New diagnose ?

[Illie]

Hello all,

I’m new here, I am 49 years old and my rheumatologist is suspecting PMR, I am having complaints of pain in bilateral thighs, knees and since last week my shoulders, it seems that my left shoulder is hurting me the most at the moment, but it varies, some days I’m having back pain.

In the beginning I had much pain in my groins and that still hurt me now , my forearms are starting to hurt as well .

I never experienced pain like this, some days it feels like I have run the marathon the day before. My complaints started February March this year, I had covid all January, I work on a covid ward, and when I returned to work I noticed pains but I thought it was covid and that this was part of my recovery. I have to say that in December I had slightly pain when I sat down in my bottom...it felt it was my joints but I ignored it for a long time.

So in February March my symptoms gradually increased , 15 March I made appointment with Gp, I saw a ANP, cause Gp isn’t seeing anyone due to COVID-19.

This ANP thought it was arthritic pain so he referred me to physio, 3 weeks after I had an appointment with physio , at that time I was in so much pain and was taking naproxen, cocodamol and nefopam what diddnt seem to help much.

The appointment with physio diddnt go well at all, cause he let me know at the beginning that he didn’t had much time for me, I was agitated due to pain and told him that i thought he was very rude to say the least, anyway he examined me and said that he diddnt think it was arthritis because at that time it was only my thighs and groins and hips what were hurting me. He even questioned my knowledge about arthritis. I felt I was not been taking seriously and I still have that feeling now.

I suggested to him that I thought it might have been something post viral, he discussed this with the Gp and than Gp send me for some tests finally after 1.5 month, I had blood tests done, I got a lung X-ray? , and a ECG was done wich I thought was maybe protocol to exclude Covid-19 , I had to wait another week for blood results and my CPR was raised (. 87) . Dr wanted me to have a MRI pelvis to exclude Cancer I had CA in that area almost 3 years ago. Than one day I was in so much pain that my partner rang ambulance, I was doped up with painkillers that diddnt work and that’s how I ended up in hospital, they made x ray of pelvis and hips, a bit wear and tear on the right hip but this couldn’t explain my pain in both sides. MRI pelvis was done, again nothing acutely found. Blood tests showed increased CPR since the last one in 10 days it shot up to 120.

They referred me to rheumatologist and that’s where I am now, rheumatologist thinks it might be PMR, and requested a PET scan , I’m at home now, with a lot of pain, now they prescribed me with ibuprofen instead of naproxen and still have the cocodamol and nefopam, still in a lot of pain, off work and my mental state is not getting any better, I struggle to get out of bed, can’t sit in a chair Long due to pain in legs , can’t bend , can’t put my shoe or socks on, I’m sorry to complain like this but I feel like I’m living a nightmare. Thursday I have a appointment with a different physio , Gp referred me. Does somebody recognise these pains, and do you guys have some tip and do ‘s and don’t’s for me?

Thanks if you read this all ,

Regards pretty desperate

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Does sound suspiciously PMR-like...have a look at this post initially -

healthunlocked.com/pmrgcauk...

and then at the FAQs....located just below the first post on screen (yours at the moment, but that may change) or in the Pinned Post - which depending on what device you are using may be on right-hand side of screen - further down than related post and Supporting the Community.. or at the end of the posts.

have linked for ease -

healthunlocked.com/pmrgcauk...

[Illie in reply to DorsetLady]

Thank you for the links, in a way I’m happy to see that I’m not the only one with these symptoms, I read about someone who also started with pain in the bottom, I thought I was the only one with this weird pain. It helps to know I’m not the only one , thanks

[TheMoaningViolet]

HI Illie,

I am sorry you are suffering, but it does sound like you are seeing the right person now (rheumatologist) and the best diagnostic method is proposed (PET scan). I hope you are taking something to protect your stomach with all these pain killers you have been taking?

If your problems is PMR, it is at least a condition that has an effective treatment and hopefully, you will feel instant relief once you are prescribed the steroids. There are issues with the medication which I am sure you are aware of, but they can all be managed and you are already here where you will be able to find lots of information and ask any questions.

DL has given you a link to some useful information.

I suspect that the possibility of long Covid is something your doctors are thinking about and that is more of an unknown territory for them. If it turns out to be PMR, remember that in most cases it's a self-limiting condition that burns itself out after a few years (how long varies a lot) and the steroids are brilliant at controlling the symptoms and giving you a good quality of life in the meantime. I wish you well and hope you have some certainty before long.

[Illie in reply to TheMoaningViolet]

Thank you so much, I hope I can have the scan soon, can’t wait to start treatment, I’m off work so long, afraid of losing my job is not helping, thanks for your support!

[TheMoaningViolet in reply to Illie]

I remember how it was for me before I had a proper diagnosis. I was struggling to go to work as the symptoms were terrible in the morning (by 5 pm, I felt almost completely normal, which is the usual PMR pattern). I remember having to acclimatise to a standing position before I could start walking and the feeling of my legs being tied together while I walked. Unlike you, I felt normal when sitting down and the pain was never significant in my shoulders, but it was very insistently present along my spine and in my neck. I found Naproxen somewhat helpful, but once I started steroids, I was back to normal within a few hours.

I know it's hard to do, but try not to worry about your job and focus on making yourself comfortable. Hopefully, the PET scan will be happening soon - when I had mine, the results were available the next day.

🤞

[PMRpro Ambassador]

Hi, and welcome from me as well.

It does sound very PMR-ish but until the rheumy has seen the PET-CT scan results it isn't really possible to start you on pred because that would affect the results. It could also be part of Long Covid, they really don't know much about it yet, but to me it is obvious that Covid can trigger an autoimmune disorder and yours happens to look like PMR. Doesn't matter what triggered it though - PMR is PMR.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

You may find something in those links to help you wait out this period - as I describe, I had PMR with no treatment at all for 5 years and while I was never really free of pain, I did learn to manage it to be able to carry on life.

Have they said how long it might be? It might be worth contacting the GP to ask for disability aids in the meantime - a riser seat for the loo, one of those grabber things to pick things up and maybe a percher stool if you want to half stand in the kitchen. Make sure that anything you need when alone is out on the kitchen worksurface and it helps using a jug you refill a few times to fill the kettle for example. A trolley you can put things on to take them from one room to another downstairs is useful I found. I also found I could get dressed if I hurried and got my socks and pants on in the first few minutes after getting out of bed while I was still warm. I did aquafit in a warm pool - but doing stretches in a hot shower helps too.

[Illie in reply to PMRpro]

Thank you for your advise, I read your story and I can relate in much how you tried to manage, I’m lucky that it went quick with me I guess when I read your story of 5 years, 😓 couldn’t imagine that! The rheumatologist said it could take up to two months what immediately brought me to tears, I expected to be back at work next week or so with pred...Foolishly I rejected the need of aids , occupational therapist asked me if I could use anything for home, I think I was a bit in denial, the fact of being 49 and needing use of raised toilet gave me nightmares, but now I can see the benefits of it cause I am in agony sitting down on the toilet, but my sink is next the toilet so I use that to lower me down and pulling myself up to, my mind is not ready yet to accept a underlying illness like this but every morning I get more aware, what a struggle!

Thanks for your support and advise!

[PMRpro Ambassador in reply to Illie]

Hehe - I nearly pulled the washbasin opposite my loo of the wall in one house, and couldn't turn the door knob to get out either - we'd just moved there temporarily! The house before had had 3 toilets, ensuite and main bathroom and one downstairs. Having to do the stairs so much in the temporary house made things SO difficult. I could go to the loo and work or I could eat and drink. The door step was a typical terrace house one - I could barely lift my foot over the door frame.

So get hold of the OT again and tell them they were right.

[Illie in reply to PMRpro]

Haha, I see what you mean..good update is that I had my PETscan on Wednesday, I hope to get results soon, I’m thinking if it was urgent they would have rung me by now? Or am I too optimistic here? Today I’m having a better day, I could walk standing up today! This is the first day I could move with not too much pain, I guess it varies? Or am I getting better?

[PMRpro Ambassador in reply to Illie]

It can vary a lot - depending very often on what you did yesterday Good days are followed by a bad day because you did too much - and vice versa because you had to rest on the bad day!

[Illie in reply to PMRpro]

Ah! Yes that can explain some days 🤔

[PMRpro Ambassador in reply to Illie]

Hehe - it usually does

[SheffieldJane]

Oh dear god that sounds like classic PMR, the physiotherapist is less than useful, why on Earth haven’t they put you on a trial of Pred.? I guess they want to see the pattern of the inflammation. I hope you get the miraculous relief that Pred brings really soon.

[Illie in reply to SheffieldJane]

Thank you, I was wondering that too but than PMR pro replied that they probably want to see the scan first what I can understand, but I still think it is a bit inhumane to leave somebody in so much pain x

[MiloCollie]

Oh my you are in a mess. Sounds like you need prednisone. When you get up one day and don’t walk like Frankenstein you will look back on this and smile. I’m new to it but my advice is read this forum back to front and attack your gp and specialist until you get relief x good luck

[Illie in reply to MiloCollie]

Indeed, I hope I can smile soon ...x

[Uglow]

I do hope things get sorted I’m new to pmr and it’s a struggle my back is a nightmare but I do have a collapsed disc so it’s so hard to medicate because I’m on blood thinners too. Ibuprofen is best but I can’t take ! I have a couple of times tho out of pure desperation. I’m still waiting to see a rheumatologist, my Gp is helping me at moment. But I must say the minute I took prednisone the pains all went. Back was ok then ! I’m now taking 17.5 mg of prednisone it’s keeping the wolf from the door but I suspect I need a higher dose! My Gp wants me to stay on 17.5 so I’ll give it a few more days. My back is killing me still. Not the type of pain you can just put up with. It’s overwhelming.

Good luck moving on with your treatment.

[Illie]

Oh my god, I’m so sorry that you have to go through this, I don’t have a collapsed disk but I understand pain, hope your situation gets soon sorted!x

[cranberryt]

I just wanted to send some encouragement. I agree is sounds a lot like PMR. My situation was a bit similar. Spent a month at physio before my GP ran some additional tests and gave me the PMR dx. At least your care team is willing to diagnose PMR at age 49. Here in the states they will not. The good news is that once you’re dx and start prednisone you may feel better in hours or overnight at least to the point of needing functional. Then it’s matter of managing the lowest possible dose to handle your pain. I just wanted to send some encouragement that although life may need to slow down while PMR is active, you can get back to work quickly once the pain is managed!

[Illie in reply to cranberryt]

Thank you! I had the feeling in the beginning that Gp has not done a great deal for me really, but now when I read all your reactions I guess I’m being pretty quick helped, I just get so down because of the pain, I’m so looking forward to treatment so pain goes away! X

[Pangolin43]

Hi lllie,I had pains very similar to yours and after many weeks and explorations my rheumatologist diagnosed PMR induced by long COVID.

It was such a relief after living in such agony to finally have a diagnosis and take 15mg Pred which made a difference. I was diagnosed in March but pain began in November.

I hope you find the treatment you need soon.

Best wishes