Newly (but barely) diagnosed

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SueJones
SueJones Member Posts: 4
edited 5. Mar 2014, 13:40 in Living with Arthritis archive
My GP has told me I have arthritis but nothing else really. I have had increasing knee problems for about 15 years and just accepted this as arthritis that would eventually need attention. Up until six months ago I had no other symptoms. I was not feeling 'right' for several months last year. I was lethargic and just felt very ill but all very non specific. I don't know if there is a connection but since July 2013 my joint symptoms have got quickly and progressively much worse. I have significant pain and reduced strength and movement in my right thumb, My knees are much more painful with increasingly limited range of movement. I get intense burning sensations in many joints including my right ankle, thumb, and elbows. My shoulders and elbows feel 'tired' and feel very weak. I keep dropping things (due to lack of strength) When I sleep on my right side my shoulder hurts and on my left side it's my hip. I have significant crepitus in my knees and thumb. I have seen my GP and told him that I accept the pain in my knees is arthritis but I cannot understand how one can have no other joint symptoms and then, six months later, feel weaknes, pain and reduced movement in pretty much all joints. He examined my thumb and picked up on the crepitus and than looked at me and said, "you have arthritis" and that was it. He has prescribed Gabapentin which I won't take as I am concerned about side effects. I did have an injection in my thumb joint but that did not help. He has not referred me and I feel I can't waste his time asking what I feel are stupid questions. Any advise or support would be most welcome as I am feeling very low and tearful at the moment.

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  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hi & welcome,

    I'm so sorry ure going thru such a tough time at the moment!!

    U have me a little confused, which isn't at all wot ul want to hear, sorry!!

    Generally if a GP doesn't refer you to a Rheumatologist it means uve got Osteo Arthritis (OA) but the rapid onset of symptoms with stiffness, multiple joints & fatigue would suggest an autoimmune type ... Hence I'm confused!!

    If he said it's OA then I'm afraid treatment is with pain management & gentle exercise. If it's not then you need a referral asap as treatments needs starting & they'll need to start narrowing down which type you have.

    I hope a more knowledgeable member will be along to help you shortly, the week ends can be quieter unfortunately though.

    Try not to get too down hearted. They're a great bunch on here, they'll help you loads.

    In the mean time I'd suggest you find & read 'The Spoon Theory' & ' There's a Gorilla in my House'. Very enlightening :D

    (((Hugs)))

    Xxx xxX
    Healing Hugs
    Debbie.x
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Sue and a warm welcome from me..
    This arthritis is so complex has I found out when I joined this forum, you must ask to be referred to a Rheumy..they will do all the test to see what type of arthritis you have
    You should have had Xrays and maybe MRI scans by now a lot of us have had probs getting our GPs to take us seriously so you go back with a list of questions and make sure they listen..good luck
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, it's nice to meet you but I am so sorry you have had to find us. Arthritis comes in two forms, osteo and auto-immune. The former is poorly described as the 'wear and tear' behind its cause, the latter is far more complex and it has around 200 variations. GPs deal with the former and rheumatologists the latter. It is feasible to begin with one and then develop the other, I have psoriatic arthritis (PsA) and that in turn has led to OA in a number of joints but it's more unusual to do it the other way round. I think you need some further investigations on this because your tiredness etc. is more redolent to me of an auto-immune than osteo.

    I can't type much more because I have a broken left upper humerus and am flying on 'one wing' but please remember this: GPs know a little about a lot whereas rheumatologists know a lot about a little. At the very least your GP should refer you so please ask. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi
    Welcome to the forum
    Why will he not refer you? Keep insisting you want a referral
    Even with OA you should get a referral and then fair enough if it is OA there isn't a lot that can be done except, GP, Pain Clinic, Pain dullers/killers, and self management.
    I have OA in both hips, lower spine, ankle and neck but I got a referral for a diagnosis.
    I was lucky that at that time I had a GP who would do anything to get you out of the surgery. eg write a prescription {that I didn't want or take} or in this case when I asked for a referral after him telling me there was nothing wrong....he was quite happy. I got a diagnosis and needless to say haven't got the same GP now :lol: Was taught self management, go to a pain clinic etc.
    So stick to your guns and get a referral.
    Keep in touch and let us know what happens
    Love
    Hileena :D
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Hello Sue and welcome from me too.

    I agree with the others. When arthritis presents in the big joints first it's usually OA but not necessarily. Even a blood test wouldn't necessarily tell you if you had an auto-immune form such as RA or PsA because some auto-immune forms (PsA is one) these test negative for the rheumatoid factor. However, you do seem to have many classic symptoms and not all GPs are clued up about this. Do you have any relatives with auto-immune diseases? There is a hereditary factor though no-one's too sure just yet what it is. Most auto-immune diseases seem to be a combination of genes, environment and luck.

    Why not read up on the different forms of arthritis? (http://www.arthritiscare.org.uk/PublicationsandResources/Listedbysubject) Maybe have a word with our Helpline people. Then, armed with your new knowledge, you might find it easier to go back to your GP and ask to have this looked at in more depth. Meanwhile also keep a diary of symptoms and take photos of any swelling/inflammation.

    (And also keep in touch with us :) )
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi from me too Sue;

    Well, I certainly can relate to "feeling low and tearful" Have some hugs (((()))). Even the cyber kind seem to help.

    It sounds like you at least deserve some answers from your medical professionals, maybe with an xray or two and some bloodwork since you are feeling so unwell? Feeling tired and vaguely unwell should prompt bloodwork and/or referral, especially since your symptoms have continued for 6 months +. While you can't do much about OA, if it is an inflammatory type of arthritis then you need treatment sooner, rather than later.

    Unfortunately, we often end up advocating for ourselves when it comes to sorting these matters out. Please, if you are not happy with the results of your doctor's "diagnosis" either go back and discuss things again, or seek a second opinion. If you do have signs of an inflammatory arthritis, you need a prompt referral to a rheumatologist. I would suggest keeping a diary of how you are feeling and which joints are painful. A pattern might show up that will help your doctors figure things out for you.

    I'm sorry, I don't mean to sound pushy, it's just that I slipped through the cracks in our medical system here in Canada and ended up mis-diagnosed for a very long time. It turned out after quite a few years that I did have an inflammatory sort of arthritis (PsA & spondylitis). If I had received treatment sooner, I would likely have had a better outcome. I regularly hear of others that go through similar and we all deserve better than this, and that involves objective testing to confirm a doctor's suspicions, not just an off the cuff, vague diagnosis.

    Best wishes, I hope you get better answers to your arthritis problems.
    Anna
  • SueJones
    SueJones Member Posts: 4
    edited 30. Nov -1, 00:00
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    lots of supportive emails - thanks.

    The responses have helped me decide what to do next. I am seeking a second opinion as soon as I can get an appointment. I am more concerned about getting a diagnosis, regardless of what that diagnosis might be, than not knowing. So, off to the surgery tomorrow and see what I can organise. I did read, as suggested, the Gorilla story. It made me smile and I could really relate to it. For the first time in several weeks I feel I can make some progress.

    Watch this space !
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi
    I'm so pleased you are going to see the GP again.
    Once you have a diagnosis you have something to hang your hat on if you know what I mean.
    Once you get a name to it then you can start managing it and coping rather than being left hanging and wondering :D
    One other thing that has just occurred to me. EVERYONE you see, consultant/rheumy etc ask to be copied into the letters they send to your GP. That's another way to keep up with what they think.
    OK we don't do "medic speak" but it does help and if you get a copy you know your GP will have the original an should be doing something soon and if they don't then you can do a bit of chasing.
    I get copy letters from the consultant {orthopaedic}, from the back specialist {whatever his title is}, physio {although he doest write many letters,} and from the pain clinic.
    Good luck
    Looking forward to hearing what comes of this appointment]

    Love
    Hileena
    .
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Good for you...many on here have had a battle to find out what is wrong and get the right treatment...I do wish you well x
    Love
    Barbara
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
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    Let us know what the G.P says about your diagnosis, that will be the first step up the ladder, the next step will be seeing a consultant. Hope you get sorted soon so you can have answers at last.
  • SueJones
    SueJones Member Posts: 4
    edited 30. Nov -1, 00:00
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    It has been some weeks since I first posted a message on the board. I had such nice supportive comments that I thought I would write an update. Since my last message I have a new GP and have had X Rays and bloods done. I saw the GP today and all my bloods were OK other than my Thyroid levels which are a bit low and I will have a re-test next week. I was tested for rheumatoid factor and this was also negative. The X Rays show arthritis in all joints X rayed (Knees, hip, Thumb).

    This results caused me to get a bit emotional because I felt (probably quite incorrectly) that if the Rheumatoid factor was negative then it would just seem as if I was inventing my pain, lethargy, muscle weakness and discomfort. The GP was quite uncomfortable with my tears and is going to refer me on to a consultant.

    So, not quite sure how I feel today really. It's not that I want some grand fancy name for what ails me. It's much more that I need a diagnosis to reassure me that I am not imagining how rough I feel and also that I receive any treatment that may be available and can then move on with my life.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Thanks for the update. It's good that the new GP has had tests done.

    You're not imagining anything. You certainly have OA and, just because you have a negative rheumatoid factor, that doesn't rule out some forms of inflammatory arthritis also. I hope the rheumatologist (I presume the consultant is a rheumatologist?) will get to the bottom of things.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I have a sero-negative form of arthritis (psoriatic arthritis) plus OA - of the two I prefer the OA because it is far more honest in how it presents itself. People think there are only two kinds of arthritis, OA and RA, which is not true. There is OA and around 200 kinds of auto-immune arthritis - this is why an accurate diagnosis can take a while. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    :) Hi Sue
    Keep in touch with us please.
    You aren't imagining things.....a lot of us worry that they will think we are but not true
    I've been skimming over the rest of your posts and replies.....and one thing occurred to me There is no such thing as a stupid question!!!! :wink:
    I'm not quite clear {nothing unusual in that :lol: } were you referred to a hospital and did you see a rheumy?
    Are you getting copy letters because they should give you an idea of what they think.? Not always what they tell us :roll:
    Don't be surprised if you feel emotional.......even if you know what you have sometime hearing someone else saying it aloud makes you {me} emotional :wink:
    Love
    Hileena