Rheumatology. Expectations vs Reality

Rheumatology Expectations vs Reality

2 days ago, I had my 4th rheumatology appointment.

It was a disaster.

Before I elaborate, let me give you a brief background.

On my initial appointment seeing Dr Evil in August 2016, I explained that my swollen toe was the first symptom I ever had of Psoriatic Arthritis. I said that initially I wasn’t too concerned, because I possibly stubbed it or maybe I had hurt it when I was running. In short, it wasn’t an alarming injury. He leapt on this and kept accusing me of admitting that I caused the injury to myself whilst running, which was not the case. His accusatory tone really annoyed me and my Mum, who I took to the appointment for support, had to calm me down and stop me from really shouting at him. Eventually, he conceded that it wasn’t a running injury and was PsA after all (WELL DUH). He threw me a leaflet for methotrexate, sat me on a bench in the corridor, and that was it.

Appointment number 2, December 2016. This time I take Boyfriend with me as moral support, and to see what he thinks of Dr Evil. What would happen is Dr Evil going out of his way to tell me that I have nothing wrong with my feet. The pain I feel is probably because I ‘walk funny’ (he went through how many years of medical school for that diagnosis?!) Only for me to read the letter he sent to my doctors surgery sometime later saying “severe tissue damage and inflammation in feet”. Which doesn’t tie in to when he fobbed me off. I was told to stop taking anti-inflammatories my doctor had prescribed me as they were giving a false reading.

Appointment number 3. April 2017. This time, I opt to go it alone. He was rude and dismissive in front of both my Mum and Boyfriend, maybe he’ll be different if I’m by myself? He was. Just. In what was the worlds quickest appointment, he asked to take a look at my psoriasis and my feet. Admitted that the methotrexate wasn’t working and that if my psoriasis hadn’t cleared up by my next appointment and my toes were still swollen, my medication would be changed. I was, however, told off for the fact that I had stopped taking anti-inflammatories even though this was exactly what I was told to do at my last appointment *sigh*.

Which leads me to appointment number 4, 2 days ago.

I decided to be big and brave and go it alone. I wrote up bullet points about everything that I was feeling and going on in my body since I saw him last. I knew I was going in to this appointment with the knowledge that my Doctor was concerned about my arthritis and more critically, my crippling fatigue, and my Nurse was increasingly horrified by my high levels of bruising, my inability to fight even simple infections and my constant dermatitis. My psoriasis not only didn’t improve over time, it actually became worse. I felt sick for 3-4 days after my increased methotrexate dose and the fatigue was impacting me worse than before. The swelling in my toes and right ankle still wasn’t controlled with either the mtx or the anti-inflammatories. I had a long list of new symptoms ranging from numbness in my hands that spread the length of my arm, to stiffness in my neck and shoulder so severe it would be hard not to vomit. Add to that, my psoriasis was now present in my fingernails as well as my toenails. In a nutshell, I wasn’t good.

The Expectation

I would sit in the chair, calmly, precisely and succinctly tell Dr Evil of my symptoms and how I have been feeling. He would take each one on board, remember what he said the last time about changing my meds, take a quick look at my psoriasis, go over the new medication options, and bid me a kind farewell.

The Reality

I was ignored, dismissed, argued with and humiliated.

I had hoped that the fact a student was in the room with him on this occasion would work to my favour, how wrong I was.

He started by asking how I was. I replied that instead of feeling better on 25 mg I didn’t, and I actually felt worse.

I have severe fatigue I explained. I no longer make it to my office on a Monday morning because I am a zombie. It is destroying me. My Doctor is increasingly concerned with how little energy I have, we’re hoping to get me off the mtx so I can go back to normal.

“Fatigue is nothing to do with your arthritis or the mtx. That doesn’t concern me”

(If you go on to Arthritis Research UK website aka the holy Bible on arthritis, you’ll see that fatigue is one of the more challenging symptoms and side effects I’ll have to deal with. Dr Evil is also Dr Liar).

He asked me to tell him where I hurt. I HATE this question. Where do I hurt? Sometimes I hurt in my toes, sometimes my knee hurts, other days my neck hurts. Sometimes I don’t hurt at all. What does the pain feel like? I HATE THIS QUESTION EVEN MORE. I don’t know. Having never been on fire I don’t know if it burns, tingles or whatever. It just hurts.

Put on the spot, I replied my left foot, but with a new, very prominent pain in my big toe on my right foot. So, it was straight on to the bed for me to have the ultrasound on my toes. No inflammation. Chronic dactylitis. Osteoarthritis in the big toe. Methotrexate is clearly working. Off you go.

Clearly working. Clearly working. Clearly working.

This was what pushed me over the edge. Clearly working. Stay on mtx.

At this point, I started to cry, pleading with him to take me off of mtx. I’ll refuse to take it I screamed. My tears fell harder, he threw a tissue at me and told me I couldn’t change meds because I only have arthritis in 3 toes and nowhere else (hahahahahahahahahaha best joke I’ve ever heard). What about my side effects? The pain? The stiffness and the swelling I am feeling? It isn’t real. It’s in your mind he replied. Maybe you only feel pain because you are depressed.  Depression is causing you to feel pain. Not arthritis. The pain isn’t real. Depression explains your problems. It you weren’t depressed, you would feel none of these ‘pains’. You only feel tired because of it.

For the record. I’m not depressed. I’m just fed up of hurting and a body getting worse, not better.

I won’t take it, I won’t I continue to scream. He left the room and returned with a leaflet. Sulfasalazine. Stop mtx and take this. You’ll take it daily. Wait in the corridor for the nurse to take your blood.

And that was it. Exactly the same outcome as my first appointment almost a year ago.

I sat on the bench and my tears turned to wails and my wails turned to uncontrollable emotion just pouring out of me. People passed me in the corridor and didn’t even stop. A slew of nurses walked by and ignored me. Dr Evil himself walked past me without a care in the world to get his next patient. I opened up my phone to use the selfie camera to see how bad my make up ran. I see now that I accidentally took a photo of myself. My face is etched with pain. I’ve just been dismissed, again. Accused of making problems up. My credibility is in tatters. Again.

The nurse came for me, sat me down, and asked me what was wrong. My tears fell harder. I managed to splutter that Dr Evil Liar didn’t believe me, he thinks I’m a fantasist, he says there is nothing wrong with me. She calmly stroked my arm, and told me everything would be ok. Don’t apologise for crying she said, I am just sorry that I cannot help you. She could tell I wasn’t making it up. She took my blood and got me a glass of water. She sat with me, silently, whilst I drank the water, making sure I was ok. And as I came to go, some 30 minutes later, she softly took my arm again, came close to me and said “You will be ok my darling”.

Well, all my hard work to stop crying went out of the window. Enter from stage left more tears!

I managed to drive home, tell my boss I couldn’t come in to work, and reflect on what had happened.

Positives: I did at least manage to get off mtx.

Negatives: Everything else.

For a split second, I began to wonder maybe I am making it up. Then I pulled myself together and realised, I’m not. I’m many things in this world, but I am not a fantasist.

So where to go from here?

I’m going to see my GP and explain to him how this god awful appointment went. I need to research my symptoms and ask for his help (though I hate this, what if it’s MS? Fibro? What if I’m dying? I can’t be trusted to look up symptoms).

I’m going to get a calm head on me again. I’m getting there. I’m no longer planning to make a voodoo doll of him, but I am going to through the procedure to change rheumatologist.

I’m going to embrace sulfasalazine with open arms and hope for the best. But expect the worst.

I’m going to need a few more early nights to sleep off my Kim Kardashian crying face. I’m almost there.

I’m going to eat copious amounts of donuts and not care.

I’m going to enjoy my first weekend without methotrexate.

I’m going to worry about what my body will do to itself in the down time between meds.

I’m going to look back at this appointment and laugh. To make it in to a chapter of my book. To tell stories to other people about how bad my treatment has been but to laugh at it.

I’m no longer going to have expectations about what my appointments will be like, what will happen and what the outcome will be. But I will be quite sure I’ll never have an appointment as bad as this ever again.

But mainly……

I’m going to find Karla, that wonderful nurse who took time out of her busy day to look after me, and apologise for pretty much blowing my nose in her hair mid cry.

10 thoughts on “Rheumatology. Expectations vs Reality

  1. I’m so sorry that you’re going through this. It took nearly a decade for my arthritis to be diagnosed, and I had many appointments that were similar to this along the way, constantly coming out feeling like the suggestion was it was all in my head. I’m very lucky to now be in the hands of a wonderful rheumatology team, and you should be too. Sulfasalazine seems to be working for me, fingers crossed you will see the same results. Your GP sounds lovely, I wonder if they might be able to refer you elsewhere? Best of luck x


    1. Gosh waiting a decade to get diagnosed must have been torture for you 😦 I gave my rheumatologist so many chances, but no more. I don’t need to worry about him on top of everything else! Really glad that sulfasalazine is working for you! I should collect my prescription some time next week, last night was the first time in 10 months I haven’t taken methotrexate, I almost missed it!!x


  2. So sorry you had to go through such a horrible appointment. There’s nothing worse than a medical professional not listening. I had quite a few appointments of no one listening and being told it was all down to stress. Is there any chance of changing and finding a nice, friendly, understanding one? 🙂 xxx


  3. Sorry, not going to comment on your every post I promise! haha But you can, and should, absolutely request that you see another Rhuematologist when you book another appointment. Ask the nurses at the desk when you leave your next appointment and get it changed to someone else that you might get on with better. It’s always a good idea to get a second opinion on your condition as well.


      1. Might be worth investigating a bit more then to see what your options are. If you have to go further away to see a doctor that actually understands then in my opinion it would definitely be worth it.


  4. I have been in chronic pain for the past 2 years without any answers. I have had the same experience with two Rheumatologists and I have an appointment with a 3rd Rheumatologist in about 3 weeks. I have switched clinics, found a new GP Dr and she knew immediately looking at my foot and hand I had psoriatic arthritis. I started crying in her office and kept apologizing. Someone finally listened and was willing to help. I’m now scared of the med’s and the damage they can do. Have you used any essential oils to help? I’m hoping to find a way to eliminate the immune suppressing drugs when we are struggling because of a compromised immune system to begin with. Thanks for sharing your journey. It’s nice to know someone else “gets” it.


    1. Hi Jill, sorry for my super late response. What essential oils do you use and how do you use them? I’ve never used them before but I’m willing to try anything! Have you started on any anti-immune suppressants yet? I know that the side effects do look scary but my advice would be to give them a go because I’m personally more scared of how my body could get without them than the side effects. I am now 11 weeks without medication (since I came off methotrexate) and I’m in agony. just a few weeks to go before I start my first biologic. Please let me know how you get on on your journey, I’m always here for you!


      1. So I’ve been on Methotrexate for a couple months at 20mg once a week. My Dr. was impressed with how well I was responding to the low dose. I take Frankincense and Copaiba essential internally twice a day and I think that has helped tame down the inflammation. I had a long talk with Dermatologist the other day about getting rid of the psoriasis.


      2. Opps, I hit the wrong button!
        The Dermatologist suggested I read Healing Arthritis Naturally by Stephanie Blum. She said leaky gut is a huge issue for people and if I can heal my gut the arthritis and psoriasis will go away and I will be able to get off the awful med’s. My book will be here tomorrow, I can’t wait to get reading. It was refreshing to talk with a Dr. that not only heard was I was saying/asking finally but took the time to respond and know what I was talking about to offer advice.


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