Help pleassssssssse: I seemed to have classic PMR... - PMRGCAuk

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Help pleassssssssse

Mike1964 profile image
89 Replies

I seemed to have classic PMR symptoms, chronic pain in neck, very sore tired muscles in shoulders, pain in lower back, my thigh bones ached so much it hurt to lay on my side in bed (Very sad!) I was very fatigued, no energy and the pain/symptoms seemed to get progressively worse by the day. I begged my GP to try me on pred which she rather reluctantly did, 5 days later I felt like a new man. I've now gone from shuffling slowly to the shops like an 80 year old (I'm only 53) to going out for a 5 mile walk at a decent pace, so far so good :-)

As well as the above symptoms I think I had trapped a nerve in my back (Not uncommon, sadly I seem to have been plagued by various muscle/nerve issues for many years) the fingers on my right hand were a bit swollen and It felt like somebody had plunged a knife under my left shoulder blade.

This is now a terrible pain, I have shooting pulses of pain going down my left arm, my elbow is so painful I could happily cry, my fingers are numb and tingle, I at times lose all strength in fingers of my left hand. I'm on 15mg of pred, I'm also popping various painkillers like smarties, nothing is touching this terrible pain.

I guess my question is; does this sound like another symptom of PMR? or has life decided that I do indeed need another issues in my life?

As ever, any words of wisdom gratefully received.

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Mike1964
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89 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Mike,

Sorry to hear about your arm/shoulder pain. The fact that no painkillers touch could point to it being PMR, as you know that pain is usually bilateral rather than one-sided, but as most of us know it cannot be ruled out.

It could be referred pain - in the form of myofacial pain or bursitis. It could be that as you feel better you have done too much and that has made a previous injury flare up.

You have a couple of options -

increase your Pred to see if that helps, a few days at 20mg might do it, and then back down to 15mg (but really you should run that past GP, who may not be too happy if she was a bit reluctant about trying it in the first place),

see a physio or Bowen Therapist who has some knowledge of PMR

Whatever you do, you do need to slow down. Just because you feel better through the Pred, you still have the underlying illness which is continuing to cause problems.

Have a look at attached

healthunlocked.com/pmrgcauk...

Take care

Mike1964 profile image
Mike1964 in reply to DorsetLady

Thank you. I guess maybe I'm in a bit of self-denial over the whole PMR thing. Being a rather simple man my philosophy has always been; you have a pain, you pop a pill, pain goes away, you go back to normal. I work full time, I have a very ill wife, a beautiful son with special needs who needs lots of son & dad time, maybe I'm a bit scared of what my new normal can look like.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Mike1964

Hi again,

You’re not the only one to be in denial at the start of PMR......whether male or female.

Unfortunately PMR is not a ‘normal” illness as I say in my blurb, and that’s what most people..patients and doctors find frustrating.

You obviously have a lot on your plate with your family and full time work, and all I can say is please get as much help as you can on all fronts. I understand that may not sit comfortably with you, but you really need to look after yourself as well otherwise you will not be able to help your wife and son.

Your HR department should be fully involved to try and make your workload easier, and your doctor’s surgery with your family.

We are all inclined to try and soldier on and not ask for help, but please swallow your pride (if you need to) and ask!

We are always here to answer questions and give support, so use us as you need.

Good luck to you all.

You may not like your new normal (in a slower lane maybe) but your family will still love you, so don’t worry.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Mike1964

It really doesn't have to look bad at all. The first thing to do is to look for some help with things that someone else can do instead of you. Look into getting some help with the housework. See if there are grocery delivery services available in your area. Drop the laundry off at the laundromat and have them give it back all folded and ready to put away. You'd be surprised how little such help can cost, and how much energy you'll save to do all the things only you can do - like spend time with your wife and your son.

I don't know what kind of work you do, but maybe you can work from home for some time every week. If that's feasible, make a plan showing what that would look like, and talk to your employer.

Remember that you're not helping anyone if you aren't taking good care of yourself. You'll be better now, and get better faster, if you get enough rest, take your meds and vitamins, and eat a healthy diet.

Most of all, find time to visit this forum frequently. You'll find the best information, guidance, understanding, and comfort every day.

We're all here for ya.

Jura1959 profile image
Jura1959 in reply to Mike1964

Hi Mike 1964,

Don't know where your From mate but I sympathize with you very much because like yourself I too am a very active or was very active before being diagnosed with one in early 2017 and stil having problems. But has people on here give such sound advise it is worth listening too take the day slow and you will see it through each day at a time and I thought I was young at 57.k

Mike1964 profile image
Mike1964 in reply to Jura1959

Thanks Jura, it really is such a help to know you’re not alone.

Sorry to hear you are struggling. I see you have a lot of good advise below, so I'll leave it to the exerts, which I am not. Here's my breakdown on signs, symptoms and side effects: rantingsofamadwomanblog.com...

PMRpro profile image
PMRproAmbassador

Well for a start - calm down on the exercise for a bit!!! You aren't cured - and if this really is PMR then your muscles are intolerant of acute exercise.

The thigh pain when lying on your side is probably trochanteric bursitis and may take a while to clear (took me 5 or 6 months). Your back pain sounds typical of myofascial pain syndrome - which is often found alongside PMR. I have just had a few weeks of utterly excruciating low back pain - sorted by an excellent rheumy.

But this isn't a place where you pop a pain pill and all is hunky dory I'm afraid - there really isn't anything I can add to what DL has already said. Other than: which fingers are affected?

tendonitisexpert.com/Carpal...

Does this fit? If it isn't the thumb to middle fingers then it could be ulnar nerve compression from the shoulder. Both sometimes happen with PMR.

Mike1964 profile image
Mike1964 in reply to PMRpro

Thanks Pro, lots of interesting (And scary) advice and information. Flipping heck, its not all fun and games is it?

PMRpro profile image
PMRproAmbassador in reply to Mike1964

Hehe - it's called advancing maturity ;-)

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Mike1964

"Getting old is not for sissies" - Bette Davis

Insight329 profile image
Insight329 in reply to GOOD_GRIEF

That was one of my mom’s favorite sayings. I can certainly relate to it now.

Robinre profile image
Robinre in reply to PMRpro

I was treated for trochanteric bursitis for over a year (on and off) and I read about pseudogout and the similarities to trochanteric bursitis and tried my medication for pseudogout that I had in my knee inbetween bouts with my "hip bursitis" and low and behold the pain was gone the next day. I now take my pseudogout medicine when my hip pain flares up and again it is mostly gone the next day and never lasts more than two days.

PMRpro profile image
PMRproAmbassador in reply to Robinre

Interesting... What drug is it?

Robinre profile image
Robinre in reply to PMRpro

Colchicine or Colcrys - I use it very sparingly as it has its side effects, the same as the dreaded Prednisone. But, it certainly works. I have learned to differentiate the pains of my PMR and pseudogout. I also had Piriformis Muscle syndrome which is another type of pain. Lucky for me, a doctor finally agreed to address that issue separately (I had been asking my Rheumatologist for 2 years to consider this, since I knew the pain was not from PMR or pseudogout). When referred to a pain clinic for this muscle pain, the "young" doctor (he actually looked like a teenager) agreed to treat the Piriformis muscle with an injection directly into it. Starting with the next day after the procedure, I have been pain free from this particular problem for 3 months now - The doctor apologized when I told him I suffered for 2 years needlessly, and he replied that only about 1 or 2% of hip pain is from the Piriformis muscle syndrome and that is why doctors want to rule out everything else first. I knew it was this because I had done a lot of research into this problem and I had all the symptoms and besides the muscle was so inflamed (at my worst times) that the nurse was even shocked by the feel of it. Oh, well, what we go through to get our physicians to listen to us.

PMRpro profile image
PMRproAmbassador in reply to Robinre

I have exactly the same thing. I have just had a mix of a week of high dose NSAID infusions which sorted the aggravated sacroiliac joint problem, followed by bilateral steroid injections for the bursitis. One was fine within 24 hours, the other has taken a couple of weeks. This was also from the brand new regional head of rheumatology who looks about 15 despite being world-renowned! Now he knows I doubt I shall have to wait so long again.

Why on earth don't they ask a physiotherapist to assess it if they can't manage it themselves? My physio can tell me exactly which muscle is causing the problem! And when I saw the pain specialist at the local hospital 6 years ago, she took one prod at my back muscles and identified the entire problem. Unfortunately hospital politics drove her out and she is no longer there. I could see her as she is a GP up the valley but it would be privately so would cost more.

And you know - it may be only 1 or 2% of the general population who have a piriformis problem but I will lay odds it is far higher amongst PMR patients. I think it and myofascial pain syndrome are both as much part of PMR as anything else. Treat those bits separately and we can manage on a much lower dose of pred.

Robinre profile image
Robinre in reply to PMRpro

I agree. I treat all of my pains separately and I know how to differentiate each from the other and know what works with what and I remain pain free for the most part. I am now down to 2-3 Mg of Pred and ready to take the next step.

in reply to PMRpro

Mike,

see a physio with the pain in the arm. I get it too, and when she moves my neck one way, the pain , and pins and needles in the arm, is instant, then she stretches my neck, and the pain goes, instantly, so it could be nerve compression as Pmrpro says.

Mike1964 profile image
Mike1964 in reply to

Thanks Sapper, I have now suggested a physio referral to 2 Dr's sadly non has been forthcoming as yet. It's all rather frustrating, I have to take time off work to sit around waiting endlessly for a GP then they do the classic mechanic bit of sucking in their breath and saying it should hopefully clear up in a few weeks. Sadly i'm left in oodles of almost constant pain and more than a bit miffed! (Hence the rant! :-)

PMRpro profile image
PMRproAmbassador in reply to Mike1964

In your place I would give Bowen therapy a trial. If it is going to work - it has for a lot of us but not everyone - it will be obvious in at most 3 sessions so not a totally open-ended committment although sometimes you need a few more to get a REALLY good result. One lady on the forum had been in bed much of the time for several weeks and could barely get to the loo using a zimmer. She struggled into the room from the car with a walking stick and a friend on the other side- no room for a zimmer in the car! An hour later she walked out and realised she had forgotten her stick!

The trouble with too many doctors is that they have no concept of not being able to work because of back pain - nor the complementary techniques that DO make a real difference: "Here, take these pills..."

Mike1964 profile image
Mike1964 in reply to PMRpro

Thanks for the tip Pro. I've booked in for an x-ray and consultation with a chiropractor on Thursday, having done lots of research am still reasonably convinced it's a trapped/pinched nerve. I suspect due to the constant pain of the PMR I was so hunched over that's how I've done it. To be honest I can't believe I've been so bloody stupid as to put up with this awful pain now for 3 weeks. I guess it's just ingrained that you have to wait for the GP to do something or refer you somewhere, no more!!!!!!!!

PMRpro profile image
PMRproAmbassador in reply to Mike1964

My osteopath was good too - but I needed Bowen for the muscle side. It isn't always bones pinching nerves, muscles can do a pretty good number too!!!! Between the two of them they kept me upright and reasonable mobile for 5 years of PMR without pred. Miss my Bowen lady - they are a bit esoteric here. I'm in to down-to-earth practicality.

Mike1964 profile image
Mike1964 in reply to PMRpro

Blimey, 5 years of PMR without Pred is incredible. I think maybe I've had it for 18-24 months. I was just conscious during this time of aging rapidly, I would get up in the morning and ache for at least an hour, after popping some good old painkillers i would go out for a walk and my body would loosen up, I was then able to get through the day. During his time things did deteriorate, I certainly ached more and for longer periods, I was also taking a lot more pain killers. My wife became very unwell recently, I was working full time, having to cook, clean, manage the children and basically be a rock and counselor to her, thats when things just exploded. I now suspect I had a massive flair up due to the stress and pressure rather than that being the start of it?

PMRpro profile image
PMRproAmbassador in reply to Mike1964

I think that sounds about right - it is probably what finally happened to me. Stress does really make things much much worse. My GP kept saying "what do you expect at your age?" - I was 51 when it started for goodness sake. And I think that is part of the problem. When I was younger our parents were old at 50 and the thought processes haven't adjusted. I have 80+ year old neighbours still riding bikes, skiing, climbing mountains. I could barely walk to the end of the road.

Mike1964 profile image
Mike1964 in reply to PMRpro

Hi Pro, may I ask how long you've been treading this road?

PMRpro profile image
PMRproAmbassador in reply to Mike1964

Just got to 14 years! Five years unrecognised and silly excuses from the GP. Then I did the research and found an answer that fitted - and turned out to be right enough insofar as it is possible to tell. Though I and a couple of rheumies think it was almost certainly the large vessel vasculitis crossover between GCA and PMR. I had scalp pain and jaw claudication briefly and other typical GCA/LVV symptoms. But 15mg did the job in 6 hours so it can't have been that severe!

I THINK it is still here - but it is difficult to tell. I have had 4 biggish flares - but the last 2 have been different.

Mike1964 profile image
Mike1964 in reply to PMRpro

Wow, I'm truly sorry and frankly speechless. Thank you so much for the love, support and encouragement you give to all on here.

markbenjamin57 profile image
markbenjamin57

Greetings Mike :-)

I can relate - very similar symptoms 3 years ago at the 'young' age of 57, a massive shock to the system for a fit and strong Action Man, and still on the PMR Journey.

You seem to have a good grasp not only of physical PMR symptoms (assuming so), but also the psychological journey!

All I would add to the comments from the 'Aunties' (experts) here is: have you had a FORMAL diagnosis of PMR from a Rheumatologist? Your GP sounds on the right track, but in my opinion you should also have a physical examination and some blood tests (ESR & CRP - inflammatory markers) to confirm conclusively or otherwise. If indeed you have PMR, that and all the blurb about it (here and through the NHS and British Society of Rheumatology) will arm you with the info you need to get help from your employer and any other relevant agencies.

The other issues (back etc) might well stem from PMR induced weakness combined with pushing yourself too hard physically once on the seemingly 'magic' Preds. Been there and got the T shirt!

Either way, keep Us Lot posted, you are in good and trusted company here.

'Uncle' MB :-)

PMRpro profile image
PMRproAmbassador in reply to markbenjamin57

Come come MB - blood markers do not "confirm conclusively". They are an aid...

markbenjamin57 profile image
markbenjamin57 in reply to PMRpro

Good point PMRpro, I stand corrected. But what about the Rheumy consultation for Mike..?

PMRpro profile image
PMRproAmbassador in reply to markbenjamin57

Waiting for further info...

Mike1964 profile image
Mike1964 in reply to markbenjamin57

Thanks Uncle :-) No formal diagnosis yet, my GP suggested I may have Fibromyalgia after going to her many times with slowly worsening symptoms over a 2 year period. I did some research and stumbled upon PMR. My symptoms seemed to match exactly, I believe I have actually had this for 18-24 months but have recently been under massive stress following my poor wife's sudden illness, then bang, it just exploded over 2-3 weeks, my body literally aged 20 years during that time with constant pain. I really did wonder if I was going to end up in a wheelchair in 6 months due to the rate of deterioration. I think she was as surprised as me when I went back after a week of pred to say I felt like a new man. She had actually already referred me to a Rheumy so I'm waiting now for the appointment.

Oh the joys! But seriously thank you so much to everybody, I really did feel so low earlier but now i'm back to onwards and upwards! :-)

markbenjamin57 profile image
markbenjamin57 in reply to Mike1964

No worry Mike, all part of the service here. Even if Us Lot can't fix anything for you, at least we can give some moral support and a few grins when the going gets tough. Many of us have been through similar or worse things in Life.. ;-)

l'm not a medic but all you say about your symptoms rings true of PMR. But, of course, this 'family' of health conditions do seem to have overlapping and often confusing symptoms that even some GPs can't fathom!

That said, sounds like your GP is on the case and (as important) it's good to hear that your coping on your Journey. Good luck with your Rheumy appointment, try to stay positive, and don't be afraid to have a good RANT here if you ever need to.

MB :-)

in reply to Mike1964

If pred worked and pain killers haven't then you have your answer in the main. I have fibro as well as PMR and pain killers help that but not pmr. There are a few of us with both.

I had to overdo it this past week and since yesterday have a back and side spasm that has brought on my muscular tourettes. The air is blue ever time I try and bend or even open the fridge door. A good sign that I have well and truly used all my spoons up.

Please take care of yourself and try not to do 5 mile walks just yet - that'll come in a while. It obviously is beyond you given all your other stressors AT THE MOMENT. Discuss upping pred to 20mg as you may need to get more control over inflammation.there are a few of us in our 50s and ones older now who were diagnosed or symptomatic in their 50s and yes you feel like a much older person pre pred, and during pred sometimes. Good luck with the rheumy.

Mike1964 profile image
Mike1964 in reply to

LOL, thank you so much for muscular tourettes (Have you bugged my house?) certainly a few less than wholesome words have left my mouth these last few days!

You have made my day, thank you :-)

PMRpro profile image
PMRproAmbassador in reply to Mike1964

A sure sign of a flare for me is very unladylike language...

Celebrant profile image
Celebrant in reply to PMRpro

I maintain I speak two languages-Western Canadian and Profane--!

HeronNS profile image
HeronNS

This article will help you understand that you are not alone, not in the symptoms, nor your reaction to them, nor the doctors who don't really get it. eprints.whiterose.ac.uk/852...

Mike1964 profile image
Mike1964 in reply to HeronNS

What an incredibly useful document, thank you for sharing. Boy can I identify with so much of this!

HeronNS profile image
HeronNS in reply to Mike1964

Originally this article could be had by folk like me only by paying a fee or making my way to our local medical school library. The author made it free to view because she understands how much we need to know these things. I think PMRpro said there was a second article in the works.

Soraya_PMR profile image
Soraya_PMR in reply to HeronNS

It is a good article. Thanks for re-linking HeronNS . Definitely worth a re-read 1 year in.

Cyclegirl54 profile image
Cyclegirl54 in reply to HeronNS

Just read this article and found it really interesting and useful. Thanks for sharing.

angiek profile image
angiek in reply to HeronNS

Thank you for that link, I have just printed it off for my family to read, may even show it to my imaginary GP one day!

Pongo13 profile image
Pongo13 in reply to HeronNS

Just read this. So useful.

SheffieldJane profile image
SheffieldJane

Really you need to have urgent medical attention with a pain of that severity in your left arm. I have been taken to hospital by ambulance for less. It could be a heart attack warning. Once that is out of the equation we can look at what might be causing this awful pain. It does not sound typical PMR particularly on 15 mgs of Prednisalone. Let us know what happens Mike!!

Mike1964 profile image
Mike1964 in reply to SheffieldJane

Thank's Jane. I must confess I had toyed with the idea with popping along to A&E, only because the pain was so bad. I've had previous instances of shooting pain in my right arm but never my left, and as I said this is more like nerve endings blasting pain straight down my arm, some is shooting out of my elbow the rest is going straight down my arm. I'm now starting to regret those couple of glasses of red to help the painkillers to help the pain! (It hasn't) assuming I make it through the night maybe a nice early trip may be in order :-(

SheffieldJane profile image
SheffieldJane in reply to Mike1964

It would fast forward you through the exploratory checks. It is an ambulance’s number one priority. My GP called one for me in his surgery. I had jaw pain and an achey arm. I was given every test known to cardiology, kept in over night, given the all clear. You have been under massive stress. You need to be strong and well for the family. For me It was PMR brewing and your pains do sound like nerve endings etc but don’t put it off, you will get some answers.

Mike1964 profile image
Mike1964 in reply to SheffieldJane

Well I bit the bullet, spent a pleasant enough morning in A@E ( Thank goodness for earphones and an iPad!) The good news was a heart attack doesn’t seem imminent, the slightly less pleasant news was the very nice Dr showing me the arthritis in my spine. I suspect due to the chronic pain of the PRS I was hunching over which has (I assume) resulted in a trapped nerve. Still in loads of pain but at least I kind of know why. Isn’t it amazing how quickly life can take you down a side road! 🤓

in reply to Mike1964

At least you can try and manage the pain and I am glad it's not your heart. From experience the pain if Arthur is in the spine and neck goes through phases. It nips you nerve for a while then the body absorbs that protein in about 6-8 weeks and the pain usually find a bit. The good thing is when you don't have the spasms you forget how much they hurt...i have remembered this week. Has Dr offerred Some thing like amitrypiline that will help with spasms especially on a night? I presume you are taking vit d3/calcium. Well done for getting the pain checked out.

SheffieldJane profile image
SheffieldJane in reply to Mike1964

Yes it is. I am so glad it wasn’t your heart and they were able to tell you what the source of the pain was. Did they give you something for it. My husband gets terrible back spasms and the give him diazepam which really helps him.

Mike1964 profile image
Mike1964 in reply to SheffieldJane

Sadly not :-( but he was a very kind Dr, funny how important that was at the end of the day.

Soraya_PMR profile image
Soraya_PMR

The arm pain.... from shoulder down? Or from elbow down? And which fingers?

Mike1964 profile image
Mike1964 in reply to Soraya_PMR

Feels like knife in back under left shoulder blade. This is causing nerve ending pain to go into my neck, whole left shoulder very numb and painful but I do strangely enough have full movement of my arm and back. The pain isn't constant, it comes in waves. When it does hit it feels like a light pulse flooding down my arm, some of it seems to flood out of my elbow which is very tender, the rest goes into my left wrist. All of my left hand fingers feel numb, when I try to clench my hand the tendons in my wrist are very sore and painful.

Soraya_PMR profile image
Soraya_PMR in reply to Mike1964

Well what you describe does sound reminiscent of nerve pain which I had from tennis elbow, and OMG did that pain shoot through, eyes watering and doubled up, clenching my arm to my body for protection. Chiropractor sorted it for me pretty quick and gave me exercises with an elastic band on my fingers (!) to stretch the tendon. Months of GP ineffectiveness sorted by the chiro in a couple of weeks.

However if yours includes the shoulder and that stab by your shoulder blade, take a look at your posterior serratus muscle. Could well be distressed by PMR.

muscle-joint-pain.com/trigg...

But yes, as SJ says, if any doubt, get checked out! Women tend to feel more arm than chest pain with a heart attack, but can also occur in men. The brain ‘misinterprets’ the pain as coming from the arm rather than the heart.

medicalnewstoday.com/articl...

Soraya_PMR profile image
Soraya_PMR in reply to Soraya_PMR

I’ve not written that well:

Chest pain is the prevalent pain with MI, but sometimes this registers as arm pain, and of the 2 sexes, the arm pain is more likely to be in women.

Mike1964 profile image
Mike1964 in reply to Soraya_PMR

Hi Soraya, sorry only just got around to looking at this. Goodness you've certainly hit the nail on the head, this perfectly describes my symptoms.

Now to do some more research, how to get rid of serratus posterior pain. Thank you

Soraya_PMR profile image
Soraya_PMR in reply to Mike1964

My recommendation would be a chiropractor (one who understands PMR). I swear by mine, and sometimes at her too ;)

I’ve seen a chiro since mid 90’s when my lumbar spine discs extruded. Dr’s just throw pills at you, the chiro worked on the problem, and kept me walking, and ultimately reduced the pain. Through the years she has got to know my back and bones very well. In fact, I turned to her when doc suggested my PMR pains were hip arthritis and further spinal problems. I knew these were not the cause. You know your own body, don’t you? She was the first to suggest PMR (I was already thinking it). Interestingly my spine was x-rayed along with hip at Dr’s request, and that problem area is now diagnosed as ‘arthritis’. Not surprised really, there was a heck of a lot of inflammation during the rough times. No arthritis in hip though :)

I wish you well whichever route you take to healing, and a speedy lessening of that awful nerve pain. Then it’ll be just the PMR to contend with.

Good news about your ticker 👍🏼

PMRpro profile image
PMRproAmbassador in reply to Soraya_PMR

My experience of a chiropracter in the UK was bad. My orthopaedic specialist in Germany had done chiropractic as part of his training at his boss's behest and was amazing. Two or three sessions, job done. In the UK it was come back every week for the next 5 years and you must buy these supplements too. A friend who used to swear by the same group now has a testimonial on my Bowen practice's page.

Soraya_PMR profile image
Soraya_PMR in reply to PMRpro

Got to say mine was good, and amazingly knowledgable, and up to date. Unfortunately she retired just as I started pred, and I haven’t plucked up courage to see a.n.other. If she was still working I’d be there like a shot.

PMRpro profile image
PMRproAmbassador in reply to Soraya_PMR

Good ones really are a find - but this practice in particular appeared to be there to make a set of Antipodeans a lot of money at the client's expense. Their line was always that this will be a longterm problem - the friend I mentioned was there at least every couple of weeks after months of weekly treatments at £30 a throw. And that was 15+ years ago!

Dear Mike1964, I see you have had a lot of great advice/responses from the site "experts," so not need for me to add my two pence... I will offer you my signs, symptoms and side effects though and hope they put your mind at rest.

rantingsofamadwomanblog.com...

Allenpinnaclepmr profile image
Allenpinnaclepmr

Take actemra. Right after my first shot, the pmr went into remission. I can only say it's a miracle drug.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Allenpinnaclepmr

Unfortunately not for PMR in UK.....only just got it through for GCA

ConventCassie profile image
ConventCassie in reply to Allenpinnaclepmr

How did you manage to get that here? Is it being distributed?

Allenpinnaclepmr profile image
Allenpinnaclepmr in reply to ConventCassie

In the US as long as you have a GCA symptom. It works

stellafmdm profile image
stellafmdm

Hi Mike1964, so sorry to hear of your troubles. Have you considered that the arm pain and tingling fingers could be a trapped nerve in your neck? This can be very painful and hard to get rid of the pain. A Physio may be able to advise you on this. I do hope you get some relief soon!

Mike1964 profile image
Mike1964 in reply to stellafmdm

Thanks Stella, yes it certainly seems to be a trapped nerve either in the back or neck, whichever one it is it hurts ☹️

Hi Mike

I haven’t read all the replies but this sounds like something completely different & needs looking at, see your GP for a referral to a Physio or you can often self refer to a Fully Trained Sports Injury Physio (as long as they are well recommended)

It’s easy to forget we can get other injury’s or illnesses along side PMR/GCA so l think it’s well worth getting it checked out.

Best Wishes

Mrs N 💅🏼

Mike1964 profile image
Mike1964 in reply to

Thanks Mrs N, I will do.

Loriel profile image
Loriel

Hi Mike,

All of the symptoms you've talked about are PMR symptoms. Wish I could tell you differently. I know people keep saying that anti-inflammatories don't work with PMR but it's been my experience that Indocid works. Now there are two kinds- 1. Capsules - might come under the name of Arthexin and 2. Indocid Suppositories. The latter is yuk to think about but I use only when I can't take it anymore, very effective. You would have to talk to your GP about these and any possible side effects.

I can't stress this enough, I only use these anti-inflammatories when I'm absolutely desperate for some relief. It's great to have something up your sleeve for times like that.

I still would ask your GP if an X-ray or scan could be done just to be sure you haven't pinched a nerve. Hope I have helped a little. Loriel.

Oldman-1 profile image
Oldman-1

Hiya Mike, I`m a 75yr male who this set of these damned symptoms came on overnight in September last. I was in so much pain I went immediately to a GP who straight away came up with his opinion that I had PMA. This was confirmed by a 2nd opinion at the same surgery. I was referred to a consultant. He confirmed the same. He prescribed 20mg of Pred straight off very slowly reducing by 1 mg per month. There are some minor flare up`s. A slight loss of balance comes on from time to time. Prior to this I was fit, agile who had the ability of a 52yr old. It`s very disappointing, but this is life mate.

Mike1964 profile image
Mike1964 in reply to Oldman-1

Thanks Oldman, it is indeed true you have to take the rough with the smooth. Hope you’re journey goes well.

Alsdouble profile image
Alsdouble

My only PMR symptoms were late 2017, upper leg, the back and buttocks pain. Serious. Had to buy new seat cushions. Some doctors were very reluctant to give me steroids. 2 months of pain. Eventually I got 30 mg daily and the pain went. Since then I have had steroids up and down for COPD problems. The daily steroids now 7.5 mg. I am doing my own tapering. No symptons. I do get 'clawing' of tnehand, (and feet rarely) but it's not a problem....much. Thre appears to be incredibly varying views on PMR and some doctors and a little clueless. Certainly no speccialsts have every been brought into the diagnosis. I have repat prescription of everything and I will do my own thing. Best way.

PaulinaCanada profile image
PaulinaCanada

I know how you feel Mike, I can't really give you any advise as only recently being diagnosed with PMR. But this is a terrific group with lots of info and support. Hopefully your GP can get you to see a Specialist, with meds and blood work, hopefully you can be on the road to recovery like the most of us here xx

Mike1964 profile image
Mike1964 in reply to PaulinaCanada

Thank you for the encouragement Paulina, thats very kind :-)

PMRinsdca profile image
PMRinsdca

Having had spinal issues and similar symptoms myself, it sounds to me like you may have a pinched nerve in your cervical spine area and possibly spinal stenosis (hope not... sorry to throw more at you). I would suggest a MRI if at all possible.

Swollen fingers I'm wondering... have you been tested for RA?

Like I said, I have spinal issues. Had scoliosis surgery at 15 and have many fusions down my back with disc degeneration above and below fusions. When I first started getting PMR pain, I blamed it all on my back (I was 54). Took a few months to figure out there was more going on, I had never heard of PMR. I actually thought I was dying. At times it's been hard to decipher what is the PMR and what is my back issues, but neither helps with the other.

Wish you luck.

Mike1964 profile image
Mike1964 in reply to PMRinsdca

Wishing you the very best too. Yes I must confess i wondered what on earth was happening, had certainly never heard of the joys of PMR either!

Grants148 profile image
Grants148

Hello Mike,l agree with Sheffieldjane,this could be a heart problem , my husband had a severe pain from his shoulder down to his elbow,his GP said it was a pulled muscles and prescribed pain relief, Unfortunately after about a week my husband suffered a major heart attack, The cardiology ward at our hospital advised that any pain on your upper left side should be checked out at A&E. I hope that this is not your heart but it is best to have it checked out,Please let us know how you are,and l hope that things will get better for you soon.

Mike1964 profile image
Mike1964 in reply to Grants148

Thank you, finally bit the bullet and went to A&E, heart fine but a lovely dose of arthritis in spine. An interesting link on serratus posterior muscle, definitely looks like it could be the culprit

Marilyn1959 profile image
Marilyn1959

Hi Mike. The difference in you generally when taking 15mgs of pred without doubt suggests that PMR is present. Having blood tests, once you are on pred, will not confirm diagnosis since the pred will already be working on subduing the symptoms including raised blood markers. However I am not so sure the remaining symptoms (one sided) are anything to do with PRM at all. They almost seem to replicate symptoms I had with tennis elbow, except the movement was affected in my arm.

Would recommend fast track private consultation, as a one off for diagnosis, since your remaining pain is acute and impacting on you negatively. (Worth every penny when I did it for PMR diagnosis @£200 for an hour consultation. I saw a private consultant who also works at local NHS hospital, so that further treatment was on the NHS.

The remainder of your pain does not sound PMR related to me. Nor does it sound like typical tennis elbow since you have full movement, however there are sufficient similarities for me to think that maybe localised cortesoid injection might work. It was a physio who suggested the injection, but maybe consultation with neurologist if you think it is nerve related?

Let us know when you get to the bottom of it and be assertive with that GP of yours. If he / she cannot give you answers, then he /she should be referring you on.

All the best.

Mike1964 profile image
Mike1964 in reply to Marilyn1959

Thank you Marilyn. It's all a bit of a nightmare at the moment to be honest. We are due to fly to Turkey for 2 weeks on Saturday, still have really awful pain in neck/shoulder/arm. It's just feeling like it's too late to get anything sorted, suddenly my 2 weeks of care free rest (I dream, I'm taking the children! :-)) are starting to look like a lot of gritting teeth and pain. I just knew when I planted that bomb in the mirror shop it wasn't a good idea!

Marilyn1959 profile image
Marilyn1959 in reply to Mike1964

Might still be worth a shout. When I phoned private hospital they offered me same day appointment. The consultant can then chose to fast track through NHS due to circumstances (these consultants seem to be able to mountains sometimes) or you can pay for one off injection. It might be worth the cost, against the cost of enjoying your holiday? If you don't ask you won't know, and you don't seem a defeatist to me!!!! There you go....I have thrown the gauntlet.

Don't suppose you have the option to postpone holiday through insurance since, it they do come up with PMR related diagnosis it would be a pre existing condition? So guessing that is a no no?

Marilyn1959 profile image
Marilyn1959 in reply to Mike1964

Other option is private physio session if it is a trapped nerve they can work miracles to untrap it!

Mike1964 profile image
Mike1964 in reply to Marilyn1959

Thank you Marilyn, you've inspired me. I've actually booked Thursday off work anyway so will see if I can get something sorted then. We have a private hospital nearby, I will ring in the morning and see what they recommend. (Mind you I might have to leave one of the children behind if I spend all of the holiday money, now let me think, which one is really my favorite?) :-)

daworm profile image
daworm

my guess, and its far from professional, is bursitis, but pain meds should be helping with that...bursitis is what kicked off my bout with PMR...left shoulder and arm for a couple of weeks getting progressively worse, then almost over night...bang..spreads across back to other shoulder & arm...and with it came all the crappy ill feelings...Dr agreed to try Pred...almost instant help...not a miracle by no means but wouldn't want to be without it...(prednisone)..

PMRpro profile image
PMRproAmbassador in reply to daworm

Interesting - pain meds have never touched my bursitis! Only steroids...

Mike1964 profile image
Mike1964 in reply to daworm

Thank you Daworm. I've vaguely heard of bursitis but have no real idea what it is, looks like it's back to google for me! :-)

PMRpro profile image
PMRproAmbassador in reply to Mike1964

These are nice images/simple explanations.

webmd.com/pain-management/a...

mayoclinic.org/diseases-con...

Shoulders and hips are often affected in PMR - otherwise it is housemaid's knee and tennis elbow people know about.

Mike1964 profile image
Mike1964 in reply to PMRpro

Thank you Pro, thats very kind of you.

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