I apologise in advance for the length of this post, but I think the background information might help some of you to form an opinion. I thank you if you have the time and inclination to read on…
On 11th February 1992, following a viral attack, I contracted ME (Myalgic Encephalomyelitis); twenty-six years later it still hasn’t gone away.
So, I’m pretty familiar with joint pain & inflammation, muscle fatigue, general overwhelming & debilitating fatigue, cognitive impairment, sensitivity to light, noise & smells and a whole host of other symptoms that taunt, tease and come and go whenever is their wont.
In 2009, I was diagnosed with auto-immune Hashimoto’s disease = Hypothyroidism. That’s the one that makes you wake-up fat (if you can stay awake long enough to realise you’ve gotten fat!). Despite medication I’m still carting three extra stones around nine years later.
Throw in a couple of other “immune” issues along the way – Hypothalamus Pituitary Axis malfunction causing suppression of TSH (thyroid stimulating hormone) and HPA (Hypothalamus Pituitary Adrenal) Axis malfunction causing mild hypocortisolism. Adrenal glands work but the signal to them to produce cortisol as needed by the body is a little skew-whiff.
Fortunately, I have a gifted and patient focussed Endocrinologist (Dr M) who does his best to help me manage my Hypothyroidism, the vagaries of my ME and my ever-malfunctioning immune system.
In September 2016 I had a TVT Sling (tension free vaginal tape/mesh) operation which is used to treat stress urinary incontinence that often occurs after child birth. Albeit my “child” was 44 years-old so I’d lasted quite well! The use of mesh in this operation is now banned in Scotland and under review in England.
I reacted badly to this surgery. Whilst, my body didn’t quite go in to full foreign body rejection mode my immune system was not happy having the mesh around. Dr M, my endo, says my body is “irritated” by it and it is causing a chronic inflammatory response in my body. Meaning my ME symptoms & pattern have gone from chronic with acute episodes to acute with the odd chronic day.
Fast forward to July 2017 and a day trip to London. The trip coincided with the Gay Pride March – a fact to which we had been oblivious until we discovered that we were sharing the streets of London with about one million glittery people.
Because of the crowds we couldn’t get to any location other than walking and pushing our way through the colourful crowds. My whimpering’s that my hip joints were sore were totally lost in the celebratory cheering…
No surprises - but following my outing I had a bit of an ME “blip”. However, I felt as though I was also having a viral attack. I felt quite wheezy, generally unwell and had bilateral hip and shoulder pain which didn’t seem to want to go away.
Joint pain and muscle fatigue are a feature of ME but usually joint pain comes and goes. This time there was was a different pattern - both shoulders joints hurt and both hip joints hurt and it wasn’t going away. I felt very debilitated and was struggling badly with energy levels.
Several days before a review appointment with Dr M in January 2018, I was struggling to get out of bed in the morning. The insidious pain had suddenly decided to become acute pain. I was plagued with morning stiffness (but not for long once I’d unstiffened) although the joint pain continued throughout the day.
I would experience more pain and stiffness after inactivity/trying to rise from a seat and so on…I also felt generally very unwell which I put down (as usual) to an ME blip. The pain did not subside during the night and I came to dread going to bed because of the constant wakening in pain.
I told Dr M of my increasing bilateral shoulder & hip joint pain and that the muscle pain seemed to radiate down my arms and one thigh. His comment to me was that normal treatment would be steroids but for me he felt this would be disastrous given my adrenal problems. He believed I would become steroid dependant and that given my weakened immune state would not be able to cope with many of the other side effects of steroids.
We agreed that we would try to stabilise all my acute symptoms with closely managed T3 (liothyronine) medication.
It’s not working. My GP wants to refer me to a Rheumatologist. All my blood tests results are normal save for my CRP which has been up and down since I had the TVT surgery in 2016 but not drastically so. Latest result of CRP 11.
My GP is suggesting a referral to a Rheumatologist or a referral back to my Endo doctor for his opinion before referral.
For my part the symptoms I have been experiencing feel quite different and distinct from those of my ME.
The Quandary is – is this just another manifestation of my ME or is it PMR?
I don’t have notable morning stiffness which seems to be part of the criteria for diagnosis of PMR. I certainly have stiffness & pain after inactivity together with feeling generally/overwhelmingly unwell.
I have bilateral hip & shoulder joint pain (big time) that radiates down to my muscles every day to varying degrees
Unlike my ME joint/muscle pain does not subside with rest.
I have (occasional days) when I feel as though the pain and feeling of un-wellness subsides and makes me feel confused and as though I am a person making a fuss about nothing.