Hey everyone,
So I wanted to write what’s been going on, probably for me to get my head around it a bit, but also maybe it could be a resource for someone who lives in my neck of the woods regarding Dr’s.
I will give a brief recap, but it’s a long post so those of you who don’t wanna read so much, or have read my old posts then just skip down to the section below.
A brief recap:
Onset of joint pain in 2008 (age 28), at first one shoulder and then over the next 3/4 years both shoulders, my back and one knee. Chronic pain, no energy, lack of sleep, and everything else that goes along with it.
In 2014 I was diagnosed with PsA. I also do have some visible Psoriasis on my skin. It was my dermatologist who suggested it, and I sought a reputable/recommended Rheumy in Berlin. Always the same name came up as the go to Dr. for people with Rheuma conditions, and so in a way I felt very relieved once I finally had my diagnosis and knew what was wrong with me, from a trustworthy/respected Dr in his field.
I guess I started with the usual MTX for beginners, as I was maxed out on anti inflams. I had some unpleasant side effects on MTX, but stuck with it, cos I thought it must be worth it if this pain will go away, and it takes time for it to start working. I lost my hair, I know this is just aesthetic, but I did love my hair, and it made me sad. But I thought- come on suck it up, baldness vs pain free is a trade worth making. But the stomach problems and headaches never stoped, it felt like they just got worse. I stoped taking MTX after about 6 months, feeling worse than when I had started on it.
Then he tried me on Apremilast. And I started almost immediately getting really bad pain in joints I had never had pain in before, plus other less palatable side effects which I wont go into incase dear reader, you are eating. I did stick with it for a while because my Dr reassured me that all of these new pains were coincidental. But I became chronically dehydrated and, not entirely trusting my Dr. contacted the manufacturer who advised that yes, for some people the drug can cause severe joint pains. I stopped taking Apremilast immediately, and the new horrible joint pain stopped. The Dr maintained it was a coincidence and that joint pain was not a side effect of Apremilast, but as I had spoken with the manufacturer directly and knew this to be incorrect, I lost trust in the Dr.
I found a new Rheumy and asked him to reassess me, but I don’t feel that really happened. He agreed with his eminent colleagues diagnosis. I went to a Rheuma rehab clinic, which did help a lot, especially the Cryotherapy, my flare up subsided, and as I was now nervous about the ‘hard’ meds I decided to just stick with the NSAIDs.
But, over the last year with all of the restrictions it has made it impossible for me to go for Cryotherapy. And I have had the worst flare up yet. As I talked about in my last post. I haven’t been able to shop for myself, or to complete day to day tasks. I had to minimise my hours at work to a bare subsistence level.
End of recap!
So due to my current flare up I felt I needed to reassess my reluctance to trying those ‘hard’ meds again. For me they were hard and based on my experiences I was very nervous, so it felt like a big step. I also had this niggling feeling in my tummy that something just wasn’t right. I don’t post often, but I do spend a lot of time reading your posts, and your incredibly helpful contributions (thank you!) this is a wonderful resource. And having this resource of a community of people willing to share their experiences of PsA, and to which I could compare myself, I had this niggling feeling that somehow I was an outlier.
I searched for a new Rheumatologist, I wanted to have my diagnosis reassessed, but it seems they don’t like to do this (and question colleagues) so this has taken many months, but I needed to set my mind at ease, and I so was persistent. Eventually I found one who was willing to send me for MRI’s to make an assessment. I had 5 separate MRI’s and 2 x-rays.
At my subsequent appointment and looking at the results from the MRI’s my new Rheumatologist said there are no indicators of PsA at all, anywhere. Fingers, feet and the usual suspects with PsA all show no indications of PsA. But I was in the middle of my worst flare up of what I believed to be PsA, with all the usual pain I have had over the last 10 years!
So, he tells me that I have an L5 / S1 disc extrusion resulting in compression of the sacral nerves. And he suspects a double rotator cuff tear in my shoulders. But that basically he can’t help me more because it is not his area of expertise and that I need to see an Orthopaedic Surgeon, who can treat my knee back and shoulders. With no evidence of any rheumatic disease activity he basically said let’s check in again in a few months time to make sure, but thats it.
So, I found an Orthopaedic Surgeon. He came highly recommended (which to me now means nothing), but he does work for adidas in Germany and for famous sports teams, so I am hoping he knows something.
He sent me for more MRI’s of my knee and shoulders. He has diagnosed my knee; patellar maltracking & Hoffa’s syndrome. And my shoulders; Subacromial bursitis/rotator cuff tears. He said that there are no indications of Rheuma/PsA. But that my knee shoulders and back are inflamed, and there has been some permanent damage caused by this chronic inflammation over so many years.
He recommended starting shockwave treatment immediately for my knee, I had my first treatment yesterday, so it is too early to say if it will work. It is just a bit bruised and swollen right now.
I am not sure if my shoulders can ever get back to normal, its been so long I am not even sure what that means. But from what I understand if rotator cuff tears go untreated for long enough the tendons retract (combined with muscle atrophy) which makes treatment difficult.
I am not sure if I trust this new diagnosis either. I will just have to wait and see. If it turns out to be true though, it is a bitter pill to swallow knowing that over the course of these years based on the advice of Dr’s I have inadvertently made my initially treatable, separate, injury’s worse. I have always tried to be as active as possible walk, cycle, exercise whenever I could. I tried the recommend exercises, which is obviously completely different and incompatible with what I should have been doing based on this new diagnosis (if true).
I will now based on the advice of the Orthopaedic Surgeon be resting instead. I have physio appointments which hopefully will be working towards making it better instead of worse, as was the case before. I am taking different pain meds, which also work better. And If I need surgery then so be it.
If this is true I do feel sad that I lost over 13 years of my life and my 30’s completely, essentially needlessly. If It’s wrong and I do in fact have PsA then at least I didn’t lose this (and my hair! for no reason.
I guess I will only know that if the treatment works and I am ‘cured’. Which my Orthopaedic Surgeon surgeon seems optimistic about. But I will update with that when it happens. For now, I just don’t know, wait and see.
All the best to everyone