Does it sound like PMR?

[Liljeblad]

I have been to several specialists, but no one understands what is happening to me, their eyes always ends up swimming in their faces.

After countless hours googling, I found this forum a could finally recognise things you have described here.

I woke up with excruciating pain after a parathyroidectomy in my back (trapezius-muscles) and shoulders in 2021 and has never recovered after that.

My muscles capsuled me in like an armor. I could not breathe properly, because my chest wouldn’t move, I could not walk because of stiffness and pain, I could not sit, put on my clothes and so on. I didn’t function at all. I became a prisoner in my own body.

The fatigue, stiffness and pain pinned me to my bed

I tried to go for a short walk each day , but even that was too much. At the age of 56, my husband had to take over everything, and I hade to give up work

Despite of negative blood tests, my GP agreed to try out treatment for PMR and I started at 15 mg prednisone, but increased to 25 in aug 23. I am now down to 10.

I can still not work, but the improvement from where I was in August gives me hope.

After beeing isolated from social life for over two years, I can finally start living again, even though I am still suffering from pain a fatigue and must be very careful with the amount of activity. I do Yin Yoga and som cross country skiing now.

The rheumatologists in Norway, where I live, are conservative, so I need to bring with me some good arguments and descriptions of others experiences with PMR. I don’t even know if I have the energy to see yet another specialist now.

I know there’s a thread with your stories about how your PMR starter, but I can’t find it.

So, finally to my question: Does my symptoms seem like PMR? I live in a body where som muscle groups seem to live their own life.

Finally I have to thank you all for this fantastic forum!

[DorsetLady PMRGCAuk volunteer]

This link from the FAQs gives lots of info -including others stories -

healthunlocked.com/pmrgcauk...

Start there -and then maybe have a browse through FAQ s at your leisure

[Liljeblad in reply to DorsetLady]

Thank you for responding so quickly. My physiotherapist admits she knows nothing about PMR, but she is curious, so now I can give some information.

[DorsetLady PMRGCAuk volunteer in reply to Liljeblad]

Also have a look at this then -there might be bit in there also useful for her -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk...

is a compilation I did some years ago

[Liljeblad in reply to PMRpro]

Thank you so much! I have some atypical symptoms, and it’s so useful to read how others has experienced getting PMR.

[PMRpro Ambassador in reply to Liljeblad]

In our experience, what rheumies claim are atypical symptoms are actually pretty common!!! What are yours?

[Liljeblad in reply to PMRpro]

Stiff and painful upper back, hips, lower legs, ribcage, neck (all the way around) , shoulders, upper arms and upper chest. All on both sides.

My upper back feels more like a board, than an elastic back, which makes it impossible to rest in a recliner.

I wake up at least once a night because of pain in shoulders and hips. I get better when moving and worse by resting, but if I do to much, the pain a stiffness increases. And I must not forget the fatigue.

After what I’ve read in this forum it behaves like pmr, but my CPR is fine.

[PMRpro Ambassador in reply to Liljeblad]

So was mine - the only time my CRP rose was on a day when I had a bad atrial fibrillation episode.

All sounds very PMR-ish BUT has anyone done an MRI to look for any signs of ankylosing spondylitis - because your back symptoms and the improvement with movement could fit that too, especially with the nighttime pain. A PMR-friend eventually got an admission she MIGHT have had GCA too - her symptoms sounded very like yours but her tongue was also affected. In the end she travelled from Kent, in the south of England, to Leeds, in the north, to see Sarah Mackie. She happened to mention night time pain at about 2-3am, earlier than typical PMR pain, and Sarah picked it up. Sent her for an MRI and it was solved: evidence of ankylosing spondylitis. It is a bit different in women and the changes may be very subtle until late in the disease process.

[Liljeblad in reply to PMRpro]

My new fysio has mentions Bechtrews, which I think is the former name for ankylosing spondylitis. I will talk to her about that, Thank you for a good advice

I got a bit nervous when you mentioned the tongue. I also have a sore tongue on the left side and a very painful scalp in addition to facial pain. Some times I can’t lay down on the pillow because my scalp hurts so much. I have thought that came from my stiff neck.

[PMRpro Ambassador in reply to Liljeblad]

Yes, that's right, they call it that here in the German speaking part of Europe. Interesting your physio is thinking along the same lines and I think it does need to be ruled out - or in. Has advantages over PMR, there is a choice of biologics to manage it!

If the cervical spine is affected by the AS, then the blood flow in the neck can be compromised and cause similar pain and symptoms to GCA. It all builds up ...

Do tell us what conclusions they come to.

[Liljeblad in reply to PMRpro]

It’s comforting to know that other things can mimic GCA. I do get nervous sometimes, when I can’t lay my head on the pillow at night, but I don’t suspect GCA.

I’m seeing my fysio nest week and will keep you posted.

[SheffieldJane]

The bit that puzzles me a little is the nature of your operation leading to extreme back and shoulder pain. Presumably your operation was on your neck? A GP once suggested to me that I may have been resuscitated during my operation. I did not question this statement, I was a young teen and “ doctor knows best”. It is only now that I think how odd that was and it has never been mentioned since. Your description of the extreme pain and stiffness in the back and shoulders and finding it hard to breathe all fit my symptoms at that time. I felt as if a great weight was on my chest. My operation was gynaecological, so nothing directly connected to back and chest pain. I wonder if somehow we were injured during our operations?

Any severe stress or trauma can trigger PMR-like symptoms. Most of us have back stories of bereavement, insoluble work stress, illness, injury and other factors before the onset of PMR. In my case, I was caring for my mum with frontal lobe dementia as well as discovering and dealing with financial irregularities in her financial accounts, perpetrated by another family member. The stress was unrelenting and very painful.

Your symptoms do sound very much like PMR, the pains are initially, atypical I would suggest. Your response to steroids is almost conclusive. The debilitating effect of PMR on your life is spot on. It maybe that the vague looks on your doctor’s faces can be explained because you don’t exactly fit the typical aetiology for PMR, the location of pain etc.

The point is, you are affected as if it was definitely PMR and doctors have found a medication that works. You have separately understood about tapering Pred. and pacing your activities. So you are in a good place unless doctors are fighting you over steroids. I hope some of this is helpful in understanding your condition and what may have triggered it. Stick with us. As you have discovered this is a very supportive website with lots of up to date information being shared, all the time.

[Liljeblad in reply to SheffieldJane]

Yes, thank you so much for your answer. I find it very interesting and helpful

This group has almost saved my mental health. All the good advices and help they all provide here has helped me a lot.

I have a theory regarding stress and surgery. Having surgery is traumatic to the body, regardless were they cut. And if we are exhausted by stress and illness prior to the operation, this could be the trauma that triggers the PMR. It would be interesting to know if there are others out there who have experienced PMR triggered by surgery.

[PMRpro Ambassador in reply to Liljeblad]

I'm sure there are - but you'd need to start a new thread and ask the question because of the way HU works.

[DorsetLady PMRGCAuk volunteer in reply to Liljeblad]

Ditto to PMRpro’s comment.. she and me [not good English, but you get the gist] are only ones guaranteed to see this … others may .., but not many.

[random901 in reply to Liljeblad]

Hi Liljeblad! I had excruciating pain on coming around from a general anesthetic after my aorta was reinforced via open heart surgery following an aneurism. Every kind of pain killer was administered, and I got the impression the medical staff didn't really believe the amount of pain I was in. And it went on for months.I am convinced that this was the start of my PMR. Undiagnosed GCA was the probable cause of the heart trouble in the first place! I hope you find this group as wonderful and reassuring as I do 🌻

[Liljeblad in reply to random901]

I am so glad I found this group! At the same time it’s so sad to see how many we are who suffer from so much pain and have to struggle to be believed and understood.

Your experience sounds exactly like mine. The surgeon and the other doctors told me that it was not possible to have so much pain after my kind of surgery, and certainly not to get all stiff and achy afterwards. After over two years of research I finally found a diagnosis I could recognise and that’s when I found this wonderful group. What a relief!

The posts helped me understand more and most importantly, I found a language to describe my condition to my GP and get treatment.

I hope you are coping well and thank you so much for sharing 😊

[DorsetLady PMRGCAuk volunteer in reply to Liljeblad]

….it’s so sad to see how many we are who suffer from so much pain and have to struggle to be believed and understood.

But you must remember that this, or any other health forum is mainly used by those who are having problems. So in a way is not always a true reflection of what is actually going on in the world of PMR/GCA.

Those that get through their illnesses with little or no issues don’t need us - and whilst that’s good for them, it does have the habit of portraying the illnesses and the treatments as all doom and gloom.. and that’s not necessarily so!

[Liljeblad in reply to DorsetLady]

You’re absolutely right, of course.

Reading about PMR on other websites gave me the impression that it was easily treated with prednisone. My GP told me so too, but now I’m prepared if it takes longer.

I am very impressed with this forum. The content is very informative and you admistrators are doing a fantastic job, keeping threads and comments to the matter.

[DorsetLady PMRGCAuk volunteer in reply to Liljeblad]

Well we do try and make it realistic -which as you say some doctors don’t.

PS - for many it is easily treated…but as knows not everyone

[susanspurs in reply to Liljeblad]

Hi Liljeblad

I had major bowel surgery in December 2012 following a bowel infection - I’m lucky I’m still around. Had complications and was in hospital for five weeks. At the time I was also carer for my disabled mother with dementia. Up to that time I was a fit 66 year old. The aches and pains seemed to creep up and by February 2014 I could hardly walk. Finally started prednisolone 25mg around March 2014. It was amazing - I could fly, didn’t need sleep (which was handy as I was downsizing after 40 years in a large house). I’ve been stuck on 5mg for years but now have many problems such as dreadfully thin skin (awful wounds) and now osteoporosis. With Dorset Lady’s help I’ve started to reduce from 5mg. I have refused methotrexate. I also have peripheral neuropathy which started post op too. Very bad now. So a long message to say that I believe my infection and bowel resection caused my atypical PMR and idiopathic peripheral neuropathy.

[Liljeblad in reply to susanspurs]

10 yrs on pred! No wonder you suffer from bad side effects. I really hope you succeed in reducing the dosage without to much trouble. You must be exhausted.

Best wishes and good luck 🌺

[susanspurs in reply to Liljeblad]

Just read your original post again. You really have been through it. Awful. Wishing you all the best.

[Hidden]

Have you been reviewed recently by an endocrine specialist to check all is well with your calcium metabolism?

[Liljeblad in reply to Hidden]

Yes, I have Hashimotos and is beeing checked regularly by my endocrinologist. High calcium was the reason I had the parathyroidectomy. He checks everything.

[Hidden in reply to Liljeblad]

Have you had to take calcium supplements or do you have enough parathyroid function to manage without?

[Liljeblad in reply to Hidden]

I only removed the one gland which had an adenoma. There are four of them left so my calcium levels are back to normal.

[Pollyone in reply to Liljeblad]

Hi there. I’m 3 months into steroids for PMR although my GP doesn’t think I have it but a good response to steroids within a day to me confirmed it. Phone appointment only! (Initial dose too high tho at 30 mg). Raised CPR etc and classic aches diagnosed by a Physio visit due to very stiff neck. The symmetrical aches in shoulders and hips came later. Having to do a lot of groundwork to request meds etc as a Rheumatologist NHS appointment will be in August 2024. Privately saw a Consultant as I wanted to discuss options if I get GCA as steroids really affected my blood pressure. I’ve had an TIA and don’t want another. Anyway that aside I had a single shingles jab a few weeks before symptoms and believe there can be a link. Flu and Covid jabs together too may have started inflammation. Aches are again reappearing and I’m trying to taper at 10 mg but taking it slowly as advised. It’s a difficult situation to manage as we are all different. I’ve gone from being fit and healthy attending a gym regularly and helping with a baby grandchild to having difficulty with stairs etc and buying a walking stick. I am now having to pace myself. I think I have bursitis in hip now which can also be connected but at a bit of a loss with my current iGP. I have requested an X-ray as suggested by Consultant - I think she saw I was limping although I didnt mention it. Just to rule out / in osteoarthritis I think.

I wish you well with your diagnosis. Unfortunately we need to find out as much as we can to help look after ourselves.

This forum is great for info as I knew nothing of the condition. Also attending local support meetings where available can be informative with talks given by healthcare professionals can inform.

Last week a friend of my daughters mother developed GCA overnight and lost the sight of one eye with no prior warning. I’m amazed more is not known about this related condition that seems to affect those older. Let’s hope more research can raise awareness.

Good luck with your treatment.

[DorsetLady PMRGCAuk volunteer in reply to Pollyone]

When you are diagnosed with PMR -you should warned of the risk of GCA…

If you look at charity’s website and/or any other information on PMR the fact that GCA can be associated with it is usually mentioned.

Sight loss, devastating as it is (as I know) rarely occurs once on Pred (although it can in some cases) . It usually happens pre diagnosis -when there is no protection.

[Liljeblad in reply to DorsetLady]

Thank you! I will check out posts and links

[Liljeblad in reply to Pollyone]

It seems like several apparently insignificant things can trigger pmr. Like you I have other issues as well and my level of activity is much lower than my mothers, and she’s 80.

I thought GCA was a very rare condition, so I was very suprised to read about it on this forum. Due to a severely stiff neck, I have many of the same symptoms, such as sore scalp, painful temple and eye pain, but since fysiotherapy makes it better, I don’t suspect that at the moment. I will however be very concerned if I notice changes in eyesight.

DorsetLady has just made me aware of GCA as well so I guess I have some reading to do.

I wish you all the best 🌺

[DorsetLady PMRGCAuk volunteer in reply to Liljeblad]

Maybe have a look at this -

healthunlocked.com/pmrgcauk...

Have to say, I’m surprised living in Norway you aren’t more aware of GCA/PMR -it’s more prevalent in Northern European communities… and we always blame the Vikings!

See this lighthearted look at that-

healthunlocked.com/pmrgcauk...

[Liljeblad in reply to DorsetLady]

Ai! I’m even born on the west coast with viking settlements in my neighbourhood. They have a lot to answer to. I’m so sorry 🫢

Before I started my own research on what could make my body hurt so much, I had only heard of GCA from an episode of Doc Martin. PMR was also new to me. Probably due to my CRP- levels not being high enough and also my intense neck pain not being a PMR symptom.

[DorsetLady PMRGCAuk volunteer in reply to Liljeblad]

Don’t apologise…. Vikings not all bad 😊. Doc Martin does get a few mentions on here from time to time…and many have had problems getting a diagnosis with CRP not being high enough…

[Pollyone in reply to DorsetLady]

Thank you for your input. Ha the Vikings! Good to know being on Pred already might help. This is a whole new condition I had previously never heard of. On occasionally mentioning it to friends (not too often as eyes glaze over as I look ok) it’s surprising how many know someone with it. At a Southend, Essex, UK meeting where we had a talk by a clinician there were around 50 people there. I think it must be increasing or awareness growing.

[DorsetLady PMRGCAuk volunteer in reply to Pollyone]

Hopefully awareness growing….thanks to the charity’s endeavours.

Maybe the information that you don’t have to be in your 70s to have it is also filtering down to some doctors … so anyone under that age isn’t automatically excluded. But as we know, a lot could do better in that scenario.