What's going on with me?

averyniceman
averyniceman Member Posts: 75
edited 27. Feb 2009, 17:44 in Living with Arthritis archive
I am finding what's going on with my body really hard to understand.

First I have swollen fingers. then the fingers clear up and I get a pain in my right knee. Then a pain in the other knee. Then a pain in both knees.

Oh -- and there were a few days of back pain too. And wrist pain. And foot pain. And ankle pain. They've all gone now -- hope they don't come back!

And I guess I should mention that there have been a few days when I have felt normal -- bliss.

Rheumy says he doesn't think it's arthritis -- he called it arthralgia. Even though my RF is high -- (he said 30 to 40 per cent of the population have high RF. )

But it's still bloody worrying and horrible.

Due to see him next Tuesday, so I guess things may get a bit clearer then.

Has anyone ever experienced anything like this?
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Comments

  • eckstardeluxe
    eckstardeluxe Member Posts: 1,192
    edited 30. Nov -1, 00:00
    Hi sorry I have OA so don't know much about it. I did google it though and found alot of info, here is a link about arthralgia from Wikipedia en.wikipedia.org/wiki/Arthralgia . Hope that helps.

    Alex
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    Hi sorry I have OA so don't know much about it. I did google it though and found alot of info, here is a link about arthralgia from Wikipedia en.wikipedia.org/wiki/Arthralgia . Hope that helps.

    Alex
    Thanks

    I guess by the lack of replies nobody's arthritis started like this.

    I guess what I am worried about is that high RF and this type of nasty joint pain -- but not swelling -- can develop into inflamatory arthritis.
  • lindah
    lindah Member Posts: 445
    edited 30. Nov -1, 00:00
    This rings all my bells but I have o/a.
    Mine started with the base of my thumbs.Sometimes it was as you describe the pain moves to different joints. My shoulders and elbows have decided to join in too just lately.
    Most days its my feet,hands ,back and hips with little exreas thrown in.
    Until I got on this site I thought I was alone in having these symptoms.(Not that I wish this on anyone)

    Linda
  • jackie1955
    jackie1955 Member Posts: 632
    edited 30. Nov -1, 00:00
    Hi, wondered how you were going on!

    I googled arthralgia as I'd not heard of that. I think my symptons were very similar to yours at the start, but I've had a lot of swelling in my fingers, and soft squashy swelling around my wrist, knees, elbows, ankles. Perhaps mine is inflammatory whereas you say yours isn't?

    Anyway, good luck with it all - its quite unbelievable how ones body can change isn't it?
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    jackie1955 wrote:


    its quite unbelievable how ones body can change isn't it?

    Too right!

    Thanks for the replies. Finger pain today -- but still no swelling, as far as I can see.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi

    Isn't arthralgia joint pain without inflammation? If that is right then why did your fingers swell up?

    I would suggest taking any photos if your fingers become swollen again and a list of questions to ask at your rheumy appointment on Tuesday.

    Look after yourself,
    Elna
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    elnafinn wrote:
    Hi

    Isn't arthralgia joint pain without inflammation? If that is right then why did your fingers swell up?

    I would suggest taking any photos if your fingers become swollen again and a list of questions to ask at your rheumy appointment on Tuesday.

    Look after yourself,
    Elna

    Good question.

    The GP saw they were swolen -- but they had gone down when I saw the Rheumy. And Rheumy could find no fluid anywhere.

    He was more interested in the fact that I had had a bad cold -- apparently arthralgia can be caused by a virus.

    Anyways -- it hasn't petered out. His letter to the Gp says he wouldn't "over interpret" the high RF in the absence of joint swelling or "sequentially increasing joint problems" Let's see if my joint problems are increasing sequentially enough on Tuesday!

    He said that if the pain hadn't gone away by the time of the next appointment, he would order some more tests.

    I believe there's some antibody -- anti-CCP -- which links arthralgia and high RF to RA -- does anyone know anything about this?

    I hope you don't all think I'm being over anxious -- I think it's important to know a bit of the science so you can better make sure you're getting the right service. Although you can't be one step ahead of the Rheumy, you can try to be just one step or so behind.
  • debatat
    debatat Member Posts: 659
    edited 30. Nov -1, 00:00
    elnafinn wrote:
    Hi

    Isn't arthralgia joint pain without inflammation? If that is right then why did your fingers swell up?

    I would suggest taking any photos if your fingers become swollen again and a list of questions to ask at your rheumy appointment on Tuesday.

    Look after yourself,
    Elna

    Good question.

    The GP saw they were swolen -- but they had gone down when I saw the Rheumy. And Rheumy could find no fluid anywhere.

    He was more interested in the fact that I had had a bad cold -- apparently arthralgia can be caused by a virus.

    Anyways -- it hasn't petered out. His letter to the Gp says he wouldn't "over interpret" the high RF in the absence of joint swelling or "sequentially increasing joint problems" Let's see if my joint problems are increasing sequentially enough on Tuesday!

    He said that if the pain hadn't gone away by the time of the next appointment, he would order some more tests.

    I believe there's some antibody -- anti-CCP -- which links arthralgia and high RF to RA -- does anyone know anything about this?

    I hope you don't all think I'm being over anxious -- I think it's important to know a bit of the science so you can better make sure you're getting the right service. Although you can't be one step ahead of the Rheumy, you can try to be just one step or so behind.

    Hi

    Arthralgia which is joint pain accompanied with or without swelling can have many causes. It is good that you are being monitered to see if it develops into something else. I would ask for copies of your blood tests, the esr and crp are inflammatory markers and if they are raised then it can indicate that the arthralgia is inflammatory. I am not an expert but do find that knowledge is power!!!! Hope your appt goes well on Tues

    Deb
  • colinone
    colinone Member Posts: 1,039
    edited 30. Nov -1, 00:00
    Hi
    RA can be a lot like that it tends to swap about the body one dat the wrist then another the knee then perhaps an ankle and then the other knee. And then the joys of the flair when they all go together. Take Care keep your cin up and i hope all goes well for your next appointment.
    Colin
  • lindalegs
    lindalegs Member Posts: 5,395
    edited 30. Nov -1, 00:00
    Only just seen your post otherwise would have replied before now.

    My RA rumbled about my body causing swelling in different joints which were painful and didn't last very long at all before moving on. I was pregnant at the time and the doc told me more or less I was being neurotic :shock: After the birth I had the most massive flare-up of my life and none of the joints in my body would work :shock: I'm not saying this will happen to you (well your chances are less being as though you're a man :wink: ) or anyone else as my RA is extremely aggressive - this is just my experience. All I want to say is you're doing the correct thing and seeing your GP and you're being monitored. If things get worse in the meantime go back to your GP for further help - don't ignore your body.

    Luv Legs :D
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    Thanks for all these replies.

    I want to ask what may be the most stupid question you've ever heard.

    I don't see swelling on any of my joints, but is it always obvious?

    Take my knees.

    My knees don't look bigger than normal. If I press them I can't see any liquid wobbling around. They're not red and angry. They just look like, well ... a pair of knees. (I like them like that!)

    So, does that show there's no fluid there?

    Or is there another test you have to do to find out?
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Sounds as if they're fluid free :) But I'm no expert on knees! :) love sue
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    I just found this on the web -- thought it would cheer everyone up:

    Ode to a Chronic Pain

    Let me be
    With my knee
    And see
    What my knee
    Has to say.
    Plenty, I suspect.

    Could it be knee-go?
    Could it be pride?
    A false sense of ego
    Takin' me for a ride?
    Then - on your knees, fool -
    For we are all One.
    Each one uniknee-que,
    And that's the Fun!

    As a diagnostic tool,
    My knee is way cool.
    It's my meter for stress,
    For emotional duress.
    It demands my attention.
    From pain I cannot hide -
    It forces my intention
    To pull the veils aside.

    Knee, you're my teacher,
    Who would have thought?
    So many things have you
    Me taught.
    So, bless you knee,
    What a joy to be free!
    I love you
    And know that's the key.......


    LiLi Townsend
  • magenta
    magenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
    I am finding what's going on with my body really hard to understand.

    First I have swollen fingers. then the fingers clear up and I get a pain in my right knee. Then a pain in the other knee. Then a pain in both knees.

    Oh -- and there were a few days of back pain too. And wrist pain. And foot pain. And ankle pain. They've all gone now -- hope they don't come back!

    And I guess I should mention that there have been a few days when I have felt normal -- bliss.

    Rheumy says he doesn't think it's arthritis -- he called it arthralgia. Even though my RF is high -- (he said 30 to 40 per cent of the population have high RF. )

    But it's still bloody worrying and horrible.

    Due to see him next Tuesday, so I guess things may get a bit clearer then.

    Has anyone ever experienced anything like this?

    Hello averyniceman!
    I get swollen fingers and all the other problems too. I have it all the time just now and they never really go away. I've been diagnosed with seronegative arthritis but I don't have raised ESR or CRP. They still don't really know for sure what it is. I also have OA in both sides of my jaw. It is very worrying, horrible and extremely frustrating!!!! Hope you get on ok on Tuesday,
    Magenta x
  • pussycat
    pussycat Member Posts: 36
    edited 30. Nov -1, 00:00
    averyniceman

    I have RA and initially I was getting nowhere as I kept reffering to a pain in my lower back, along with my other ailment's (swollen hand's, feet , wrist's, elbows and shoulder pain)
    It was a few year's later that I was reffered to a specialist and he told me the pain's that I believed were in my back were being caused by my hip's.

    Keep nagging your GP for a referal, your description is not so different to what I originally experienced. :)

    Can I ask if your joint's are worse when you have been busy doing manual activities?
    and do you feel tired after doing the smallest of task's?
    if yes to both I think that it could be RA.

    I always have fluid rather than a solid swelling, my joint's are only red and angry when I have a flare, but the fluid is alway's there, though sometimes in only small amount's.
    Good Luck on Tuesday. :)
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    pussycat wrote:
    averyniceman



    Can I ask if your joint's are worse when you have been busy doing manual activities?
    and do you feel tired after doing the smallest of task's?
    if yes to both I think that it could be RA.

    Good Luck on Tuesday. :)

    No -- they aren't worse after doing manual activities.

    And I don't feel at all tired -- In fact I feel great! . Apart from the joint pains and the worry!

    Thanks again for these interesting and helpful replies.

    Another silly (maybe) question -- is there anyone out there who has RA but does not have swelling?
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    I just got back fro the Rheumatologist.

    My joints are not swollen -- there is no arthritis that he can find.

    So he cannot make a diagnosis about why I am having so much joint pain.

    The interesting thing I learned is about the CCP antibody -- if anyone is in the process of being diagnosed this is, I think, good to know.

    If you have the CCP antibody in your blood then there is a very high probability that you will develop erosive RA. It's important for them to make the test so that they can treat you very aggressively at the first signs of inflammation.

    It's way more predictive of RA than RF.

    The Rheumy ordered the CCP test for me -- and told me to get in touch directly if there is a change in my symptoms. Or he'll see me in two months whatever.

    So I have mixed feelings. I'm relieved it's not inflammatory. I'm anxious about my CCP test results. I'm glad to be in the system. And I'm wondering what the next instalment of this adventure will be!
  • frogmorton
    frogmorton Member Posts: 29,773
    edited 30. Nov -1, 00:00
    Hi Averyniceman
    Mmmm... I don't know what to say, but I too am pleased you're in the system and that you're staying there and will be seen very soon again and that they're doing another test...am out of breath now!!! :roll:
    I think you are being taken very seriously and i hope you get some answers very soon. You must keep us up to date - you're very intriguing!!
    Overall I think a good start - I hope your diagnosis comes quicker than Magenta :(
    Take care
    Toni
    Ps has anyone asked if you work for the AA?
  • jackie1955
    jackie1955 Member Posts: 632
    edited 30. Nov -1, 00:00
    re: CCP AntibodyI'm still trying to come to terms with the different terms. I've seen RF Factor, CRP and ESR mentioned before, but not CCP Antibody. As I had bloods done at my first rheumy appointment is this something they will check, or do i have to request it?

    averyniceman: You sound quite upbeat, thats good. Keep in touch and let us know how you are.

    cheers, Jackie
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    frogmorton wrote:
    Hi Averyniceman
    Mmmm... you're very intriguing!!

    Yep -- I'm a medical mystery.
    frogmorton wrote:
    Mmmm... has anyone asked if you work for the AA?

    Are you suggesting I am an alchoholic?
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    jackie1955 wrote:
    re: CCP AntibodyI'm still trying to come to terms with the different terms. I've seen RF Factor, CRP and ESR mentioned before, but not CCP Antibody. As I had bloods done at my first rheumy appointment is this something they will check, or do i have to request it?

    I think it's worth asking about it -- even if you've been diagnosed with RA. If the test is positive, it will show that the arthritis is quite erosive, and they may treat it more aggresively in the early stages -- i.e. stronger DMARDS.

    And it is certainly worth pressing for a CCP antibody test if they are unsure about what's going on.


    The guy who I saw -- Patrick Keiley -- has written a paper for NICE about best practice for Rheumatologists -- and it goes into this CCP antibody a bit. You can find it here -- http://www.cot.co.uk/specialist/rheumatology/word/RAAdultsDraftNICEGuidelineConsultation.doc
    jackie1955 wrote:

    averyniceman: You sound quite upbeat, thats good. Keep in touch and let us know how you are.

    cheers, Jackie

    I scared really. But I'm still working and the pain's under control in a way and the spring is practically here.

    No one welcomes RA I guess -- and I'm glad that he didn't diagnose it. But I wish that this nightmare was over.

    Look after yourself, and stay 8)
  • masaka
    masaka Member Posts: 47
    edited 30. Nov -1, 00:00
    Hi, Mine started like that roaming round various joints in the hands, then knees and elbows and other places. The pain was crippling. My hands didn't seem to be inflamed although my knees were. First visit to the rheumatologist, when I was in remission diagnosis was possible inflamatory arthritis - with luck it would go away. I then flared up again and asked to be re-refered. They obviously saw something as it was a steriod injection in my rear and sulphalazine there after. I don't think they like to diagnose too quickly. But modern treatments use drugs more quickly - it avoids some of the deformities you used to get. Mind you I still have it quite mildly.

    Hope that helps,

    Teresa
  • magenta
    magenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
    I just got back fro the Rheumatologist.

    My joints are not swollen -- there is no arthritis that he can find.

    So he cannot make a diagnosis about why I am having so much joint pain.

    The interesting thing I learned is about the CCP antibody -- if anyone is in the process of being diagnosed this is, I think, good to know.

    If you have the CCP antibody in your blood then there is a very high probability that you will develop erosive RA. It's important for them to make the test so that they can treat you very aggressively at the first signs of inflammation.

    It's way more predictive of RA than RF.

    The Rheumy ordered the CCP test for me -- and told me to get in touch directly if there is a change in my symptoms. Or he'll see me in two months whatever.

    So I have mixed feelings. I'm relieved it's not inflammatory. I'm anxious about my CCP test results. I'm glad to be in the system. And I'm wondering what the next instalment of this adventure will be!

    Hiya!
    I just wanted you to know that I recently got the Anti-CCP test done. I'm awaiting results though, apparently the test can take anything from 6 to 8wks to come back. It's also more expensive than the standard one used for detecting RF so that might deter some drs asking for it. I've been told to expect it to come back negative as every other blood test does :shock: I'm like you, I want to know what the hell is wrong with me! I'll let you know if I ever get the CCP results,
    Magenta
  • tamnwill
    tamnwill Member Posts: 93
    edited 30. Nov -1, 00:00
    when my knee is super bad it hurts at the back of the knee and the swelling is felt behind, often going down the leg. I also get visible swelling above my knee all around, but never actually on my knee cap! :o) xx
    Energy is eternal delight.
    William Blake (1757-1827)

    Be careful about reading health books. You may die of a misprint.
    Mark Twain
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    I'm like you, I want to know what the hell is wrong with me! I'll let you know if I ever get the CCP results,
    Magenta

    We should make a club for the difficult to diagnose.

    Tell me Magenta -- what are you taking to control the pain?

    I was given Diclofenac and stomach protector by my GP.

    I wasn't getting any negative side effects, but I don't like the idea of what it can do to my stomach.

    I said to the Rheumy that, given he could see no inflamation, maybe I should cut the diclofenac and go on to pracetamol instead.

    He said he thought that was a good idea -- paracetamol is a lot safer than NSAIDs. He said it's very effective as long as you take 1000mg four times a day -- you need to keep the level high in your body.

    I wondered how you deal with it -- since your situation may be like mine.

    Oh and one last piece of info for you -- he said he thought that it was "unlikely" that my arthralgia would become inflamatory arthritis. Why? Because it's not effecting my small (i.e. finger or toe) joints.