PMRGCAuk

PMR OR MAYBE NOT?... OPINIONS WELCOMED

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.

Kathy x

8 Replies
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I did not have all the typical symptoms, notably no stiffness in the morning and that delayed my diagnosis significantly. I do hope you don’t have PMR, but it does sound like you might. The important thing is to get a very skillful Rheumy. Whereabouts are you? We may be able to suggest a good one because you have a complex history and do not need an ignorant one!!

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Hello Suzy

Thank you so much for your instant reply!

I have to say that the fact I don't have the morning stiffness that seems to be a prerequisite is making me doubt whether I have PMR.

I live in Nottingham and as you say given my background thing I need a skillful Rheumy.

Many thanks to you.

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You certainly need to be referred to a decent rheumy - and preferably one with an inquisitive mind, what a friend of mine calls a True Detective Doctor!

It certainly sounds very PMR-ish. But PMR isn't the disease, it is the name given to a set of symptoms which are due to an underlying illness and there are several, some of which are not nice and must be ruled out before the diagnosis of PMR as we talk of it here is chosen. You already have a set of autoimmune disorders so it is not unusual for another to come along to play too. But there are several that are associated with PMR as a presentation.

Suzy is not the only one on the forums who didn't suffer badly with the morning stiffness - and we keep trying to explain to doctors that it isn't "just" morning stiffness and it affects different people in different ways. There are also a few people on the forums who have had ME in the past - I had something in my late 20s that nowadays would get the ME label, it hadn't been given a name then. It lasted badly for just over 6 months, it was there for another 4 years and then it faded, to be replaced some years by something else that responded well to the HRT my then gynae decided was appropriate. I eventually stopped it after one scare too many (which is now dismissed as having been OTT) and less than a year later the symptom of PMR showed up. How I wish I had continued with the HRT!

As someone where pred gave me back my life I don't have any great worry about becoming pred-dependent. If it manages the pain that is OK. I'm not sure I agree with your endo's fear and if I were you I would want to at least TRY a moderate dose of pred for a week and see what happens - you can stop it immediately if it doesn't help at all, although you might need more than a week to get a good result.

But above all - you need a good rheumy. So research it first.

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Many thanks for taking the time to reply to me and for the advice given. Personally, I believe my current symptoms - PMR or not - have been triggered by the inflammatory reaction I have had to the TVT mesh. I also agree that it might be sensible to try to find a Rhuemy with an enquiring mind - so I will do a bit of "Googling"!

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Oh yes - the TVT mesh could well have totally upset your immune system. It's evil stuff - and at last they are waking up and smelling the coffee.

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Welcome to the forum Pipalina

Whilst reading through the guidelines I came across this:

“The presence of the following conditions decreases the probability of PMR, and they should also be excluded:

Other inflammatory rheumatic diseases

Drug-induced myalgia

Chronic pain syndromes

Endocrine disease

Neurological conditions, e.g. Parkinson’s disease “

academic.oup.com/rheumatolo...

I think you’re going to need an outstanding rheum to pick these facts apart. Don’t know if you’d be prepared to travel? A name that repeatedly comes up is Rod Hughes at Chertsey; or Sarah Mackie (Leeds). I have seen neither but many on the forum have, and they obviously instilled great confidence, and seem to be able to ‘think outside the box’. GOOD LUCK!

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Hello - and thank you for your reply to my post. Travelling beyond Nottingham or Derby area to see a specialist isn't really an option for me. I live alone and generally have to make my own way to and from any appointments. If I'm not well enough to drive myself then at least with a local appointment I can take a taxi.

I have a read a couple of posts where Dr Hughes is mentioned and he certainly seems to have a good approach to his patients.

I think it will be sensible of me to ask my GP to refer me to a Rheumy but my research isn't turning up anything or anyone too exciting so far!

I'm just going to have a read through the link you sent me...thanks again - Kathy

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How about phoning the PMRGCA helpline? They may be able to suggest someone in your area?

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