Newbie

Hello, I am waiting for a diagnosis possible PMR. In a nutshell, I was diagnosed bursitis, OA in L shoulder, L wrist and hand around 12 months ago, and had odd days of when I felt I had a mild virus. Over the past six months and more lately with quick onset consistent pain in R shoulder, radiating down upper right arm, pain and stiffness in outer thighs and increasing pain lower back, recently has extended to my neck. Fatigue has increased almost daily, comes in waves and general feeling of ill health. Difficult to explain / describe to lay people, it is not tiredness, it’s like being absolutely pooped and low mood too. Difficult to turn over or even move in bed sometimes, nights very much disturbed, poor deep sleep. Sometimes wake in the night feeling I have been hit like a bus!

I am a 49 (nearly 50), female, my late father had PMR with long term pred.

My past medical history is hypertension, Graves Disease (thyroidectomy 1996).

I am waiting for results of bloods / markers and concerned that if within normal limits I will get fobbed off!!

Can’t carry on like this though, it cannot normal to feel like a 99 year old at 49!!’

The only symptom I don’t have is weight loss (I have a normal BMI).

Interested to hear from others who may understand my current pickle!!

[piglette]

Do you think you could talk your doctor in to letting you have a one week trial of steroids?

[Hidden in reply to piglette]

Hi Piglette, thanks for your reply 🙂. That’s a really good idea! I have read that pred = quick results. I can’t imagine feeling “normal” without any pain!! Thanks for this advice, I will pursue 🙂

[piglette in reply to Hidden]

If it really works it is like a miracle.

[Hidden in reply to piglette]

Fingers crossed 🤞🙂

[PMRpro Ambassador]

I bet you get more problems getting diagnosed from being under 50 than from normal blood markers!

I didn't lose weight either - I gained from inactivity and comfort eating. I was 51 when it started.

It's unusual for shoulder problems to be ascribed to OA - did they x-ray it for evidence or did someone waggle it and announce "I can feel it!" which a rheumy declared about my knee. 13 years later the x-ray showed nothing.

They do need to also rule out thyroid problems because that can cause very similar symptoms. But I don't think 20mg of pred would relieve that - it would probably leave you feeling a lot better if it is PMR.

[Hidden in reply to PMRpro]

Hi PMRpro, yes I am in a strange way hoping it is PMR and nothing else. GP has refused to X-ray my R shoulder staring little point in it as it won’t change the symptoms. Had my thyroid removed early 20’s, was very poorly with it. Now managed well on thyroxine and so I would be surprised if it’s related to that. I have read it can be generic though, my poor dad suffered badly with it and was diabetic so had to juggle meds.... I Can’t get a face to face with my GP, telephone apps only, Covid has become a good excuse for everything these days! I have left things far too long for fear of burdening the doc with anything non Covid related! You were young also when you started with PMR, I hope things are better for you these days?

[PMRpro Ambassador in reply to Hidden]

I've learned to live fairly well with it - I'm lucky in the sense I have 3 doctors who accept quality of life is all and who don't nag me to get the dose down when I can't.

The x-rays might not change the symptoms - but they just might shed a light on a different cause. And this refusal to see patients f2f is ridiculous. My daughter in Scotland has seen a GP f2f I think and here in northern Italy they have seen patients f2f all the way through - albeit with telephone triage. Even our dentists have worked right through, emergencies only for a month but after that, normally.

[Hidden]

That’s good news that your doctors take what sounds like a holistic approach to quality of life and help you achieve best health and well-being as is possible. I am hoping for an outcome tomorrow, and if I begin to feel 50% better over the next few weeks then that will be a good result! Gosh, can’t even get a check up at the dentist at the mo!! The new world!!

[Loyd]

It’s not sounding good for you. For what it’s worth I was pretty much the same 18 months ago and the Doc gave me a shoulder X-ray which showed some OA but I knew all the pains everywhere couldn’t be from that! Anyway first bloods showed some inflammation but second tests were negative so the Doc changed her mind and decided not to proscribe Pred. Upsetting. I had a friend on pred for another ailment and she suggested I do a self diagnoses with 15mg for 7 days. Miracle cure in 48 hours!! Had to go back to Doc and fess up - she agreed that I had PMR then. I would seriously ask your Doc for a weeks trial - it will confirm it one way or another. Good luck - you can’t go on feeling so bad.

[Hidden in reply to Loyd]

Hello Loyd, thank you so much, you’ve made me feel more hopeful this morning. I picked up my blood results online last night and they are both normal, stating “no further action”! I even start to wonder if I’m imagining it all!!! Well, I’m waiting for a call back from the docs this morning and will ask for a 7 day trial of pred.

[Loyd in reply to Hidden]

Your Doctor may not be aware that about 20% of us with PMG have no inflammation markers in blood tests. The only real diagnoses is a trial of pred. If it’s some other condition pred won’t do much for it. Good luck and be firm! 👍👍👍

[Hidden in reply to Loyd]

Hi Loyd, thank you, I did mention this to the GP this morning but she is adamant not start pred, or didn’t want to listen, and that as I’m under 50 (50 in Nov!) it’s unlikely to be PMR. I will have to get through to Weds and will give it all I’ve got at the appointment. 🤞🙂

[Loyd in reply to Hidden]

Keep us informed - they can’t just leave you to suffer. You may have to change your doctor. Thinking of you.

[Hidden in reply to Loyd]

Thank you very much Loyd, I will let you know how I get on. The lovely supportive people on this site is keeping me going 🙂

[Jura1959]

Excacly how mine started 4yrs ago infact mine started off as being treated as a frozen shoulder but after several weeks of physiotherapy it began to get worse so bad it took me almost 3 hours to get out of bed and struggle to dress myself could bearly move so now on the journey of pred trail but what you describe sounds very much like pmr 😪

[Hidden in reply to Jura1959]

Thanks J1959, I have just spoken with the GP and won’t px me pred in case it masks another condition. At least have been offered a face to face appointment on Weds so that’s something! Oh and a call from a physio tomorrow morning!! Like that is going to help! Lol!

[PMRpro Ambassador in reply to Hidden]

Physio often makes it worse!

We had one lady on the forum sometime back who had had a Takayasu's arteritis diagnosis for some years. Shortly after her 50th birthday she noticed the diagnosis had been changed to GCA and asked why. "You are over 50 so now it's GCA ..." They ARE very similar in terms of histology but Takayasu's is GCA++ with severe effects due to large arteries being more involved and causing organ effects. I couldn't believe it!!!

[Croft9232]

Hi CF2020

How frustrating for you, so sorry... You are 50 in a few weeks, is she saying then that she will consider its PMR when you are !

A weeks Pred would be such an easy option for her to prescribe . In my case and many others on here ,it was relief in hours! after taking the first dose,

Hopefully with a face to face on Wednesday you can talk her round.

Margaret.

[Hidden in reply to Croft9232]

I hope so Margaret 🙂

[Loopy65]

My understanding is that a trial week or two of steroids can’t harm and if it works then it’s probably PMR! .. not sure why some docs are unwilling to do this when all the obvious illnesses have been ruled out!

So very grateful that my GP said it straight away, my markers were raised and she thought I was a tad young but she was willing to give it a go.

[PMR2011 in reply to Loopy65]

When you see your GP take the time to describe how your functioning has reduced. It had more impact when I said I needed assistance to get out of bed, my husband had to tie my shoes and I was unable to bend over to pick up a fallen object. I was 51 when diagnosed. The magic age line that PMR doesn’t cross is actually a porous wall. You will have to advocate for a Pred trial, but it’s good practice in advocating for ourselves throughout this illness! Best.

[Hidden in reply to PMR2011]

Thank you for this. I am not suffering as much as you have described prior to your treatment, although if I do have to bend down / kneel down onto the floor I have to think about how I’m going to get up again! I describe my current quality of life in terms of , not so good days and worse / bad days. I guess it will be a case of watch this space! Your advice is much appreciated thank you 😊

[Viv54]

Hi, ditto to most of the above !.I have PMR , this is my second flare but this time more excruciating back and legs pains to the point when it literally stops me in my tracks ! I have other related problems but this has to be the worst !.I'm now down to 30 mgs of pred from 40 .My Dr has given my a weekly pain patch which is taking the edge off. I have been 5 weeks in acute pain , it's starting to ease. Chin up make sure you get the right answers and medication. There is hope 😊 Best wishes Viv .

[Hidden in reply to Viv54]

Hi Viv, glad it’s starting to ease. I think that I have been taking pain for granted as like you I have suffered with various health issues and muscular skeletal probs over the last 20 or so years with disc bulge in lower back and OA / bursitis and so you tend to think oh well it’s just the way it is. But this is different isn’t it, with the feeling so unwell and chronic aches and pains that you suddenly realise this is not normal!!!! And time to try and do something about it. I cannot imagine having to struggle this way for the indefinite future, even simple household tasks so difficult! Even getting down to sit on the loo so painful at times!!! It’s ridiculous!! 😬

[Viv54 in reply to Hidden]

Yes, it's almost like you live with the pain until some warning bell goes off !. My health problems are similar to yours, Atm I'm all about pain management, just taking it one day at a time !.I had a good day today ,first in ages !.it can be done !. You will get there 😊

[Hidden in reply to Viv54]

Aw, that’s lovely that you have had a good day 🙂. Long may it last! I hope you have an equally as good day tomorrow. I will do battle with the GP on weds and hope to come away with some pred, won’t hold my breath though...😬

[PMRpro Ambassador in reply to Viv54]

Are you under a pain management clinic? Usually they are better than ordinary doctors because they have a different view on it all - pain relief and quality of life are important, however it is achieved.

[Hidden in reply to PMRpro]

I was under a pain clinic around 8 or so years ago and had some spinal steroid injections for prolapsed discs, they were monsters and gave me no anaesthetic at all! I am probably a wimp! However I went on to have the same in a different hospital with anaesthetic!! I have since moved and so would come under a different CCG and hospital and so maybe pain clinic might be a good route forward, I will discuss at my app on weds, thank you 😊

[PMRpro Ambassador in reply to Hidden]

Worth trying - they have a very different ethos here and I love my pain clinic appointments even though the current anaesthetist isn't anywhere near as good as the original one. But she achieves a fair bit

[Viv54 in reply to PMRpro]

No, it's between my Dr and I she's really good and listens to you ! So I will see how things work out. Feeling positive today .

[Viv54 in reply to Hidden]

I should of said , if your Dr is any good you should get Pred, fingers crossed it helps .

[Hidden in reply to Viv54]

Re the pain patch, glad it works for you I was trialled on Butrans around a year ago, it made me so ill I had to remove it!! Never again!! Must be sensitive to opiates. Tramadol and Gabapentin all trialled years ago and similar side effects. Co codamol takes the edge off though, and the odd diazepam helps too 🙂

[Viv54 in reply to Hidden]

It is Butrans not had any side affects so far. Can't take Tramadol or Gabapentin , they were really awful for me .

[PMRpro Ambassador in reply to Viv54]

Is it for PMR pain or something else? Even opiods don't usually help with PMR.

[Hidden in reply to PMRpro]

Hello, I’m not sure if the co-codamol is a bit of a placebo to be honest!! I only take it at bed time and may help me get off to sleep. Was originally px’d for my back. It doesn’t stop me waking though in the night though stiff as a board/ in pain/ can’t move etc... I have noticed on here that wakeful nights are very common, I suffer with this too. Good news though, had a t/c from a physio this morning who took a really good comprehensive history and is to support my request for a trial of pred and referral to a rheumy. GP app tomorrow morning 🙂🤞

[PMRpro Ambassador in reply to Hidden]

Sounds promising!

[Viv54 in reply to Hidden]

Great let us know how you get on .👍

[Viv54 in reply to PMRpro]

Yes, the patches are for something else. The steroids are helping my PMR . I'm on a tapering plan as don't want to be on 40 mgs of pred longer than I have to, my consultant and Dr are helpful , I'm starting to take action as been going on for what seems to ages in acute pain. At last I feel I'm in the driving seat .

[PMRpro Ambassador in reply to Viv54]

That's OK then - some doctors offer them for PMR and it is a waste. 40mg is high for PMR so you should get down to 20mg at least fairly easily.

[PMRCanada]

My PMR started in my knees and thighs/hamstrings and worked its way up to one shoulder, then both, over 5.5 months before I was diagnosed with PMR. Given your genetic history with your parent, I would think your diagnosis would be more straight forward. Hopefully your bloodwork/markers are in line with your symptoms, and that is the focus rather than your age.

I would insist on a 7 day trial of pred (20mg), and pay attention to the results. It was my quick response (pain relief) from pred that confirmed my diagnosis with GP.

You are suffering and need/deserve some relief...and your medical team should recognize and support your need for intervention. Frustrating, I know, even more so during Covid times. I haven’t had a f2f appointment with my GP for 7 months (phone call only), and am waiting on my annual dexascan as it is not “urgent”. Hubby has been waiting for shoulder X-ray and ultrasound since early May. Got into see dentist but only manual hand tools used for cleaning...no polishing or any procedure involving water (sigh)...so I get your frustration.

Let us know how you make out, and in the meantime ask us anything. The forum is filled with supportive folks with a similar lived experience.

[Hidden]

Hi there, I was prescribed 15mg pred by the GP today for a 5 day trial, started them this morning. Hoping to see some improvements soon 🙂