Has anyone heard of Parsonage Turner Syndrome? Out of interest.

[Greensleeves]

Hello ,

I was diagnosed with PMR in September 2012 .

I had returned from holiday , had my annual flu jab and noticed awful stiffness in my arms and hips whilst at Yoga . It increased to agonising electric shock pains , from shoulders downwards , my biceps would almost spasm and go hard , the pain grew worse until I couldn’t lift my arms , dress myself or turn in bed.

The first GP said it was wear and tear , the second advised me to go to the local physiotherapists in the village.

They diagnosed PMR , the GP was happy with that and prescribed Prednisilone.

I was reluctant to take it and visited a sports physiotherapist weekly a few miles away.

The sports massage she did was great, I’d have a few hours of respite from the pain. she concentrated under my arms, which sounds weird now .

Was the pain she caused preferential than the original pain?

However by January 2013 , it was unbearable,

I took the Pred and had instant blessed relief.

I managed to taper off within 2 years, but was so ill, I saw a locum GP , in agony and drenched with perspiration.

She had me do a barrage of blood tests and put me on 30mg Pred , also referred me to a rheumatologist.

All bloods were okay, no raised inflammatory markers, no nasties , no lupus , RA etc .

By the time I saw the rheumatologist I was comfortably at 5mg .

He advised I stay at that dose as a maintenance dose forevermore.

I did as he instructed for several years then reduced myself to 2mg .

I was okay at 2 mg .

Things went bad when I caught Covid in December 2020 and needed hospital treatment for vomiting and dehydration.

I had an adrenal crisis, my heart was going crazy, the alarm on the machine I was attached to was constantly going off.

i had IV Dexamethasone, which was marvellous, IV fluids , antibiotics and oxygen.

I was okay for a couple of weeks then developed Long Covid and PTSD .

I’ve never been able to reduce any lower than 7.5mg since then things were made worse by the loss of my Mum last year and other health issues, as well as a repeat Covid infection. , I have no reserves. 10mg is comfortable although I’m challenging through on 7.5 mg with painful arms and hips .

I happened to google electric shock pains and polymyalgia Rheumatica .

All that came up was Parsonage Turner syndrome, which from reading about it , could have been be diagnosed with an MRI .

I don’t believe I have PMR anymore, despite the discomfort and exhaustion, but am completely stuck on steroids.

It’s going to be very difficult to reduce.

I tried 7mg one morning and my body missed that 0.5mg .

I know 7.5mg isn’t covering my needs but am trying to live with it .

Im not adverse to Pred , it’s caused gastritis and cataracts , but it has served a purpose.

I don’t want steroid sparers and accept I’ll always need pred.

The adrenal crisis with Covid, was terrifying and something I’m always conscious of and don’t ever want to experience again.

Do you advise I persevere ?

I have lots of continuing stress with a serious complaint against my mother’s care .

Whether I had PMR , or that rare syndrome, I’ll never know now . My Mum did have PMR and GCA .

I look forward to your thoughts . I asked a similar question on my last post but appreciate your input and thoughts.

With thanks x

[PMRpro Ambassador]

At present I think there isn't a question - you stay where you are. You are under considerable stress and almost certainly don't have any adrenal reserves, This isn't the time to be trying to persuade them to wake up and function reliably.

As for was it/wasn't it - I don't think there is any future in worrying about that. It will only add to the confusion. For what it's worth - I'm not convinced from what I have found.

But as to how much pred: I don't see the point in struggling on not enough. When I was under lots of stress, I took what I needed to feel reasonably well and function. And I would do it again. Life can be hard enough without needlessly introducing more pain.

[Grammy80 in reply to PMRpro]

You have received advice from PMRpro who knows much more than I, I only have GCA. But, for what you are going through and your poor body has experienced, I'd certainly chime in and say do what you must to have a better quality of life. Be kind to yourself. My best💞

[Greensleeves in reply to Grammy80]

Hi Grammy, thank you for replying.

PMRpro is wonderful , her advice is always the best.

I’m sorry you have GCA , I wouldn’t want that, my Mum had it , but wasn’t treated for it. I hope you’re recovering well now and on the other side.

I agree quality of life is the most important thing to consider.

I am tired with worry and battling about steroid reduction, it’s virtually impossible when life isn’t easy and there are challenges and daily battles.

Thank you for your lovely words.

Wishing you very best wishes xx💞

[Greensleeves in reply to PMRpro]

Thank you PMRpro , always a comforting voice of reason for all, despite your own difficult challenges .

Life is beautiful but also very hard . ,

From caring, I remember taking 15mg and more in order to cope , we do whatever we have to at the time. I agree with you, I’d do it again too , there is no question. I said to my son I don’t even remember sleeping, it became like a dream.

I am sorry you had to go through that awfully stressful and difficult time caring for your husband.

I don’t think these adrenals will ever work again. I can live with that and was grateful the Pred stopped that awful pain.

I don’t like being dependent on medication, but as we get older most people require different medications .

I have the GP advising me to eat certain foods for energy. I said that’s all well and good but I don’t have any reserves in the tank.

Its exasperating , I need more than food . It’s astounding how many people really have no concept about our daily existence.

Once again thank you for your support and input .

I’ll see how long I can continue on 7.5 before the dripping tap has filled the bucket.

Whether it’s PMR , steroids or whatever it was, I’ve got to deal with the here and now. xx

[PMRpro Ambassador in reply to Greensleeves]

Do tell me - what is supposed to give us energy?

I have said before - sometimes what we need to do is stop even thinking about tapering, take what gives us a decent quality of life and have a holiday. Sometimes that leaves us able to reduce the dose when we get back to it!

I am lucky - I have a lovely rheumy who always says that quality of life is paramount. I've been batting back and forth between 4 doctors who have all wanted to not allow me to take medication that would have helped. Christian drew a line under that and gave me the steroid jab that I suspected would work when nothing else did but no-one else would talk about. The Pain Clinic didn't really achieve anything - can't take this because of long term effects, can't have an injection as you might bleed, And the end result was everything hurt. And he has sorted 90% of it! He is the only one who seems to see the whole picture - and that is what makes him such a good doctor.

[Greensleeves in reply to PMRpro]

When the GP was telling me how to taper , I replied it’s impossible at present and I’m so utterly exhausted I could sleep right now.

She then printed off foods we need for energy. I’m not a crying person, I never cry , but could have cried from sheer frustration. Emotional yes , but not a crier.

She’d have still been at 6th form college or med school when I started this journey.

Getting away from everything would be great. Just lying in a quiet hotel room or a caravan listening to the sound of the waves on the shore would be great . Peace and quiet and no stress . Something to break this current situation. Notice I want to be lying down on a bed.

Your Rheumy sounds great PMRpro , he listens to you and he looks at the bigger picture. The others sound like a complete waste of time who have made things difficult.

He is right quality of life is paramount. I’m so glad you’re experiencing 90% less pain , that is a wonderful achievement.

He does sound like a good doctor, he isn’t scared of making the right decision and in doing so he’s improving your quality of life.

Well that has cheered me up PRMpro . I am very happy for you and relieved you have a great doctor.

I was thinking I might book a private consultation with Dr Mackie in the spring. It’s a long trip but worth it.

Take care and may things only get better because I’ll tell you something, you deserve some good quality of life , you really do .

With thanks to Dr Christian.

xx

[PMRpro Ambassador in reply to Greensleeves]

Sorry to disappoint but Sarah doesn't do any private work. Rod Hughes in Chertsey is the next best for listening and looking at the overall picture.

Having said I have got rid of a lot of pain - this morning is not good!!! If I sleep badly the first half hour or so in the morning is awful, different pain though, I have some really bad nights - spoke to my GP and all she was prepared to condone was herbal stuff. It doesn't work and I feel hungover next day! Been doing "dry January" instead of Lent for a change - and it hasn't improved my sleep!! Don't think it is worse but certainly isn't better! So I shall resume my single glass of wine with dinner!

[Charlie1boy in reply to PMRpro]

Certainly, in answer too your last sentence!😂

[Greensleeves in reply to PMRpro]

Thanks for letting me know, I’ll try Rod Hughes. I wonder if I could email Sarah and she’d see someone from a different area .

Sorry bad sleeping instigates more pain PMRpro , Magnesium is helpful for many people.

The herbal sleeping aids and antihistamine’s do make you feel rough in the morning, like a foggy hangover.

I take sleeping tablets when having a bad night, like you , I can guarantee a bad night will result in pain the following day .

They don’t cause any grogginess, doctors are reluctant to prescribe them , I have them on repeat and only use if I’m still wide awake at 2am . I also find using a weighted blanket and listening to an audio book helpful.

A glass of wine with dinner sounds perfectly reasonable. xx

I

[PMRpro Ambassador in reply to Greensleeves]

One lady from Kent was able to get referred to Sarah (who recognised it was ankylosing spondylitis not PMR/GCA) but it was several years ago and some hospitals refuse out of area referrals these days because their waiting lists are so long - and Sarah's are LONG since she only works for the NHS part-time and does research the rest of the time.

A weighted blanket doesn't appeal - I have very lightweight summer duvet or my legs feel trapped!! But the new investment of an electric blanket (for visitors more than me) is good used BEFORE getting up!

[Greensleeves in reply to PMRpro]

Thank you for letting me know, she sounds like such a good rheumy , I’m glad someone like her is working in the research field too .

I’ll try Rod Hughes , I will mention it next time I see the GP , which is rarely.

Thank you PMRpro take care xx

[Odosmum in reply to PMRpro]

Excellent advice (as always) PMRpro. You've saved me a lengthy post 😁

[Flivoless]

Parsonage Turner? I think he was in my class at school. - I'll get me coat.

[Sophiestree in reply to Flivoless]

🤣🤣🤣

[DorsetLady PMRGCAuk volunteer in reply to Flivoless]

Boom, boom, tish….😊

.. or a village in Midsomer Murders…

[PMRpro Ambassador in reply to DorsetLady]

Or Dorset - Whitchurch Canonicorum, Wooton Fitzpaine and Catherston Leweston spring to mind ... Wasn't familiar with the last though!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

No nor me -but we have loads -and a lot sound like Shakespearean actors darling!

Often think that as I drive around -“have you seen Melbury Bubb’s Hamlet or Toller Fratrum’s King Lear, not to mention Kingston Maurward’s Othello”?

🙄

[PMRpro Ambassador in reply to DorsetLady]

Ooooh - just looked where they were and saw Haselbury Plucknett!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

There probably one you shouldn’t look at -it’s near Bere Regis as apposed to Lyme Regis and begins with S..

Some delicate souls think it should be renamed, but locals won’t have it!

[PMRpro Ambassador in reply to DorsetLady]

Hmmm - incomers maybe????

There is a place off the A1, Shilbottle, The "l" lends itself to black felt tip pen art ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

More than likely....

[Pixix in reply to PMRpro]

I have a friend who lives in Haselbury Plucknett!!!!!

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

Another fine Shakespearean actor…. 😊

[Pixix in reply to DorsetLady]

Absolutely!!

[Greensleeves in reply to Flivoless]

Do get your coat , it isn’t funny to feel so low and desperately looking for answers .

[Flivoless in reply to Greensleeves]

Sometimes a little light humour helps. Sorry if it didn't for you.

[Greensleeves in reply to Flivoless]

Light humour does help, I was searching for the cause of the initial pains over 11 years ago, which were like electric shocks.

All that came up was Parsonage Turner syndrome. I too thought it was a funny name for an illness and immediately thought of the parsons nose .

Nevertheless I wondered if I’d had that and not PMR , it could have been diagnosed by an MRI .

I can’t understand why I still have this wretched condition, the rheumatologist did say younger people tended to have a longer lasting illness. I don’t post much, only when desperate, my younger brother has a degenerative terminal condition, I feel fortunate I’m suffering with this and not with his illness. Even hospital consultants have ridiculed , “where’s my Pred”.

I can’t bear to read some posts and people’s fears and suffering. I try to offer advice, unfortunately this past few years my focus has been on my mum and brother.

I do normally have a very good dry sense of humour, it doesn’t feel appropriate to make light of someone’s anguish.

No harm done but it will make me more wary about posting.

[DorsetLady PMRGCAuk volunteer in reply to Greensleeves]

Sorry if these comments have hurt you in any way, No one is making light of your suffering -but of the names.. so please don't be wary of posting -we are here to help..

[Greensleeves in reply to DorsetLady]

It’s okay DS , I’m just very low at present and do agree it’s a ridiculous name.

If I did have that , I’d keep it to myself.

I always feel this is a safe place and share things here that I don’t with others.

I know you’re a very lovely lady and I do view these people as friends, nobody else understands PMR or GCA , like the people who have experienced it or who have it . xx

[DorsetLady PMRGCAuk volunteer in reply to Greensleeves]

It is a safe place -and that’s probably why we feel we can show a humorous side as well as a caring, concerned one. I know I’m very guilty of doing that -and it has got me through some very difficult times but I do understand that not everyone appreciates nor understands my humour -on this forum or off it..

Best wishes 🌸

[Greensleeves in reply to DorsetLady]

Best wishes DL , please do continue funny place names. There are some hilarious one’s . We’ve taken photos of the names while passing through.

Best wishes xx

[AtopicGuy]

Parsonage Turner Syndrome (PTS) is just one of many rare neurological disorders than can mimic the symptoms of PMR without the usual accompanying blood markers. The electric shock sensations are an important clue that your nerves may be affected. Many of these disorders are autoimmune, which might explain why you get some relief from steroids (especially IV dexamethasone, which is 5 or 6 times more potent than prednisolone, at the same dose). Peripheral neuropathies require much higher doses of steroid to control than PMR, so other immunosuppressants are often used, too.

[Greensleeves in reply to AtopicGuy]

Thank you for your welcome advice.

I had the electric shock like pains a couple of times before the stiffness and “typical”shoulder pains .

Once the stiffness , shoulder and hip pain started I only experienced them around a further 5 times . They would start after a sudden movement, for example if I quickly moved my hand away , it would cause these excruciating pains bilaterally.

I never had them again from 2012 onwards, they appeared to be the precursor to the “PMR” pains . I was trying to explore if anyone else had experienced this and read about Parsonage Turner .

I wish I hadn’t posted in the first place as it was amusing to some , but for me to post anyway, is a sign of my anxiety.

I find it crazy I’ve still got PMR, if that’s what it is or was . The stress levels since 2010 have been overwhelming with two very precious family members being seriously unwell.

I’ve lost mum now, the grief seems even harder to bear. My mum and I were very co dependant , she was only 17 years older than me and I didn’t have a father, so it’s been a devastating loss . I’m still caring for my younger brother who has Huntington’s disease.

I was able to reduce to 2mg pre Covid , but it’s impossible to reduce further than 7.5mg .

The dexamethasone was wonderful. A week later I felt reborn , until PTSD and Long Covid appeared out of the blue after the hospital stay , which was quite terrifying with Covid in 2020.

I thank you for explaining this to me and taking the time to reply. I would rather have PMR than a rare neurological disorder to be honest.

I have had further autoimmune conditions come to light this last year.

Best wishes.

[AtopicGuy in reply to Greensleeves]

I'm sorry you are having such a hard time. Stress, and lack of sleep and/or rest, are known to make many symptoms worse. It can be a vicious circle.

[Greensleeves in reply to AtopicGuy]

Thank you, it is all a vicious circle, we’re going around in circles sometimes with these things. I guess it’s something I’ll never know and have to deal with the here and now.

I thought PMRpro’s advice on taking a holiday was very helpful.

It’s a break and a chance to reset . All these awful winter viruses are putting me off .

Once again thank you for explaining PTS to me , it was very helpful.

Of course I’d started taking the Pred when the electric shock pains went, but I was able to reduce to 2mg and look after my family and grandson until the pandemic started and I caught Covid. I did also read Covid has caused many autoimmune conditions.

I won’t Dr Google again , you initially do it for reassurance but usually feel a thousand times worse.

Take care