Rheumatoid arthritis and wallowing

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Ok, I haven’t written for a while. And you know what that means.  I can’t find words that don’t end in bad.

But that’s the reality of living with a painful illness, such as rheumatoid arthritis.  Lots of things end in bad.  We tell ourselves they aren’t ending, they are just evolving into something new.  Or those of us with ridiculously positive attitudes clinging to the positivity train as it rolls right over the top of us do.

Train: 1  Arthritic chick: 0

They’re not evolving. They ending. They have ended. Everything has ended.  I spent yesterday tracing the events that led to where I am today.  How many were my fault?  How many were my decisions – bad decisions – that led me here?  How many just ‘happened’.  How much could I have changed, had I done things differently?

A  lot.

This recent slide into WTF began when I saw my other rheumatologist.  When I tried to make an appointment with my original rheumatologist, and he shafted me onto someone else.

I was feeling rejected by my current rheumatologist.  She is sick of the sight of me because nothing is working, nothing has ever worked, so therefore it must be my fault. I must not have rheumatoid, it must be something else.

The obvious thought lurks there and makes me want to hate her.

She sees me and doesn’t schedule a next appointment.  Things are always left open ended. She wants me to stop making appointments.  So do I.  Until I break down because I can’t stand the pain and I need a prednisone burst.  Then I go see her and we have the same conversation over and over again.  She is sympathetic. She is sorry. But she doesn’t want to deal with me. She has no more ideas.  I knew there was an ‘end of the line’ but as far as I’m concerned there is still one more drug that I’m eligible for.

She doesn’t think it will help.  Do I?  I don’t know. The honest truth? I’m afraid to find out.  Half the drugs I’ve tried have made me worse. The other half may have helped some, but caused side effects that meant I had to stop them.  Liver issues, white cell count issues, kidney issues, eye issues and most fun of all, depression and mood change issues.  I’m not in my happy place right now.  I’m scared to throw another drug, an infusion that lasts for a month, on top of this bonfire of dysfunction.  If this one has depression as a side effect, it will last at least a month.  I’m depressed right now, all on my own. No chemical help required.

‘But what if this is the one?’  The seductive thought is still there, and it won’t leave me be.  So the crazy optimist is still in there, but I don’t know if she’ll win.

Anyway, the other rheumatologist.  My fourth rheumatologist.  I’ll call her Professor Dipshit.  She was of the ‘your bloodwork is fine so you must have fibromyalgia’ school of thought.  She spent 5 minutes with me before she came to that conclusion.

I don’t have any symptoms of fibromyalgia.  Fibromyalgia is a diagnosis of exclusion. If there is no other explanation for symptoms, you can diagnose fibro.  Inflammatory arthritis explains all my symptoms. Perfectly, in fact.

I have friends who DO have fibromyalgia.  I don’t suffer what they suffer.  Which puts this doctor firmly into the ‘if my magic drugs aren’t working, this patient has something wrong with her brain’ camp.  ‘And we’ll call it fibromyalgia’.

She said my body doesn’t process pain signals properly, and I feel more pain than other people. I said no, I have uncontrolled inflammatory arthritis. That causes a lot of pain.  She said my bloodwork showed that my arthritis was under control.

I looked her in the eye and said ‘You’re wrong.’

She didn’t enjoy that. I don’t think many people tell her that.  She’s a professor or rheumatology. She’s read all the studies.  That may well be, but I LIVE this shit every day.

I reminded her that I have ultrasounds showing active synovitis.  Active synovitis means my arthritis is NOT under control.  She ignored me.  She insisted I try Endep, regardless of the fact that that was the first drug I tried.  Not only is it a horrible drug it didn’t do a damn thing for my arthritis or my pain.

She decided to send me for x-rays and a bone scan.  I haven’t had those yet.  I will.  I haven’t had x-rays in years.  I don’t expect much damage. I agree with my first rheumy, in that I have mixed connective disease, an overlap of lupus and RA.  My arthritis is not erosive, more lupus-like. I have very little damage.  Although more recent ultrasounds do show that my shoulders and hips are degenerating.  I’m betting the x-rays won’t show much tho.

The bone scan will be interesting.  But still, kinda pointless. I have two previous ones showing inflammation.  Docs can still ignore those if those damn ESRs and CRPs are within the normal range.

I’ve read that 30% of patients with spondyloarthropy have completely negative bloodwork, including the acute phase reactants.  Which makes me less lupus-like and more spondylitis or psoriatic arthritis like.

I think doctors need to remember that all these classifications are man-made.  My body is not aware of which bits should be inflamed, and which bits should not, to achieve a text book diagnosis.  So I have a mish-mash, and so does everyone else!  These classifications are helpful for choosing a treatment that is more likely to be effective, based on previous experience of patients with similar symptoms and signs.  We’re well past that with me.  We’ve tried them all. There’s only one drug left.  Why all the drama, people?  Why all the confusion about my diagnosis?  Who gives a toss anymore?  Its synovitis. Whatever.  We’ve thrown everything at it.  Almost everything.

This obnoxious fourth rheumy upset me.  She basically said you’re all good. But you’re brain isn’t.

I do not have fibromyalgia.

I do not have a low pain tolerance.

A few months ago I burned my arm quite badly.  I burned it badly because I didn’t react to the pain quickly enough to move my arm.  I’m very used to pain, I block it. I don’t always react to it anymore.  The other day I put a shard of glass straight through my finger.  I just pulled it out and wrapped it up tight with cotton balls and sticky tape to stop the bleeding.  Oh, and whole lot of disinfectant.  But I didn’t consider it very painful.  I kept using the finger.  It was bulky though.

Someone with fibromyalgia should have found these stimuli excruciating.  I did not.  I do not have fibromyalgia.  I think you should be able to submit to a pain tolerance test before they can slap a diagnosis of fibro on you, in the absence of any fibro symptoms.

I even asked her how she explained all the degenerative arthritis. She said I must have had lots of injuries when I was young, or played lots of high impact sports, and those joints were degrading. I said that just isn’t true.  I didn’t play sport much when I was young.  I became a gym junkie when I was a young adult. I never played high impact sports or even did high impact aerobics.  I don’t remember any injuries, except to my elbow. Which was broken, but has never been mentioned in my x-rays reports.  One reason I don’t have a lot of faith in x-rays!

I told her a more plausible explanation is that my inflammatory arthritis has been uncontrolled for years.  And while it hasn’t eroded my bones yet, it has eroded my cartilage.  I’ve read this is what happens. First the cartilage, then the bones.  She had nothing to say about that.  I don’t think she dared say ‘But your bloodwork…’

I was totally respectful. Let’s face it, I’m a pushover.  Total door mat. I don’t stand up for myself and I don’t argue. But she was offensive so I respectfully disagreed.

And we started out badly, because I wanted to see my original rheumy.  I wanted his opinion, not hers.  He didn’t want to see me.  He rejected me also.  And THAT is where it all started to fall apart.

Rheumy no1 rejection. Rheumy no. 3 rejection.  Rheumy no. 4 rejection.    Rheumy no. 2 has retired.

I don’t handle rejection very well. In fact, not at all.  I have rejection issues.  Because my husband rejected me, and apparently I’m not over that yet.

So I’ve gone off on a tangent, and written about the Professor Dipship instead of what I started writing about.  I’ll have to write about that later, because this blog post is too long, and the kids are up.

4 COMMENTS

  1. My GP gave me a bit of priceless advice- ” when deling with your rheumy, remember he sees pain all day, dr my shoulders sore, my hips ache, my knee hurts, my pain score is 10. So make your self stand out, be memorable.”

    So I have decided next Rheumy appoint to wear just a g-sting and a sparkling set of nipple tassels!!!!

    Sometimes you need to SHOUT-LISTEN TOO ME.

    I wish I could come with you, we could wear matching nipples tassels and belt out a round of Chicago whilst we wait.

    Wishing you well.xxxxxx

    • Thank the gods for you, Sarah! You make me laugh when I would think that’s impossible. Thank you. I’d write more, but I’m off to check ebay to see if I can find a good, cheap set of nipple tassles…

  2. LOL! Too funny…I will take a pair too. Large. Thanks.

    I am currently being rejected by Rheumy #3. She said if my Vectra test came back good, she was going to basically wash her hands of me. Ummmm….ok. What about my friggin’ pain, lady? So I am trying to be proactive by doing the yoga and eating better. I do think the yoga is helping (when i do it, currently in a bit of a slump). Eating better helps a bit too, but with other things, not so much pain.

    Do you think there is anything to that theory that’s out there that people who experience pain for a long time, their brains get hardwired to continually feel it? I’m beginning to wonder about that. I just don’t know any more what to think.

    Please know that I would never reject you!!! I’m glad you are still posting here cuz it means that at least you have an outlet and know that you aren’t alone. You are loved and I will send positive thoughts. Hope today is better 🙂
    ~Marti

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