Hello - Newly Diagnosed and Unconvinced

GreenTurtle
GreenTurtle Member Posts: 5
edited 17. Feb 2020, 12:44 in Say hello
Hello,
I am new to the forum
I have been diagnosed with RA, however I remain unconvinced and am hoping some of you might be able to help. I have general pain in my hands and feet (not toes and fingers) but essentailly ended up in the system due to bouts of severe crippling pain.

My primary problem is severe, incapaciting bouts of pain in a joint which comes on swiftly, going from noticing it is sore to excruciating agony withn 6 hours, generally lasts for 12-24 hours and then the severe pain disappears as quickly as it started and the joint is back to normal within 6 hours, with only a bruised feeling in the affected joint remaining.

The pain is incredible and I can only liken it to spinal nerve pain. If it is a knee or shoulder, the limb stops working for the intense pain period and is like a dead weight. There is no comfortable position that alleviates the severe pain, painkillers (including naproxen and tramadol) don't seem to work, hot, cold, rubs and gels, and even the TENS doesn't help. There is only pain - no swelling, no redness, no heat and no shiny patches.

This has now happened on 6 different joints over the last 18 months. (knees, shoulders, elbows, wrist/hand)

Everything I have read on RA does not metnion any swiftly arriving and departing flares or pain episodes (without any other symptom) and I wondered if anyone could shed light on the speed of the arrival and departure of severe pain flares?
Many thanks

Comments

  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi GreenTurtle,

    Welcome to the forum. I am sorry to hear you have been suffering with intense flare ups, they sound excruciatingly painful.

    It seems that although you have received a diagnosis you still have many questions and concerns about your symptoms. If you haven’t already, I recommend talking to your rheumatologist about your symptoms. RA can present differently in different people and it is understandable to have doubts when one does not have the classical symptoms. Your rheumatologist may help address some of your questions and, in any case, may be able to help with pain management for the flare ups.

    We cannot provide medical advice on the forum but our members can certainly share their experiences, and perhaps some have experienced similar flare ups.

    In the meantime, I have provided a link to some information from our website on techniques for pain management. Different things work for different people but hopefully some of the techniques on here will help you get through the intense flare ups.

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Please join in any of the forums where you feel comfortable and check back in to let us know how you are getting on.

    Best Wishes,
    Alice
  • GreenTurtle
    GreenTurtle Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi Alice,
    Many thanks for your response.
    Don't worry, I am not looking for any medical advice, just looking for other people who might experience these swiftly arriving and departing pain flares.
    Many thanks
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    That sounds very painful, I am sorry. Arthritis is a far more complicated business than Joe Public thinks, something you are beginning to find out.

    There are around three hundred auto-imune inflammatory conditions so diagnosis can be difficult. In my case it took nine years, in the end the correct label (psoriatic, tho still written up as RA) changed nothing as I was already taking the usual meds. Mine did not begin as it should or where it should but, having been born with eczema (auto-immune inflammatory) and developed asthma aged seven (another auto-immune inflammatory), its arrival was not the shock it could have been. The diagnosis of OA (osteoarthritis) made up for that! :lol: What helped the rheumatologist initially was my high inflammatory markersnin my blood but if you are not presenting with that it further muddies the already cloudy waters.

    I am currently experiencing sharp pains through my left elbow which I suspect is my psoriatic arthritis playing up. It does help that I have not been pain-free in the majority of my major joints for over ten years, more of the same becomes no big deal. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    Hello GreenTurtle and welcome from me too.

    I hope you'll forgive me if I say this is a bit unusual for us. We're accustomed to people saying they think they have an autoimmune form of arthritis but the rheumatologist disagrees. It's not often we get things the other way round.

    I've had RA for a very long time. No, your early symptoms don't coincide with mine but we find so many variations on here. Mine probably started when I had 'rheumatic fever' aged 11. I was then fine until 15 when I was diagnosed with Stills Disease (They'd probably call it JIA now.) Now it's just RA.

    Certainly, symptoms can come and go in the early years. Mine never went away so rapidly but perhaps you got lucky and were caught early. I'm guessing you were referred to rheumatology after your GP did a blood test for rheumatoid factor. A low RF doesn't necessarily indicate no autoimmune arthritis. There are many forms and some give a negative reading. But then your rheumatologist presumably did other tests. What I do find odd is that your rheumattologist diagnosed RA but you don't mention being put on Disease Modifying Anti Rheumatic Drugs (DMARDS). Are you having preliminary tests such as a chest x-ray first? I'm not at all surprised that naproxen (an anti-inflammatory), tramadol and the rest don't work. They didn't for me either for the first several, very rough, years until modern DMARDS became available. They are only a means of mitigating the pain and, to some extent with naproxen, the inflammation. They don't hold back the disease.

    I presume your rheumatologist is aware that you have had spinal nerve pain either now or in the past as that might be useful re diagnosis. As for the affected limbs stopping working – do you mean that literally? ie do you become temporarily paralysed? Or is it a muscular thing? Or just pain making it very difficult to move?

    When I'm in doubt after seeing a consultant of one kind or another, I make an appointment with my GP to seek clarification. He / she will have been sent the rheumatologist's report and may well be able to shed some light on how the diagnosis was made. I've always found it helpful to do this.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • GreenTurtle
    GreenTurtle Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi DreamDaisy and Sticky Wicket,
    Thanks you for sharing your experiences.

    SW - I too find it odd that I have not been put on DMARDS yet! (Aside: I have very small patches of Psoriasis which I have always had and never worried about as my poor mum has horrendous psoriasis all over her body, so my 10p sized knee patches never seemed an issue - but of course I am now aware of the potential inflammatory link now.)
    My spinal nerve pain experience is, I am assured, unconnected to the joint issues or RA. About 5 years ago, one of my spinal discs exploded, which caused the spinal nerve pain and resulted in disc replacement in my neck - hence I know what that one feels like. All doctors seem to agree that the way in which my disc "exploded" was an unlucky accident due to "faulty product" ( as I am always telling my mum!) as spinal discs don;t normally "explode" - they normally get little leaks in them ( It was explained to me in a good way - I had a tyre blow out rather than the normal puncture!)
    In many ways, I was actually very lucky with the spine as, although I was in considerable pain for a few months, when I got my MRI, my replacement surgery was pretty much instant and the fix was also immediate and I went from gibbering, drooling wreck laying on the floor unable to move to bouncing on the bed 10 mins after surgery ( which was a really bad idea by the way - popping stitches in a throat wound makes for gory display that even freaked out my husband!!!). I know there are so many people who have the "little leaks" from "slipped discs" that live with spinal nerve pain for years on end and I just can't imagine how they tolerate that.

    Just trying to feel my way through this new chapter and greatly appreciate everyones thoughts and experiences as it is helping me to formulate the questions I want to ask.
  • GreenTurtle
    GreenTurtle Member Posts: 5
    edited 30. Nov -1, 00:00
    sorry - sticky wicket, meant to say that I would not say the limb is totally paralysed as i can still feel parts of it - but some muscles seem to go dead and i can;t make them move. For instance - when my shoulder joint went recently, I could not move my arm at all from shoulder to elbow and so could not lift arm up and it was just hanging by my side - but I had perfectly normal operation of hand, wrist and fingers and if I lifted my hand onto the computer keyboard (using my other arm), I could type away no problem. But as I say, this lasted less than 12 hours and disappereaed when the sharp severe pain disappeared. Wierd, right?!?!