Conflicting Medical Opinion: EDS

So today’s post is a difficult one for me to write. I tried to film it as a vlog as events unfolded, but that was one step too much for me. The topic of this upset was my appointment with the rheumatologist, arranged by me gynaecologist. Unfortunately, the rheumatologist had a conflicting medical opinion to the one who diagnosed me with Hypermobility Syndrome (HMS)/Ehlers-Danlos Syndrome Hypermobility Type (hEDS).

I’d had two very difficult days prior to this. I had to leave the house at 6:15 to take a train & a bus to an 8:30 physio appointment. By the time I got home I was physically & emotionally drained. I cried & cried & cried! The next day wasn’t much better & the day ended in tears.

I was feeling nervous prior to my appointment & my Irritable Bowel Syndrome (IBS) had flared up as a result. In all honesty, the appointment is a bit of a blur! I was weighed, measured & had my blood pressure taken, which the nurse noted was high. I was then ushered in to see the doctor.

He started by asking me why I was there. I felt put on the spot & didn’t know what to say! I found my list & picked bits out from it – forgetting the important bit about my neurologist wanting me to be seen (the importance of this will become more apparent). I told him that my sister had been diagnosed in August (as well as being diagnosed with Raynards) & that, as Dan & I are going to be trying for a family in the new year, it was important for us to know. I’m struggling to put all this into words now, so you can imagine the pickle I got myself into! He also asked me what I wanted to get out of the appointment. My answer was that I wanted help managing the pain & fatigue. When I mentioned that my hand’s & feet get very cold he told me that I don’t have Raynards – as though I thought that I did!

After an examination, I was told that I scored 1-2 on ‘the’ scale (I wasn’t told which one!) & that, though I was hypermobile in some areas of my body, I was not classed as having HMS/hEDS. Less than a month prior I’d been scored as a 9/9 & diagnosed with HMS/hEDS! As you can imagine, this was particularly frustrating!

I don’t remember much more that was said as my brain was overwhelmed with thoughts & emotions, none of which I could put into words. I just wanted to get out of there & cry! I remember being told that physio could be arranged. I asked about management of the fatigue I experience & was told that there’s no one magic pill that I can take & it’ll go away. As though that was what I believed! I know that this is a condition where management is key & that, while I’ll have good days & bad days, it is a chronic condition.

The consultant went on to tell me that he could arrange for Cognitive Behavioural Therapy (CBT) for me to help with the fatigue. I think it was this that upset me the most. I’ve never heard of CBT being used in anything other than psychological conditions. I felt as though, having told him that I’d suffered from Post Traumatic Stress Disorder in the past, his approach to me had been different to what it would have been had I not.

I got the feeling my concerns weren’t being taken seriously & he thought I’d been self-diagnosing. He told me that they could do a blood test to check for things that could be causing the fatigue, but that 99% of the time they come back normal so it was very unlikely to be worth doing. When he asked if I wanted the blood test ordered, my reply was that I only wanted it done if he thought it were necessary. I thought this would reduce (or at least not fuel) his opinion that I wanted a diagnosis for something I didn’t have.

At one point, when I asked about the other symptoms I’m experiencing (sweating, palpitations, dizziness & a cold sensation rushing down my legs), I was told that everyone experiences some symptoms in their life but that it doesn’t mean there is something wrong with them! If this is the case, I’d like to know why my neurologist feels the need to refer me to his colleagues in the Autonomic department for a tilt table test & a management program as he feels there is a significant chance that I do, in fact, have Postural Orthostatic Tachycardia Syndrome (PoTS)! Unfortunately, this conflicting medical opinion has only muddied the water & made it more difficult for my undiagnosed symptoms to be taken seriously.

I don’t actually know what he thought my pain, fatigue & subluxations were caused by – he didn’t say! So we’ll just have to wait & see what his letter says! Other than physio, I don’t know what is being put in place for me. To be quite honest, I don’t know whether I will go to the physio as I am receiving this from the hospital that diagnosed me with HMS/hEDS & am very happy with my physio there. He is extremely knowledgeable & I feel he understands me. If necessary, I’ll go to CBT just for them to agree it’s not the right treatment for me & have it written down on paper!

I just managed to get out of the appointment without bursting into tears. Those three days were the lowest I’ve felt in a very long time & it scared me. After having two good days I’ve finally felt able to put pen to paper (or fingers to keys!).

My neurologist wants me to have non-paracetamol days to avoid the chance of me developing rebound headaches. I started this last week, taking paracetamol Monday-Wednesday, my busy days. I then stopped taking it Thursday-Sunday. I was fine to start with, but by Sunday I was really struggling & had to take 2 doses. I then remained in pain without additional relief for a few days.

I strongly suspect this is the reason for my low days. I am going back onto taking the full dose of paracetamol for the duration of the Christmas holiday & will be speaking to my GP in the new year for help manage this reduction with minimal impact on my joint pain & subsequently mood & fatigue. I’ll keep you posted!

Thank you all for taking the time to read this – it has been a hard post to write. Your continued support means more than I can put into words. Have you experienced conflicting medical opinion before?

I’ll be taking a short break from both my blogs & also YouTube between Christmas & the New Year.

So all that’s left for me to say is that I hope you all have a happy, low-pain Christmas!