posts: 26,934
    edited 30. Nov -1, 00:00
    Hello. I don't think we've met but I have R.A. Too. It started in my fingers, then ankles and then decided to move in permanently :roll:

    I think we all get sick of hospitals, docs and the whole medical kaboodle but at least we have it, it's free and we certainly need it.

    The meds for RA (which have you been prescribed? Mine's methotrexate and hydroxychloroquine) won't necessarily take the pain away. For that you need painkillers. They don't take the pain away either :roll: but they do help when used carefully.

    I find docs not as hands-on these days as they used to be but, yes, they used to poke and prod mine. They're checking for nodules, inflammation etc.

    You will find lots of things to help with eating, drinking and many other daily activities in any Disability Aids shop. Two-handled cups might help. Electric toothbrushes are a must and you'll find many ideas of how to deal with everyday activities on the 'Simple Ideas...' thread at the top of this page. Have you asked an Occupational Therapist for advice? They can be very helpful.

    A good husband is a treasure when you have RA but don't tell Mr SW I said that :wink: He can't feel your pain. Let's face it, if he could he wouldn't be much help. Pain is very isolating which is why this forum is so useful. We all get it – literally. So please do use us as a sounding board but do keep taking the tablets as well :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I don't have RA but I do have PsA plus OA. Gripping things is challenging, here are some ideas which might help.

    I have an electric toothbrush, this has a much wider handle thanks to the battery, plus a 'rubberised' grip section so holding that is straightforward - and two hands can also be used.

    I have changed all my kitchen utensils to the 'Good Grips' range, again they have large, songy rubbery handles and even with wet hands I can hold on to them. They also do a fork, spoon and kinfe.

    Over the years I have replaced my quality heavy stuff with lightweight, cheap stuff (which oddly enough works equally well!) This includes my iron, ironing board, clothes airers (I can't peg out). The next thing to go will be the duvet as it's now too heavy. If my husband complains then he can start making the bed. :wink:

    Chopping veg etc can be tricky - I have a wooden carving board with an inset of steel prongs. I slam the veg to be done on top of the prongs, that way I have two hands to use for the chopping. I also use a palm peeler.

    I have thirty nine affected joints, and thanks to the weather can currently feel all of them twaning away with more than a little enthusiasm. I shall stagger up to the local hostelry this afternoon for a pint which will, as usual, be held in both hands. So what? Even I draw the line at sipping good beer through a straw. :lol: You will find your way through this and develop your own coping mechanisms, there's a tips and hints thread at the top of this board which may be worth a read-through for more ideas. Tennis elbow is inflammatory condition, as is RA - what meds are you taking at the moment? DD
  • kohai
    kohai Member Posts: 11
    edited 30. Nov -1, 00:00
    Wow 39!

    Because of the shoulder impingement (which I'm on the surgery wating list for) and the tennis elbow I've been given the following
    (not taken all at once ;)

    Oramorph liquid
    Oramorph SR 30mg
    Tramadol 50mg
    paracetamol 500mg
    brufen
    Movelat cream
    brufen spray

    I haven't been given anything thus far for RA

    I started on tramadol but then got tennis elbow and it was just so painful i was given oramorph for extreme times.
    Because of the pain from the tennis elbow, i thought it had just travelled down my forearms to my hands. I asked the doc if the pain in my thumbs/index finger was from the tennis elbow, he said no, then started poking and prodding.

    I did get the electric toothbrush, I remembered from 98' to use foam tubing around pens so i could grip those, hubby got me an electric can opener (hhaha i made quite a mess using that)
    I can "just" about manage a fork between index finger and middle finger but i'm struggling a lot with knives.
  • stickywicket
    stickywicket Member Posts: 26,934
    edited 30. Nov -1, 00:00
    kohai wrote:
    Because of the shoulder impingement (which I'm on the surgery wating list for) and the tennis elbow I've been given the following
    (not taken all at once ;)

    Oramorph liquid
    Oramorph SR 30mg
    Tramadol 50mg
    paracetamol 500mg
    brufen
    Movelat cream
    brufen spray

    I haven't been given anything thus far for RA

    :shock: Blimey! I'm surprised you can wake up at all :lol: Those are serious meds but the one gaping hole is that you are not taking anything for the RA. It's a progressive disease and, unchecked, it will progress far more rapidly. Mine did because, at the time, there were no DMARDS (Disease Modifying Ant-Rheumatic Drugs) available but that shouldn't happen so easily now.

    Were you actually diagnosed by a rheumatologist, kohai, or just a GP? GPs shouldn't really diagnose RA – they should refer you to a rheumatologist – because they can't prescribe for RA. This could explain why you've not been given 'proper' meds for it but, if you've not seen a rheumatologist, you really should. I can't emphasise that enough.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Crikey, those are my go-to pain meds for when things are really tough. Surely they take you away from the pain rather than vice-versa?

    One thing that is omitted from your list is anything to actually tackle the RA. When I eventually saw a rheumatologist (five or six years in) I was given sulphasalazine and then, over the years, more meds have been added and altered. I am now on a triple therapy which is slowing the progression of the disease but cannot remediate the joint damage it's already caused. I second Sticky: if you haven't been referred to a rheumatologist then please ask to be. It will mean more hospital visits and tests but they are necessary, because if this is RA it must be 'headed off at the pass' so to speak. DD
  • kohai
    kohai Member Posts: 11
    edited 30. Nov -1, 00:00
    SW
    No, I'd told the doc I was diagnosed in 98' with RA in both hands (but that it was more both sets of finger knuckles - not thumbs), after looking over my notes from then he said that it had returned in my thumbs. He didn't send me to the rheumatologist this time. I told him I didn't think they'd be able to do much and that I'd use the movalat cream. (yeah stupid me thinking i knew best :cry: ) I guess at that moment i was just feeling like i was going through so much with my shoulders and arms i didn't want all the hospital trips and tests all over again.
    Because I don't live near the hospital and can't drive, taxi's get expensive. As i'm still working and its investigative i don't think i'm eligible for nhs transport back and forth.
    When i was diagnosed last time, i'd never heard of DMARDS only NSAIDS. I can't remember what meds i was given then.
  • barbara12
    barbara12 Member Posts: 21,274
    edited 30. Nov -1, 00:00
    Hello kohai
    And welc9ome to the forum
    Sorry I cant add to what the others have said but I do hope you get a proper diagnosis very soon.
    It is half the battle x
  • kohai
    kohai Member Posts: 11
    edited 30. Nov -1, 00:00
    The meds don't affect me like most people, oddly enough if i take them after 6pm they keep me awake all night, they don't make me drowsy at all. I also take them when required not 4 hr intervals. I've always been a workaholic and am trying to keep as active as i can without it disrupting my life too much. I use voice to text software as much as i can at work which helps, but the realisation i can't keep ignoring this, that it won't just go away, that i can't keep doing as much as i am is starting to sink in. I'm trying not to let the pain get the better of me. Sadly the doctors are somewhat reluctant to send patients for tests unless a last resort, and i guess he thinks the meds and cream i have now should help me cope with the thumb pain :cry:

    I don't know anyone where i live, i haven't been here long and my doctor is the only one (before posting here) that i've spoken too about it so in many ways i am totally naive.
  • stickywicket
    stickywicket Member Posts: 26,934
    edited 30. Nov -1, 00:00
    kohai wrote:
    . I also take them when required not 4 hr intervals.

    Have you been told to do this? Paracetamol alone can do severe damage if taken in doses exceeding 8 tabs in 24 hours let alone the big guns.

    I really think you need to see a rheumatologist no matter what it costs financially to get there. I don't want to appear to be scaremongering but it's just possible that the shoulder and elbow problemss have resulted from untreated R.A. They might not have but it should be checked out.
  • kohai
    kohai Member Posts: 11
    edited 30. Nov -1, 00:00
    kohai wrote:
    . I also take them when required not 4 hr intervals.

    Have you been told to do this? Paracetamol alone can do severe damage if taken in doses exceeding 8 tabs in 24 hours let alone the big guns.

    I really think you need to see a rheumatologist no matter what it costs financially to get there. I don't want to appear to be scaremongering but it's just possible that the shoulder and elbow problemss have resulted from untreated R.A. They might not have but it should be checked out.

    Yes, it works out as 8am, noon, 4pm, 8pm I don't take any more than 8 a day of anything.
    I'm supposed to see the doc in 3 weeks to let him know how I'm getting on with the sr oramorph, I'll talk to him then about getting my hands checked out properly.
    I'm guessing if the shoulders were in any way related to arthritis, all the mri's would have shown something
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I took your four hour phrase the other way, in that you would not take the meds unless needed. To read that you are taking that much so regularly somewhat worrying to me, especially as they are very strong meds. All dullers are limited in what they can achieve.

    I find it amazing that, despite a diagnosis by someone at some point of RA you are not seeing a rheumatologist or taking anything that will slow the progression of the disease. When my auto-immune arthritis began in 1997 my then GP dismissed it as something that would go away. It didn't and thanks to her negligence (and my still thinking that doctors knew best - I know better now!) I am in the pickle I am. You may be one of the luckier ones whose RA (if this is indeed what it is) may not be too bad and therefore not affecting life too much, but I do think you need to identify just what is going on. Strong pain meds are not the way to go because if it is RA then that is ignoring the root cause of the pain. DD
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi, I'm just going to chime in with the others.

    You definitely should seek a rheumatologist opinion. If you wait and make do with just pain killers the unchecked inflammation could be causing further joint damage.

    I listened to a GP who was adamant that I had nothing too serious, and then found out the hard way that I have a long-term, somewhat crippling joint disease. Damage to joints has been going along unchecked for several years. Please seek other opinions because it is you, not the docs, who will live with the consequences of one doctor getting it not-quite-right.

    Take care,
    Anna
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Hi. I too am going to encourage you to be assertive and ask - or even demand to see a rheumatologist. I understand that you are committed to your work and cannot drive but as others have said, unchecked RA could put a bigger dampener on your work and on your wallet re taxis than a trip to the hospital to see a consultant. My GP has said a few things that I now know to be a bit dubious in the past but he is just a generalist and he did take blood tests and felt very strongly that these indicated RA and referred me straight away. I now think I know more than him about RA and the drugs but he knows more about science and medicine so we work together quite well.

    I found that the excruciating pain in my shoulders, on occasion in my elbows and frequently in my wrists and knuckles as well as knees and ankles have now all been addressed by taking injectable Methotrexate. I have tried 2 other DMARDs without success but I only really suffer pain these days if I have to stop taking my Methotrexate for any reason. This means I can work again and am not waking all through the night in pain and don't need electric gadgets in the kitchen or elsewhere because, despite being a little bit wonky and not having a good grip I can do most things that I used to do with my hands now. So it really shouldn't be necessary to take this powerful concoction of pain meds that you are currently existing on. If your GP is prescribing you Oramorph then he or she can most certainly hurry up and refer you to a consultant rheumatologist! Mat x
  • kohai
    kohai Member Posts: 11
    edited 30. Nov -1, 00:00
    At the moment I'm in that frame of mind where I feel " feels like I'm always at the doctors' and that feeling of "always having 'something' wrong with me.

    I said to my doc recently 'Ever since I moved here I've had a breast lump, urgent surgery for stuck gall stones and now both shoulders, arms and thumbs' he replied 'Julie, its not the place, you're just getting old'

    Having these shoulder issues for almost 2.5 years the frustration of being in pain all the time and not being able to do the simplest of things like brushing my own hair (as I can't raise my arms above elbow height) just gets me down so much and now to have the possibility of RA in my hands again just makes me feel that the higher powers didn't think he had his foot on my head keeping me down enough, he had to add more to my worsening health.

    Sorry :( me having a rant, its a bad day today and I'm limited to sitting on the sofa, watching rubbish on tv having my dinner cut up for me. I'm just having a down day where I'm feeling sorry for myself :(

    I have a high tolerance to meds, the only effect the strong meds have on me is that they keep me awake all night if i take them after 6pm. Its like I have an intolerance for them and always have had. They don't affect my any other way like it would most people.
    I am always careful with my meds because I have a great fear of addiction but even the ones I'm on now aren't helping the level of pain i have.

    I managed to get an appointment to see my doctor end of this coming week not only to discuss pain / med management but to push to get a diagnosis on my thumbs.

    Thank you ALL so much for your help and advice, it has been really helpful and given me the push needed to actually ask for a diagnosis
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    I would be really hacked off if my GP spoke to me like that Julie! Okay we are all getting older, including our GPs, but his job is to endeavor to improve your quality of life however old you are. He's paid far too much to be sitting on his backside doling out obvious facts. He seems to me to be supremely insensitive. Sure OA affects everyone to a greater or lesser extent but that doesn't mean it's not his job to try and make it lesser still?

    And doling out these very powerful but ultimately non-modifying drugs to you without also showing compassion and referring you seems pretty cras from where I'm sitting (relatively comfortably unlike yourself - despite having active RA and taking a DMARD once a week by injection).

    So I will offer you lots of sympathy having been where you are now at one pre-diagnosis stage in my life and found it terribly depressing. Please hold your head up as high as possible when you see him next, meet his gaze and tell him you want and expect to be referred to a consultant rheumatologist forthwith.

    What I would have said to you at that moment when you pondered on why it was all going wrong was; "Julie you have just been terribly unlucky that's all". Fortunately my GP is exactly the same age as me (50) and when I went for my routine blood tests on the morning of my 50th birthday (so I could drink bubbly later on without my liver telling tales) and blamed my age for my hobbling entry he just said "hey wotchit you!". Mat x
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hi,

    I have psoriatic & osteo arthritis as well as fibromyalgia. I seem quite tolerant to pain & sleep meds too!! Oramorph kept me awake & as an insomniac I was desperate to sleep :( I don't know if having fm makes me less likely to get sleepy & help from pain/sleep meds?! :? Diazepam etc often don't work for me either ... I can be awake for a couple of days & they won't keep me asleep even for the allotted 4 hours. Its really annoying.

    I really hope you get to the bottom of wots going on :( (My youngest, she's 19 in December, has to assist me with showers etc for washing my hair because of my neck & shoulders... It's awful so I can relate to ure frustration) Hopefully they can get you on the right meds to help you asap!! ((((hugs)))) x
  • kohai
    kohai Member Posts: 11
    edited 30. Nov -1, 00:00
    DebbieT wrote:
    Hi,

    I have psoriatic & osteo arthritis as well as fibromyalgia. I seem quite tolerant to pain & sleep meds too!! Oramorph kept me awake & as an insomniac I was desperate to sleep :( I don't know if having fm makes me less likely to get sleepy & help from pain/sleep meds?! :? Diazepam etc often don't work for me either ... I can be awake for a couple of days & they won't keep me asleep even for the allotted 4 hours. Its really annoying.

    I really hope you get to the bottom of wots going on :( (My youngest, she's 19 in December, has to assist me with showers etc for washing my hair because of my neck & shoulders... It's awful so I can relate to ure frustration) Hopefully they can get you on the right meds to help you asap!! ((((hugs)))) x

    THANK YOU !! For such a long time I thought it was only me, I just thought I had an unusually strong tolerance which others found hard to believe.

    You seriously have my sympathies with your shoulder and neck problems, I can relate to that and how limiting it can be.
  • kohai
    kohai Member Posts: 11
    edited 30. Nov -1, 00:00
    Mat48 wrote:
    I would be really hacked off if my GP spoke to me like that Julie! Okay we are all getting older, including our GPs, but his job is to endeavor to improve your quality of life however old you are. He's paid far too much to be sitting on his backside doling out obvious facts. He seems to me to be supremely insensitive. Sure OA affects everyone to a greater or lesser extent but that doesn't mean it's not his job to try and make it lesser still?

    And doling out these very powerful but ultimately non-modifying drugs to you without also showing compassion and referring you seems pretty cras from where I'm sitting (relatively comfortably unlike yourself - despite having active RA and taking a DMARD once a week by injection).

    So I will offer you lots of sympathy having been where you are now at one pre-diagnosis stage in my life and found it terribly depressing. Please hold your head up as high as possible when you see him next, meet his gaze and tell him you want and expect to be referred to a consultant rheumatologist forthwith.

    What I would have said to you at that moment when you pondered on why it was all going wrong was; "Julie you have just been terribly unlucky that's all". Fortunately my GP is exactly the same age as me (50) and when I went for my routine blood tests on the morning of my 50th birthday (so I could drink bubbly later on without my liver telling tales) and blamed my age for my hobbling entry he just said "hey wotchit you!". Mat x

    Thank you so much Mat :)

    A week after he said that to me karma came back and got him. He has shoulder impingement in his right shoulder and tennis elbow in his left arm now !! Now thats karma ! but I bet he doesn't have to suffer the extensively long waiting list to get his fixed.

    He caught me off guard with his comment so I politely laughed it off, but later when I thought about it it was like a slap in the face.
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Aww ure welcome. It's surprising how knowing ure not alone, even with the little things, can make you feel a bit better :)

    Yes it's quite embarrassing as well as limiting & painful. I'm so lucky she's a total sweetheart & doesn't 'seem' to mind one bit :) x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I feel sure that fundamentally you are taking the wrong meds. You are seeing the wrong doctor from the possible aspect of RA and yes, as we age more and more goes wrong. It's part of the process of living, especially when one has passed forty. I agree that your GP was a tad tactless but no more. For an RA diagnosis you HAVE to see a rheumatologist so please ask for a referral. How tired are you feeling?

    Some do have an in-built tolerance to meds and if you are not seeing that much benefit from the big guns of pain relief I doubt that more can be done on that front. The human body is a weird and wonderful thing, but sometimes there's too much of the weird and not enough of the wonderful. DD

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