Just diagnosed..

imogentonder
imogentonder Member Posts: 15
edited 11. May 2017, 13:35 in Living with Arthritis archive
Hello all, I am feeling pretty sure that I have artrhritis, I have really bad knee pain (much worse on right knee) and they have started to 'give way' sonetimes,same with pain inbetween shoulder and elbow, stiff thighs, random body pains. I cant get a blood test for 3 weeks.. do these symptoms sound familiar? Saw a physio first time today and she said my knee is swollen and warm. My mum has it and my grandma was in s wheelchsir from it so im a bit worried.. thanks all! Imogen xx


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Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Imogen

    Welcome to the forums where I'm sure you will get a lot of help and good advice from all the lovely people on here.

    You don't say if you have been to see your doctor, who would probably refer you for a blood test and start the diagnosis process: a 3 week wait is a little puzzling.

    Please do take a look around the Arthritis Care web site: a great starting point would be the section entitled "Do I Have Arthritis?", which you can find here:

    https://www.arthritiscare.org.uk/do-i-have-arthritis

    All best wishes
    Bryn
  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    moderator wrote:
    Hi Imogen

    Welcome to the forums where I'm sure you will get a lot of help and good advice from all the lovely people on here.

    You don't say if you have been to see your doctor, who would probably refer you for a blood test and start the diagnosis process: a 3 week wait is a little puzzling.

    Please do take a look around the Arthritis Care web site: a great starting point would be the section entitled "Do I Have Arthritis?", which you can find here:

    https://www.arthritiscare.org.uk/do-i-have-arthritis

    All best wishes
    Bryn

    Thanks so much Bryn.


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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, what kinds of arthritis did your relatives have? If you are going for blood tests then it sounds as though an auto-immune kind might be on the cards, these are known to run in families as they have a genetic component. I was born with an auto-immune issue, developed another aged seven and then the inflammatory arthritis began aged 37 so for me it's just more of the same. Mine began in my left knee with swelling and heat.

    Diagnosis may not be a straightforward event, some auto-immune conditions are rheumatoid factor positive and others are not - I have one of those, psoriatic so it took a little while for the medical penny to drop. Has your GP requested the tests? DD
  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, what kinds of arthritis did your relatives have? If you are going for blood tests then it sounds as though an auto-immune kind might be on the cards, these are known to run in families as they have a genetic component. I was born with an auto-immune issue, developed another aged seven and then the inflammatory arthritis began aged 37 so for me it's just more of the same. Mine began in my left knee with swelling and heat.

    Diagnosis may not be a straightforward event, some auto-immune conditions are rheumatoid factor positive and others are not - I have one of those, psoriatic so it took a little while for the medical penny to drop. Has your GP requested the tests? DD




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  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, what kinds of arthritis did your relatives have? If you are going for blood tests then it sounds as though an auto-immune kind might be on the cards, these are known to run in families as they have a genetic component. I was born with an auto-immune issue, developed another aged seven and then the inflammatory arthritis began aged 37 so for me it's just more of the same. Mine began in my left knee with swelling and heat.

    Diagnosis may not be a straightforward event, some auto-immune conditions are rheumatoid factor positive and others are not - I have one of those, psoriatic so it took a little while for the medical penny to drop. Has your GP requested the tests? DD

    Hi DD

    Thankyou so much for your sweet reply. I have managed to get the tests brought forward to next tuesday. My mum has wear and tear - i think that is osteoarthritis? And my grandma I think it was rheumatoid, she was in a wheelchair.how quickly did your symptoms happen? I had stiff legs for a while then knee startedhurting a bit a month or so ago, now it is extremely painful, keeps giving way and i have random pains all over, paricularly in my arms. If i do stuff like hoovering my wrist hurts too and i feel generally exhausted! How is it going for you? Xxx


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  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello and welcome from me, too, Imogen :)

    'Wear and tear' is the euphemism for osteo. The autoimmune types, such as rheumatoid very often have a genetic component and there is some feeling now that some types of osteo might too.

    GPs treat osteo (OA) and rheumatologists treat the other kinds. GPs can do a blood test which might be able to tell them is the patient needs referring to a rheumatologist. Unfortunately, that test doesn't give the whole story. Some forms of autoimmune arthritis give a negative result. It's complicated :roll:

    My RA started in my fingers and soon headed for my ankles too. I was lucky in that my diagnosis was a simple one.

    I'd say try not to panic if it's spreading. It can do this. But sometimes our pain comes from joints or muscles simply protesting at what we expect from them when we're not up to scratch. Also, don't worry about getting like your grandmother. Times have changed. Knowledge and treatments and surgery have changed. The future is much brighter now for anyone getting a diagnosis of any kind of arthritis.

    Please keep in touch and let's know the results of your blood test.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I apologise for not replying sooner but things are somewhat grim at the moment.

    My troubles began in April 1997 with a hot and swelling left knee. In 2003 my right knee joined the party then, gradually, what feels like everything else but isn't. :lol: Psoriatic arthritis was diagnosed in October 2006 and OA in April 2011. SOme joints have one or the other, others have both. My GP back in '97 was not a particularly good one, it is fair to say that nowadays GPs are far better at recognising the early signs of an auto-immune in inflammatory arthritis but are by no means qualified to diagnose.

    I have seen the progress that has been made over the past fifteen years in dealing with rheumatological matters, the faster the diagnosis the sooner one begins the meds and the better the outcome will be. Please let us know how you get on. DD
  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    Hello and welcome from me, too, Imogen :)

    'Wear and tear' is the euphemism for osteo. The autoimmune types, such as rheumatoid very often have a genetic component and there is some feeling now that some types of osteo might too.

    GPs treat osteo (OA) and rheumatologists treat the other kinds. GPs can do a blood test which might be able to tell them is the patient needs referring to a rheumatologist. Unfortunately, that test doesn't give the whole story. Some forms of autoimmune arthritis give a negative result. It's complicated :roll:

    My RA started in my fingers and soon headed for my ankles too. I was lucky in that my diagnosis was a simple one.

    I'd say try not to panic if it's spreading. It can do this. But sometimes our pain comes from joints or muscles simply protesting at what we expect from them when we're not up to scratch. Also, don't worry about getting like your grandmother. Times have changed. Knowledge and treatments and surgery have changed. The future is much brighter now for anyone getting a diagnosis of any kind of arthritis.

    Please keep in touch and let's know the results of your blood test.

    You are all so nice thankyou so much and for your help. I had the blood tests today privately in the end so will get the results tomorrow so hope to be a bit clearer. Thankyou very much again xxx



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  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    Thanks all, got so sick of waiting i paid for private doc blood tests, results showed high crp but only a bit (5.6) gp kind of was like ur tests are ok but symptoms weird as its the last 2 weeks things have suddenly got bad and getting worse . The good thing is hes referred me to rheumatologist on tues. Who knows, has anyone else had negative ccp and rheumatoid factor but still had pains all over etc? Im kind of ok if i dont walk/do anything but yesterday 7 slow mins on exercise bike with physio and walking the ten mins home put me into agony all eve! Guh! Xxx


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  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    Hi all, just checking in, I had more blood tests and an mri on my knee which showed lots of fluid and my esr and crp have gone up. I am now going for another mri of dpine to check for ankylosing spondulitis, not sure about that as my back only just started hurting but we will see. Thanks for all your lovely messages xxxx


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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am pleased that your GP has referred you to a rheumatologist because they are the ones who know the most about these things. You mentioned that your CRP was 5.6 but now higher, I wonder if the inflammation around the knee would account for that - even a bruise somewhere will raise levels. My hospital regard anything between 0 and 10 as being within the normal range but views vary from place to place. Is your knee hot to the touch? Mine always were, now they swell if I've overdone things due to my OA but without the heat.

    AS is another kind of inflammatory arthritis, there are around 300 kinds of auto-immune inflammatory conditions so narrowing down the precise cause of problems can be a lengthy process (and may be more about ruling things out rather than in). DD
  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    Thankyou DD! Im not so worries about the scores, they had gone up but i think they vary a lot anyway. Yes my knee is hot, 15mm of liquid in it. Just hope to get explanation soon! Thanks so much xxxx


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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I used to ice my knees using a bag of frozen peas (which were clearly labelled 'KNEE PEAS' so they wouldn't be eaten). This would ease the heat for a short while which helped matters. At their highest my figures were in the upper 160s but my current medication regime is keeping them to negligible levels, sometimes to the point they cannot be measured - this is how I know they are working.

    Whenever I had my knees aspirated a sample would be sent off to the path lab to be checked for infection, has this been done for you? DD
  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    I used to ice my knees using a bag of frozen peas (which were clearly labelled 'KNEE PEAS' so they wouldn't be eaten). This would ease the heat for a short while which helped matters. At their highest my figures were in the upper 160s but my current medication regime is keeping them to negligible levels, sometimes to the point they cannot be measured - this is how I know they are working.

    Whenever I had my knees aspirated a sample would be sent off to the path lab to be checked for infection, has this been done for you? DD


    Thanks Daisy im glad your medication is helping. I have ice pack but the knee isnt uncomfortably hot, just hot! The main problem is unbelievable tiredness, feeling just absolutely terrible, and the pains everywhere. Just want to know then i can get treated! Thanks again daisy xxx



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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Fatigue and tiredness is one of the recurring themes on here, we all feel and struggle with it no matter what flavour of arthritis affects us. It's also one of the hardest things for those around us to understand, we may look well but the heaviness in our body and joints remains. I find this to be especially so in the summer, I ensure I spend a little time outdoors for the Vitamin D so, despite my sunscreen, end up being lightly tanned which makes me look well. Those who know me, however, can tell how things are: if I'm wearing earrings I'm doing OK, if not I'm not. :wink: DD
  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    Ah ok, ive never felt this ill!would explain it.. does it just come and go randomly? X


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  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi imogentonder
    yes indeed fatigue is a symptom that many people with arthritis and other auto immune diseases live with all the time. We have created a section on the website all about it, here is a link
    https://www.arthritiscare.org.uk/living-with-arthritis/fatigue
    Best Wishes
    Sharon
  • imogentonder
    imogentonder Member Posts: 15
    edited 30. Nov -1, 00:00
    moderator wrote:
    Hi imogentonder
    yes indeed fatigue is a symptom that many people with arthritis and other auto immune diseases live with all the time. We have created a section on the website all about it, here is a link
    https://www.arthritiscare.org.uk/living-with-arthritis/fatigue
    Best Wishes
    Sharon
    Thankyou Sharon


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  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Ah ok, ive never felt this ill!would explain it.. does it just come and go randomly? X


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    Kind of. In my experience an RA flare does precisely that. It rocks up when it feels like it and hangs about like an unwanted guest usually until something's been done with my meds - either upping them, changing them or adding something to the mix. Apart from flares, my 'RA fatigue' is usually meds-related ie the day after I take methotrexate. At their worst, my RA flares are like walking through treacle while having flu. (Not great :wink: )

    My OA is more predictable. If I've been overdoing things it will let me know. Then, of course, I get much more tired just trying to do normal things as everything is harder.

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