Time to Switch Rheumatologists?

I’ve been seeing a rheumatologist for many years who has never been willing to commit to a diagnosis one way or the other. I’ve had many joint issues along with dry eyes, severe psoriasis (plaque, inverse and guttate) and fatigue. I also have Hashimoto’s thyroiditis. No shortage of autoimmune here.

I’ve had psoriasis since I was 16 or 17 and I’m 55 now. I was complaining of severe wrist pain and they were plainly swollen but the plain films were allegedly negative according to him. So, he put me on Meloxicam and that’s that. Fast forward to next appt and my wrists are worse and this Meloxicam is minimal in benefit and he finally acquiesced and sent me for an MRI of my wrist. The DX is scapholunate advanced collapse (SLAC wrist) which is an arthritic condition brought on by a past trauma to the wrist then arthritis sets in and damages the scapholunate tendon or some such thing. Bottom line I need surgery and I have it in both wrists.

I go to see the surgeon who looks at the plain film where he shows it to me clearly….didn’t even care about the MRI so clearly my rheumatologist doesn’t know how the heck to read an x-ray very well at least in my case. So I have the 1st surgery which I’m in my 7th week of recovery now and my wrist actually isn’t too bad; however, my fingers and knuckles blew up after surgery which I initially thought was just from the surgery but now I’m beginning to believe this isn’t the case. They are really painful to the touch and the surgeon doesn’t seem to think I should be swelling this far out post op. I’m wondering if trauma from surgery caused a psoriatic arthritis flare in that hand. Not that I’ve yet to be diagnosed.

It’s all very frustrating and depressing. I am in the process of getting referred to another rheumatologist but who knows how long that’ll take. I know it’s kind of a rambling story and frankly there’s so much more I could say but I guess the bottom line is I feel like my doctor just does not give a damn. Rheumatologists are hard to come by so I stuck it out but now I feel like I’m just better off on my own if I’m going to feel worse after I leave an office than when I entered.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • ehleyla
    8 months ago

    I understand what you are saying. My journey started with a problem in my right knee — on day it just started hurting really bad in the back. It was right after I was recovering from the stomach flu given to me by my grand kids (Lucky me!)

    The pain got worse and my doctor referred me to an orthopedic doctor. He said that since my knee was now locking I had a torn meniscus and need arthroscopic surgery. I probably did, but what a mistake!

    Two weeks later I returned to the doctor and my knee was twice the size it was after surgery! The swelling went all the way down my leg to my ankle and foot — I could barely walk.

    No one said much — just the way it happens sometimes and put me on Meloxicam. I did not get any relief — but I did start to really loose my hair. Three months after the surgery, it was still the same.

    I went to my Primary doctor, and he really listened and did tests — then he referred me to a rheumatologist. I will cut the story short to say that after 11 months I was still in a lot of pain, my hair was still falling out, I had bad psoriasis on my scalp and other places all over my body. I did not want to move, do anything or really see anyone — I just wanted to veg!

    I saw a dermatologist for my scalp and during our talks she talked about her rheumatologist. She was not in my current health care corporation, but since I am on medicare, I went anyway.

    What a difference!!! She listened really carefully, asked a lot of questions and gave me some suggestions. She added to my meds, and told me about a suppliment – Turmeric.

    After just THREE DAYS I started to feel better and the meds did not break my budget. Find another rheumatologist!!! Ask you primary or anyone else you know. Finding a good doctor is sometimes hard, but wow, did it help me.

    I hope you find another rheumatologist and start to control you PsA. Good luck!

  • CathyD moderator
    1 year ago

    Hi Irp62!

    Thank you so much for sharing your story with us. It sounds like you have been through a very frustrating time with your current rheumatologist. I truly hope that the referral to the new one comes through soon and that you have a better experience with them, and get some answers. It can be so difficult when you have to deal with worrying about your rheumatologist on top of the symptoms and stresses that a condition already brings with it.

    I had not heard of SLAC before – it sounds very painful and difficult to deal with. Do you have a date for your next surgery yet?

    I hope you will find this community a place of support. Thank you for being here and contributing! <3

  • lrp62 author
    1 year ago

    No. I haven’t scheduled the next surgery. My surgeon has me in occupational therapy now and it is so painful I cannot imagine going through another surgery all over again. I see the new rheumatologist tomorrow. Keeping my fingers crossed it goes better with this one. Thanks for replying.

  • VickiN moderator
    1 year ago

    Hi lrp62! Thanks for taking the time to share a bit of your journey with us. My goodness, I’m glad to hear you’ve got the new referral process underway, your Rheumatologist sounds like a difficult person to work with. It can be so hard to find the right one, I completely appreciate your frustrations. Hopefully you can get in to see a new one soon (in Canada I think there’s something like 1 Rheumatologist for every 100,000 Canadians. It can take such a long time to get in!)

    I thought you might be interested in this article about PsA triggers. It does talk about trauma being one of them:
    https://psoriatic-arthritis.com/psa-basics/cause-triggers/
    From personal experience on this forum, there are many who have said they felt surgery caused a flare for them.

    I’m really perplexed why your Rheumy wouldn’t nail down a diagnosis. Are there other diagnoses they are considering? We’re here for you, please do stop by anytime.
    -Victoria, Community Moderator

  • lrp62 author
    1 year ago

    Hi Vicki, with respect to other diagnoses, I’ve already been diagnosed with Hashimotos thyroiditis , I’ve had Thygesons punctate keratitis which may be autoimmune although the etiology is somewhat unclear from what I’ve read. My surgeon was concerned about how tight the skin in my hand was post surgery and tested me for scleroderma. Thankfully that was negative. I just had an endoscopy for difficult swallowing and I’ve been diagnosed with eosinophlic esophagitis. Now I have to see an allergist/immunologist because I could have food allergies. I’m overwhelmed by the whole thing. I just know I’m tired. Thanks for sending the link.
    Lisa

  • olyndy
    1 year ago

    Your story sounds just like mine. I sometimes think did these specialists train at all. And a bed side manour is something they ob never heard of. I have been treated like a bit of —-t on their shoes for over 40 years. I should of done what u have & changed my whole hospital, as they were all the same where I live. Good luck with your diagnosis which is very ob to any fool. But I know how u feel

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