Today I saw a “new” rheumatologist who I will call Dr P. I put new in quotation marks because it was a new referral but I have actually been under that doctor before 10 years ago.
10 years ago, I had been diagnosed with ME/CFS and nothing else. Then I saw Dr P who diagnosed me with fibromyalgia. He never said that my first diagnosis was wrong and I didn’t have CFS. He wanted to track my sleep with a special wristband (it was like a fitbit but fitbits weren’t really a thing back then). I never got any follow up about the sleep tracker thing.
I stopped seeing him for some reason but 10 years later, I got re-referred to him to investigate possible sjögren’s syndrome. Which is why I had my appointment today.
He read my referral letter and it said about having CFS. So I said I had been diagosed with CFS/ME and fibro and gave him the list of dianoses. His response was that it is impossible to have both fibromyalgia and CFS/ME. Despite all the doctors I’ve seen since including rheumatologists, no doctor has said that to me in the last 10 years. Also, there are loads of people that are diagnosed with both, so either he is wrong or all those people are incorrectly diagnosed.
He asked about my sleep and I explained my sleep pattern. He asked to see my hands and bent a few joints, then to see my back where he poked me a few times and asked if it was tender, and I said yes. He then said he needed to look at my back without my tshirt in the way, and proceeded to lift the back of my tshirt before I had a chance to respond. I would have given permission for him to look but it was weird for him to do that before I could say anything. As a result of this, he said I was hypermobile in some joints but not in my hands.
He said that based on my sleep pattern, I have CFS, not fibromyalgia. Remember that he diagnosed me with fibromyalgia in the first place- but I don’t think he realised he was the one to do that.
Dr P asked if I was on any medicines for my mood. I said no but I had been in the past. I came off the medication because my mood was better and I didn’t need them anymore. He asked about my social life and I said I don’t see my friends much but I get to the park and see people there and I have my dog with me most the time. There was no mention of socialising online. He asked if I work or study- I said no but I have lots of hobbies. He asked who was living with me- I answered and mentioned my stepdad. He asked if I saw my dad and I said I hadn’t had contact for 2 years and I had never had a good relationship with him so I was happier without him in my life.
Dr P said that from what I told him about my life, he thinks it’s impossible for that not to have an effect on my mood. And basically said that I was suppressing my emotions. So apparently you have to be depressed if you are isolated at all. I don’t actually feel lonely at all most of the time.
He went on to say that my CFS will be caused by my bad relationship with my dad and by sleeping too much. I should avoid naps, sleep less, have therapy and increase my physical activity aka exercise more. I can’t avoid naps since I only have naps when I’m unable to stay awake until bedtime- they are usually an accident. Again, I can’t sleep less because they I just fall asleep constantly. I’ve spent years in therapy in the past and I have no idea what I would need to talk to a therapist about since I feel happy. And I exercise as much as I can.
He also said I’m using my walking frame “like a crutch” but then said about it showing myself and others that I’m disabled. So I think he meant an emotional crutch rather than a physical crutch. And that I should try to stop using it.
He didn’t ask for much history. He didn’t ask if I smoke or drink. He suggested I use coffee to stay awake- I didn’t bother to tell him that I feel really ill on any caffeine because by that point I was just waiting for it to be over. He didn’t even ask about psychological history so he knows nothing about the trauma I’ve been through (several years after I first got sick so it couldn’t have triggered it) which you would think he would want to know if he’s going to blame psychological stuff. He also didn’t ask how much exercise I get before telling me increase my exercise.
However, he is sending me for a test for sjögren’s syndrome. So I consider it a successful appointment. Not a good appointment, but successful.