Article in Times 2 today

[braininjurythepits]

In response to my earlier post...

Note from PMRpro: For those of you who can't read it, here is the relevant text from about halfway down the first column:

"My own sorry story - remember, what doesn't kill you makes you whinier - began four years ago with back pain. For about a year I didn't go to my GP because I know GPs don't really know about backs, so there wasn't really any point, and also I don't like going to doctors because I always feel I am invading my privacy somehow (I'm invading my privacy here but I figure if one person, as yet undiagnosed, recognises their symptoms and is helped, that will make it all right.)

So I had this pain and then my back muscles started spasming - ask me what it felt like, it felt as if my back were having a baby and I ended up in A&E, I was given Valium, which did help, even though it meant I did keep falling asleep while working and got through quite a few keyboards (I'd fall asleep at my computer, my head would clunk down, I'd dribble ...) But the pain didn't go away, it got worse.

So, finally, off to the GP who said "We all get aches and pains" then prescribed "rest" so that was humiliating. But it got me out of the surgery. Next! Then the pain got even worse. I returned, This time I was given a prescription for antidepressants (my God) which I put straight in the bin. Next! The pain then spread across my shoulders and chest. I developed an odd hobble, (My sister said to me "Why do you walk like you're 98?, such a comfort my sister). I could not bend to put on shoes (hello Crocs) and could not take clothes on and off over my head and could not pick up anything I dropped and had to develop various hacks for, say, getting in and out of the car, and the fatigue was unbelievable. Also when I went to the shops I would pray that everything I needed was at eye level of I wouldn't be able to have it, (One day I came home with the Morning Star because it was the only paper on the rack I could reach.)

I went again to the GP - I was, in effect, disabled by now - who did refer me to rheumatology at the local hospital and I did get a letter asking me to make an appointment. But the number I was told to ring did not exist. So back to the GP where the receptionist gave me another number to try. This one just rang out. So back to the GP - this did seem like a sick joke to play on somebody who is sick - and I was given a further number to try. Hurrah, somebody picked up. But only to bark "No appointments" before hanging up. Then I stopped being able to get out of bed altogether, Body. Just. Wouldn't. Work.

To cut a long story (mercifully) short, a posher, richer family member scooped me up and delivered me to a private rheumatologist - I know, it's lucky I could afford it, although only just; have you seen the prices? - who, after listening to my symptoms, diagnosed polymyalgia rheumatica, an autoimmune disease where the body attacks its own muscles for some reason. The blood tests confirmed it because my "inflammatory markers were sky high.

I was put on steroids and for the first time in four years - in 4 years - my pain lifted, It lifted within 2 hours, in fact, and was completely gone within 48 hours. I am now right as rain, and, hopefully, once I eventually cease the steroids, the disease will be gone. But since these drugs work by reducing the efficacy of your immune system I just wish I could believe what Johnson says about the NHS being "fantastic" and all that. But sorry - I can't. "

The lady may be awared an honorary membership of this forum!

[Hidden]

Cheers will have a go!

[Hidden]

It's just too blurred but please don't worry. I may be able to sneak an access in a couple if day. Of course the time let's you read the first bit before it cuts you off so I did see the first quarter. Thanks for trying!

[PMRpro Ambassador]

Never mind the brilliant description of how GPs sometimes can't diagnose PMR when it gets up and hits them over the head (it mirrors my experience except my GP didn't have to sign me off work as I was freelance and he didn't insult me by offering antidepressants) - my nurse daughter was echoing the headline last night ...

[Charlie1boy]

Excellent article, which I did manage to read. Leaves me speechless though. It is a disgrace that people have to suffer so much pain unnecessarily.

In spite of all that the Charity does, there is still a glaring requirement for more education of GPs and other professionals on PMR (and GCA of course).

Thank you for posting the article.

Paddy

[braininjurythepits in reply to Charlie1boy]

I was visiting chiropractors and osteopaths for months before I finally went to see a rheumatologist — I was amazed that my symptoms didn’t raise any red flags for them. I really believe that those in these professions could also benefit from education on PMR

[Highlandtiger in reply to braininjurythepits]

It was a chiropractor who diagnosed PMR for me (or at least he "suggested" it might be PMR and wrote to my GP asking him to do the relevant blood tests) so I'm eternally grateful to him as it got me the diagnosis and got me on pred.

[Arflane97G in reply to Highlandtiger]

It was a physiotherapist for me that I had paid to see, he said I really would not feel comfortable taking your money - you need to ask your gp to run a full set of blood tests to see what is really going on !

[Kaaswinkel72 in reply to braininjurythepits]

As a ex physio, I am angry at the chiro and the osteo....no doubt they were private practitioners.....they should have done their homework...and refuse to take money of a patient with an inflammatory condition...does not do their reputation any good at all...

[Highlandtiger in reply to Kaaswinkel72]

I guess it’s like GPs, some are good and some aren’t as we can see in the posts above. Mine only charged me a half fee. To be honest I’d have gladly paid the full one - I was so relieved that someone seemed to understand something about my condition at long last.

[PMRpro Ambassador in reply to Kaaswinkel72]

To be fair to my Bowen therapist and osteopath - the GP insisted there was nothing wrong and what they did did make living with the PMR easier. They didn't improve the PMR but they did improve what I have always referred to the "Add-ons". And for that reason they were worth every penny - even if it did cost me a fair bit.

[Rosbud]

Thank you for posting , really interesting read x

[PMRpro Ambassador]

A transcript for those who can't read it. I will leave it here although I have also put it in the original post now:

My own sorry story - remember, what doesn't kill you makes you whinier - began four years ago with back pain. For about a year I didn't go to my GP because I know GPs don't really know about backs, so there wasn't really any point, and also I don't like going to doctors because I always feel I am invading my privacy somehow (I'm invading my privacy here but I figure if one person, as yet undiagnosed, recognises their symptoms and is helped, that will make it all right.)

So I had this pain and then my back muscles started spasming - ask me what it felt like, it felt as if my back were having a baby and I ended up in A&E, I was given Valium, which did help, even though it meant I did keep falling asleep while working and got through quite a few keyboards (I'd fall asleep at my computer, my head would clunk down, I'd dribble ...) But the pain didn't go away, it got worse.

So, finally, off to the GP who said "We all get aches and pains" then prescribed "rest" so that was humiliating. But it got me out of the surgery. Next! Then the pain got even worse. I returned, This time I was given a prescription for antidepressants (my God) which I put straight in the bin. Next! The pain then spread across my shoulders and chest. I developed an odd hobble, (My sister said to me "Why do you walk like you're 98?, such a comfort my sister). I could not bend to put on shoes (hello Crocs) and could not take clothes on and off over my head and could not pick up anything I dropped and had to develop various hacks for, say, getting in and out of the car, and the fatigue was unbelievable. Also when I went to the shops I would pray that everything I needed was at eye level of I wouldn't be able to have it, (One day I came home with the Morning Star because it was the only paper on the rack I could reach.)

I went again to the GP - I was, in effect, disabled by now - who did refer me to rheumatology at the local hospital and I did get a letter asking me to make an appointment. But the number I was told to ring did not exist. So back to the GP where the receptionist gave me another number to try. This one just rang out. So back to the GP - this did seem like a sick joke to play on somebody who is sick - and I was given a further number to try. Hurrah, somebody picked up. But only to bark "No appointments" before hanging up. Then I stopped being able to get out of bed altogether, Body. Just. Wouldn't. Work.

To cut a long story (mercifully) short, a posher, richer family member scooped me up and delivered me to a private rheumatologist - I know, it's lucky I could afford it, although only just; have you seen the prices? - who, after listening to my symptoms, diagnosed polymyalgia rheumatica, an autoimmune disease where the body attacks its own muscles for some reason. The blood tests confirmed it because my "inflammatory markers were sky high.

I was put on steroids and for the first time in four years - in 4 years - my pain lifted, It lifted within 2 hours, in fact, and was completely gone within 48 hours. I am now right as rain, and, hopefully, once I eventually cease the steroids, the disease will be gone. But since these drugs work by reducing the efficacy of your immune system I just wish I could believe what Johnson says about the NHS being "fantastic" and all that. But sorry - I can't.

[braininjurythepits in reply to PMRpro]

Thanks PMRpro, for taking the time to put her article out in full, so that everyone can read it 👍🙂

[tangocharlie in reply to PMRpro]

Thanks for posting. Someone should contact her to thank her for the article as it may help raise awareness and to tell her about the charity and this forum. It echoes the experience many of us have had. It took me about 8 visits to diferent GPs before one finally picked up on it being PMR 8 months later. I was told, like many women are, that I was stressed or depressed and I denied both, and it had all come on suddenly. And even when finally diagnosed I was put on too low a dose of steroids (10) and told to taper too quickly by 1 a month. I've lost all faith in doctors as I've been so badly mismanaged. Well maybe not all faith, but I've learned not to accept what they say without doing my own research and to question them. I think they're wrong about statins and cholesterol and they're often wrong about diabetes management, so I wonder what else they are getting wrong?

[tangocharlie in reply to tangocharlie]

I think it would be best if someone from PMRGCAuk contacts the author as she may be well placed to help with publicity but if none else wants to I will!

[PMRpro Ambassador in reply to tangocharlie]

I have already flagged it up to Admin - asking if maybe Dorothy Byrne knows her. They are both journalists after all!

[tangocharlie in reply to PMRpro]

Excellent idea - though I suspect they are on opposite sides of the political spectrum Times vs Guardian!

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

I think Deborah Ross freelances - DM and Spectator as well Independent.

Not sure most journalists care what side of politics they write about....

or perhaps I’m just an old sceptic.

[PMRpro Ambassador in reply to tangocharlie]

DB works for Channel 4 and DR is a freelance columnist. And when you freelance - you go where the money is! I know whereof I speak ...

[tangocharlie in reply to PMRpro]

Well the more bases covered the better when it comes to spreading the word

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Probably more successful outcome to go through “official” channels - as PMRpro has done.

[tangocharlie in reply to DorsetLady]

Absolutely

[Margaret17 in reply to tangocharlie]

After 5 years of having lived with PMR I have concluded that my Doctor doesn't always know what dosage of prednisolone to give me and when to help me taper them off. I was very against steroids in the first place and maybe that is why she has kept me on 10mg and left me to decide to taper off 'these' powerful drugs. I tried getting down to 2.5 mg, thought I had captured the beast BUT had a flare up which left me bedbound for 3 days. My Doctor put me on to 10 mg. This was in August 2019, have to return to this blog Charlie because I am too tired to continue..Susan

[DorsetLady PMRGCAuk volunteer in reply to Margaret17]

Are you still on 10mg then?

I think you need to get another doctor who has a bit more understanding - not necessarily of PMR - but if how to treat their patients.

You seem to have been abandoned.

If you give us a bit more information I sure we can help.

[Hidden in reply to PMRpro]

Deborah gives the impression that once on steroids the symptoms disappear and you can live a normal life.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I think for some people that’s maybe the case.....and certainly after the pain she went through before diagnosis ....it is her “normal”.

Not sure of Deborah’s age, or Dorothy’s for that matter, but as they are probably in the younger age range for PMR - and as both journalists and freelance maybe it’s easier to carry on working than it would be for many others.

As PMRpro very often reminds us...there also seems to be different forms of PMR......and I'm sure we don’t see all of them on here.

[Constance13 in reply to DorsetLady]

There certainly seems to be more aggressive forms (my doctor said of me 8 years ago).

[PMRpro Ambassador in reply to DorsetLady]

Dorothy is 66 - so not that young for GCA/PMR. Not sure about Deborah - but she doesn't look particularly old...

I carried on working freelance with unmanaged PMR, I also skied. I don't know how much time a freelance journalist spends in front of the computer writing and r esearching - but like me they tend not to have to commute daily to an office. Getting from bed to the computer desk was the most I had to cope with. It was getting up from the computer that posed probelms - sitting at it was not too bad. Being freelance also means there is a great incentive to keep going: no work, no pay, no sick pay option. You can also arrange your day to suit you - I could go to the gym at 9am and at 10am was pretty much able to move again after an aquafit class!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

DR -mid-late 50s

[PMRpro Ambassador in reply to DorsetLady]

So relatively young when it started - how did you establish that fact? I could find a load of US DRs but not her age!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Found an 2011 article which gave her age - and used the one brain cell to calculate what now! 🤣😂🤣

[PMRpro Ambassador in reply to DorsetLady]

Oh excellent!! Isn't it a shame we don't have a life I spent quite a while typing out her article

[PMRpro Ambassador in reply to Hidden]

Many people do - I certainly did for the first several years. Once I was on pred I returned to doing a lot of things I'd struggled with with PMR.

[Hidden]

Thanks pro....and biitp... Is there any reference to the fact that isn't the end of the pmr tale? " I suppose I shouldn't be greedy!!!

[PMRpro Ambassador in reply to Hidden]

No, I just missed out the beginning ...

[Melti]

Thank you bitp and PMR Pro.

Four years! Poor Deborah Ross.

Though when PMR really hit me in January, (probably had been rumbling on for a while without being actually disabling so I took no notice), I was suddenly and completely incapacitated.

From reading posts here, it seems that for some people the onset is very sudden and acute, while others have symptoms for ages before diagnosis and treatment. I realise that many people don't get diagnosed correctly and promptly, but it seems they are still able to function (with limitations) in spite of their symptoms.

I wonder if this difference in onset has any bearing on the severity and length of time of the illness?

[PMRpro Ambassador in reply to Melti]

Mine crept up on me and I can still describe the beginning making it uncomfortable to sleep with my arms above my head. Eventually I had the overnight "can't move" experience - I've had it a few times now, each time I really flare, and I'd say a big part of it is the parallel manifestation of myofascial pain syndrome. I think it is one version of PMR - and there are a few of us on the forum I think.

[DorsetLady PMRGCAuk volunteer in reply to Melti]

As someone whose GCA wasn’t diagnosed for 18 months - it was a matter of HAVING to function whilst coping as best I could as the symptoms got worse and moved from body to head until sight loss occurred

My illness lasted 5.5years - which probably is still in line with the average of 4 years - if you add in the undiagnosed period.

[Constance13 in reply to Melti]

Mine was sudden and acute. Diagnose within a few days. Excellent doctor. 8 years later I am down to 4 mg pred. It has been very aggressive throughout. Age probably doesn't help (72 when diagnosed) and I also had, and have, aggressive arthritis.

[piglette]

I really feel for her. I remember going back and back to the GP and being told it was a virus. I was not even offered a rheumatologist. Like her I went privately in the end. The people I really feel fir are those with GCA who have lost their sight due to medical incompetence or the people who have the wrong leg removed!

[PMRpro Ambassador]

But can anyone tell me what makes them think we are SEEKING prednisone? They are hardly opiods! Or do they think that we think they are the anabolic variety?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Probably....and thats worrying.

You perhaps expect the general public to think all steroids are the same....but the medical profession!

[PMRpro Ambassador in reply to DorsetLady]

Given the standard of pharmacological knowledge I meet amongst medics - nothing surprises me!

[KellyInTexas in reply to PMRpro]

I readily admit to “drug seeking behavior” and label myself as such- and use those exact words to elicit a smile and drive home the point of the desperation I feel to have the pred.

Mind you, I have a good relationship with my GP.

I used to call my coffee my crack addiction. Sadly I think it’s now pred...

If you met me you would find this very funny. ( think Velma from Scooby-Doo personality- but a bit more relaxed- but only just! ) Definitely a nerd -with NO drug seeking tendencies! Lol!

[PMRpro Ambassador]

Exactly - something like that. Between a rock and a hard place ...

[Maisiek]

Mine was picked up by a physio who sent me straight to my GP ;” lucky you’re at that surgery, not all GPs listen to us” 😰

[Sofarbrnun]

That's quite an interjection smack dab in the middle of an article questioning whether doctors will be able to diagnose Corona virus. I certainly hope it draws some attention to those of us who suffer from PMR/GCA . Heaven knows the doctors could use a bit of schooling on both these diseases. Rather, all three.

[Rv8apilot]

Great article. Thanks for sharing. More and more, I am seeing similarities and differences between the health care systems in the UK and the US. Both are really two-tiered systems. I guess if one is wealthy in the UK you can go outside the NHS to private docs. Here, it’s actually more like 3 tiers, with commercial insurance, government provided Medicare or Medicaid for elderly and disabled and those uninsured who are relegated to indigent clinics or paying totally out of pocket. Truthfully, I don’t see much difference if your doctor is a fool and sends you off packing with an incorrect or no diagnosis. We all have to do better. I shall spread the word.

[DorsetLady PMRGCAuk volunteer in reply to Rv8apilot]

whatever system we have...there are good doctors within it...and not so good. Unfortunately they don't have GOOD or BAD stamped on their forehead. 🤦‍♀️

[Hidden]

My PMR was very subtle. It started with a stiff neck on both sides and I literally couldn't look out of my side windows in the car to check if the road was clear. Weeks go by, and I got sick of it, so went to my GP and he gave me a 10 day step down pack of prednisone which worked wonders. As soon as I finished the pack, though, all hell broke lose with days. Shoulders, upper arms, hips, thighs, buttocks, and knees flared up and I couldn't get out of bed. Luckily, I had my laptop right next to me when I woke, and I managed to open it up, and Google my symptoms which pointed to PMR. Then I managed to painfully get into the shower, get painfully dressed, and climb painfully into my car to go see my GP again, and told him that I thought I had PMR. He immediately got on his computer and looked it up. He then had me go downstairs to the lab and get bloodwork done, and sent me home with 850mgs of Ibuprofen which didn't do diddly. The lab results came back the next morning with my SED rate sky high, and he then started me on 15mgs of Prednisone which worked like magic, and referred me to a Rheumatologist who didn't have any appointment for four months, so I started looking online for any help I could get on PMR, and discovered this site which knows more than anyone on the subject. I was able to educate my very own GP about PMR due to what I learned here, and he stepped up to the plate and did as much as he could for me while waiting for my Rhumy appointment. He even sent me for ultrasound on the veins in my neck to check for GCA. The only thing he wasn't sure about was how to start reducing the prednisone as there were so many different and conflicting methods about that online, and he said he would have to leave that to the Rhumy.

[PMRpro Ambassador in reply to Hidden]

And did the rheumy have any idea about reducing? As a lot of them don't!

[Hidden]

He didn't say nuffin bout it. I have not seen him since cos I really don't like waiting to get in there as he's so booked up. I just come here and learn as much as I can. Oh, and he's closed on Fridays, just when I need a new rx for pred. (guess he plays golf or sumpin)

[artfingers]

I recall it took months and months to be diagnosed here in the U.S. after seeing orthopedic docs, GP's, even a (not so good) rheumatologist who told me I could cure myself with diet (didn't work of course). Finally, my GP pointed me to an excellent rheumatologist (had to wait 6 months if I recall correctly to see her) who figured it out right away after blood tests. It really surprises me how so many doctors have no idea about PMR. Wish someone would spread the word - especially to orthopedic doctors who will likely come across a lot of people with pain issues.

[PMRpro Ambassador in reply to artfingers]

We do do our best

[Peptink]

Thank you for this post! You describe so much my frustration that I’ve felt for the past 5 years. Although not to the extent of your disability, my quality of life was absolutely horrible. I didn’t know what was wrong and no doctor would really listen. I started seeing a rheumatologist a couple of years ago and even then I was not diagnosed with PMR. I still had not heard of it at that time. Just late last year, after much research, I self diagnosed PMR after blood work showed slightly elevated sedimentation rates. I asked my rhumy if I could perhaps have PMR and she said we could try prednisone. Started out at 15mg and within 2 days felt such relief that I would cry because my emotions were running crazy! For the first time in years, I could squat down, climb stairs, and stand up from a sitting position with no pain. My shoulders, legs, buttocks, and hips were almost pain free. I’m gradually tapering down and doing it with the help of this support group. I’m listening to my body and telling my doctor what I need and that I need her to really listen to me. She wanted me to rapidly decrease but the pain was returning. Thank you everyone for sharing your stories!