So confused.....🤯

Hi,

This is my first post so I apologise in advance if I ramble on.

I was diagnosed with sero positive RA last July and started on treatment in September.

I have swapped medication a few times due to side effects and am currently on leflunomide, which I started at the beginning of June.

My confusion is due to my very painful joints etc not being red, hot or swollen. The knuckles on my had do swell but are never hot or red.

Every time I have seen my RA nursing team I have questioned this and have never recieved a straight answer. 🤔 I am made to feel like I am in denial that I have RA, which I am not.

I saw a registrar due to the changes in the medication in February and questioned her as to whether something else is going on (another condition), along side the RA. She just said she didn't think there was. I explained that my joints and muscles etc weren't showing the signs of RA but were so very painful. I was told the medications can take up to a year to work.

My husband and I started to do some investigating to try and find some answers. My husband was convinced it was Fibromyalgia as both my brother and my mum suffered from it.

When I next saw the registrar in June I took my husband with me and we asked that same questions again - why was I in so much pain but none of my joints were swollen, red or hot? We also asked whether it could be Fibro as well as RA. She said it would take a very long time to diagnose Fibro, she just said to continue on the RA medication to see if things improve.

Last week I had a terrible week of pain, I really don't know how I managed to drag myself to work..... I had to sleep as soon as I got home. By Friday evening I couldn't take any more so phoned the out of hours doctor to ask for some pain relief. He was very dismissive and told me to keep taking the Naproxen, which had done nothing to stop the pain after 5 days of taking it! I felt like I was begging in the end 😔 I told him that I think the pain was down to something else on top of the RA as nothing was red, hot or swollen. I said I wondered if it could be Fribro and he said absolutely not - that you can't have both RA and Fibro 🤯. On several Facebook groups for RA people have both, hence my confusion..... In the end I told him that I had previously taken Tramadol after surgery on my shoulders years ago and it really helped with the pain, and I just asked him outright if he would prescribe some for me, which he reluctantly did.

After taking Tramadol, Naproxen and Paracetamol 5 days I felt so much better, not 100% but the pain was more of an ache which I can cope with.

Could anyone tell me if they also don't wave joint swelling, heat and redness in their joints, just pain? If so, is it RA or can it only be classed as RA with the above symptoms.

Also, can anyone confirm that you can have other conditions like Fibro when you have RA? If so, how long did it take for the Fibro to be diagnosed and how do you know whether it is RA or Fibro causing the pain?

So sorry for the long post, but I seem to be struggling to get the information I need and I don't want to start using 'Dr.Google'.

Thank you for taking the time to read my post, I'm keeping my fingers crossed that I will get some answers to my questions 🤞🏻

Comments

  • Chris_R
    Chris_R Moderator Posts: 360
    edited 30. Jul 2021, 17:39

    Hi @crazycatlady

    Welcome to the online community.What a lot you are going through with both Rhumatoid Arthritis and Fibromylagia

    i can understand your confusion with conflict in opinions such as you have had.Pain is very fatiguing aswell as being life changing.

    Hopefully these links may help you end the confusion

    Fibromyalgia | Causes, symptoms, treatment | Versus Arthritis

    Managing your pain | Treatments and self-help (versusarthritis.org)

    Rheumatoid arthritis | Causes, symptoms, treatments (versusarthritis.org)

    Joint care | Looking after your joints when you have arthritis (versusarthritis.org)

    Hope all these links help in some way and you talk to others on the forums,they all understand as everyone has a form of arthritis and understand what you are going through.

    Please keep in touch and let us know how you get on

    All the best Christine

  • frogmorton
    frogmorton Member Posts: 26,669

    Lots of people on here have both @TheCrazyCatLady

    I don't myself and my flares do usually accompany swollen 'glow in the dark' read joints. But the fatigue you describe is me through and through.

    You are so right to avoid Dr Google he always makes us fear the absolute worst.

    My experience here is usually arthritis first fibro later as far as diagnoses go.

    Keep posting we'll do our best to support you ((()))

    Love

    Toni xxx
  • stickywicket
    stickywicket Member Posts: 26,243

    It’s always worrying when we have, or think we have, an undiagnosed condition. Far easier to deal with something that has a name and, hopefully, a treatment plan.

    As I understand it, you have been diagnosed with RA and, as it was, helpfully, the more usual sero-positive type, the diagnosis is unlikely to be wrong. But you are concerned that, although you have a lot of pain, you don’t have all the symptoms.

    I started, 60 years ago, with the symptoms you expect – red, sore, swollen knuckles – but not everyone gets all the symptoms all the time – thank goodness! It hasn’t always been like that for me. Last time I saw my rheumatologist, pre-covid, he upped my methotrexate because, he said, my inflammatory levels had been high for a year. I felt pretty good but was happy to go along with the increased dosage because, so far, I’ve managed to avoid the greater excesses of RA (the internal organ damage) and I’ve no wish to go along that route.

    I don’t really understand why, if you accept you have RA, you feel you might also have fibro. Is it just the pain? Believe me, RA has flattened me at times with pain, fatigue or both. And, if you’ve had to have several changes of DMARDS in just a few months, probably none of them has been able to really get working on your disease. They can all take a few months.

    You’re A&E doc prescribed a cocktail of pain relief and, yes, that would help with the pain. But it won’t hold back the disease itself and it can be a dangerous route to go down as we become tolerant of the pain-relieving meds given and need higher doses / stronger meds.

    I’m a firm believer in DMARDS and exercises. They work well for me.

    The NRAS has a very comprehensive page on RA symptoms. Have a look here.

    https://nras.org.uk/information-support/information/ra-symptoms/

    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran