I never thought that I would ever be writing this post. Ever. I mean I had thought about it, I had longed for it but I never thought that this would be real. I have a diagnosis guys… I have an actual official diagnosis from my Rheumatologist. I have Raynaud’s and an, as of yet, unidentified autoimmune inflammatory condition. It’s been years and years but I have finally got here.
It’s weird because I was so stressed about getting fobbed off again by my rheumatologist but she came through for me just when I was getting ready to give up on her and try someone else. All of my physio’s have said how good she is at her job, but until today I had never actually seen why people were saying that.
It all started like a normal clinic appointment, i.e. sitting in a waiting room, surrounded by people who are decades older than me, and as usual I was the youngest patient there. There was quite a lot of medical students hanging around in their pale blue scrubs too, and I have come to the conclusion that this must have been their first experience in Rheumatology based on how clueless they were. I got called in to see my Rheumatologist early [this was unheard of until today... I guess today was a day of firsts] and she asked if 2 of the medical students could sit in on my appointment, which of course was fine. She asked me how I was doing and I told her that I wasn’t the best. I told her about my issues and how my joints are being problematic on nights out which is preventing me having an enjoyable time. The worst my joints have been was this past Thursday where my knees and ankles swelled up so much, and were causing so much pain that I had to be carried around. Literally, one of the guys on my course had to pick me up and carry me around with him.
My Rheumy totally understood how embarrassing it was to have to be carried around on a night out, especially by someone who was on the same course as me, which was nice of her. She also asked about my morning stiffness which is now lasting about 2-3 hours every morning and then about 1-2 hours after sitting immobile for any longer than about an hour. She agreed that, that wasn’t fair on me and was too long, which again was nice as she doesn’t usually say anything. She examined my knees and found crepitus [cracking/grinding noises and sensations] in both knees but more so in my left knee which makes sense as my left knee is significantly worse in terms of pain, stiffness and inflammation than my right knee. I also let the two medical students have a feel of my knees although neither of them could find crepitus in my right knee, which we think is because of all the movements they were getting me to do was loosening up my knees so they were less stiff than they were when my Rheumy has examined them. My Rheumy also didn’t find any fluid on my knees which is excellent news, even though I wasn’t expecting there to be any fluid.
My Rheumy then looked at my ankles and again found no fluid but found quite a lot of restriction in the range of movement, although this is nothing new and has been the case for the past few years. However she did notice that my feet were extremely cold, and my toes were “like ice blocks” which I always assumed was normal for me. She asked if my feet ever change colour, which they do into a disgusting looking white/grey/blue colour. She then looked at my hands and found the same, that my fingers are freezing cold and change colour when they get really cold. Based on this I was diagnosed with Raynaud’s, a condition that causes discolouration of fingers and toes because of excessively reduced blood flow to the extremities… Mine occurs usually because of the cold, but we believe that it is autoimmune in my case [not everyone's Raynaud's is caused by the immune system attacking it's self].
My Rheumatologist felt that my joint pain, swelling and morning stiffness had been going on long enough now that we should probably start treatment so I was prescribed Plaquenil [Hyrdroxychloroquine] 200mg twice a day. Plaquenil is a Disease Modifying Anti-Rheumatic drug [DMARD] which should basically reduce the activity of the condition [even though it still hasn't been identified] and hopefully will help with the inflammation I experience. However, Plaquenil can take up to 12 weeks to work so I was given a steroid shot intramuscually into my bum [yes it was painful!] which should hopefully help out with my symptoms until the Plaquenil kicks in. Apparently the steroid should work within 36 hours which I am really looking forward to, because as I sit here I am really struggling with knee and ankle pain despite Naproxen and paracetamol.
I am struggling to comprehend that I now have a diagnosis, it has been so long that my emotions are literally a mess… Relief, anxiousness, worry, happiness, there are too many to list. I am glad that I have a diagnosis, and I am glad that I am getting the proper treatment, but I am slightly upset that I actually do have an autoimmune condition but that’s expected right? I mean, I always knew that I had something going on, but no one wants to be sick! As you can see, I am still not 100% sure of my emotions, which is perfectly fine, today was a lot to deal with, but the main thing is that we are on the right road now!
I see my Rheumy again in March to see if the Plaquenil is working, fingers crossed it does!