PMR vs Fibromyalgia - getting my story straight for doc's appointment.

[Gimme]

I need to ask you wise and lovely folks for some input before I go to see the doctor, as soon as I can get an appointment. Every time I have an appointment with a different doc, the discussion gets side tracked by the fibromyalgia talk. I want to be able to stop it in its tracks this time, so that we can talk about the pred and my PMR and I want to feel confident beforehand that I have my facts straight.

I suspect that what drives the discussion is that they don't want me on pred, so they don't want to accept that I have PMR and it would be more convenient for them to treat me for FM, except I really do not believe that I have FM.

What seems to confuse them is:

ESR and CRP have never been elevated (though I have had slightly raised neutrophils) - but as we know, you can have PMR without raised inflammatory markers.

Age of onset - symptoms started mid 40s for me, though was undiagnosed until Nov22.

Absence of symptoms on pred - well, hellooo? That's possibly because I have PMR and pred works.

Why I don't think I have FM:

The musculoskeletal guy gave me a very thorough examination and specifically ruled out anything neurological.

The first GP failed to find any of the FM trigger points.

I don't have continuous pain of any description and I don't have heightened sensitivity to pain. No burning, throbbing, tingling or stabbing pains. Just muscles that don't want to work and hurt when they have to.

Why I think I have PMR:

Miraculous immediate response to pred and return of symptoms as I decrease the dose.

At the right dose, the pain and stiffness responds quickly to my morning dose, and I have pretty good relief all day. The stiffness only re-emerges after the magic 4.00 am (roughly). If I have to get up and go to the bathroom earlier in the night, I can move fairly freely. By breakfast time, the John Wayne waddle is back. So the pred seems to last me until the daily shot of inflammation fires off.

Type of pain, at rest I am not that uncomfortable, until I try to move and then my muscles hurt and are stiff, and I have difficulty getting moving. The stiffness gradually improves with gentle movement.

It affects all the large muscles in my body, hips are much worse than shoulders, thighs, buttocks, trapezoids, lats, and upper arms and it is bilateral. My neck and jaw are also unbelievably stiff, I suspect the temporomandibular thing is going on.

I have terrible fatigue at times and sleep a lot, which could apply to PMR and FM, my stamina is poor and my muscles tire very easily on exertion.

Paracetamol doesn't touch it, though I do have some response to NSAIDs, but nowhere near the relief I get from pred.

Does that make sense and have I missed anything out, do you think?

I should add that the reason I want to see GP is that both the rheumatologist and one of the GPs told me to taper off the pred and they want to test my bloods again as my PMR has burned itself out 🙄, but this is such BS. I have got to 3 mg, which takes the edge off the pain and stiffness, but I am back to being as disabled as I was before I started taking pred. I don't go out, except for essentials, and I can't even book a holiday. Oddly, I am still able to swim though. Over the last couple of weeks, I have had several falls, directly because of the stiffness causing me to overbalance. I fell off the bottom step trying to change a light bulb this morning, ended up on the floor and was unable to get up. If this continues, I'm not sure how much longer I am going to be able to look after myself and I am wondering if I need to go into sheltered accommodation. I'm only 65, for goodness sake! Plus, my knees had started to give me trouble before I started the taper, though it doesn't feel like it is the bearing surfaces and it seems to be the soft tissue at the sides of both knees. So I need to ask them to look at that. lastly, I am concerned about the fact that I seem to be in significantly worse physical shape than I was a year ago. The last time I felt OK ish was on 5-6 mg pred, and I think that is what I need to be on.

p.s. sorry it is so long.

[PMRpro Ambassador]

I actually find the whole thing crazy! Fibro is NOT inflammatory so doesn't respond to pred. Ask any of the people in here who have both - they can tell the difference even without using pred so they are two distinct entities.

Whatever you want to CALL what the patient has, they have a myalgia that is affecting their quality of life badly. If they take pred - the symptoms resolve but return when you reduce the pred too far, Ergo: They have a pred-responsive myalgia. Treat them as such.

PS, the knees are probably also PMR:

pubmed.ncbi.nlm.nih.gov/238...

If that group says something about PMR it is very likely true!

Include that last paragraph though - fall risk with untreated PMR is a real factor and a broken hip as a result will have far worse longterm effects than 6mg pred for a bit longer. And cost the NHS a whole lot more.

[Gimme in reply to PMRpro]

ha! yes, no wonder I have lost my confidence in them! I have to book the appt via e-consult, if I get the grumpy rheumatologist again, which is highly likely, considering the question I am asking, I will have to ask them to change it to one of the others. He treated me like I was some kind of smack addict last time, instead of a sick patient in pain, needing care.

Thanks for the link. I suspicioned as much, since it is both knees. Well, either the PMR, or the pred. Oh joy! I'll see if the tried and trusted bag of frozen peas helps.

Agree, I was going to mention the falls right from the start, as a good indicator of how well I am not doing. It shook me up this morning, not least because I live alone and I was stranded until I could figure out how to get back up again. Anyway, it focussed my thoughts. I've had enough of this nonsense. My friend wants me to get one of those pendants to call for help.

[PMRpro Ambassador in reply to Gimme]

If you are falling - you need one. My younger and very fit neighbour slipped and fell in her flat immediately next to me, there is a common wall to our living rooms and I didn't hear her. She dragged herself to the door and used her good foot to click the door open - and another neighbour on her way to the cellar for dog food heard her. She was in hospital for weeks - smashed shoulder, hip and ankle. It is scary.

I know the problem of not being able to get up again, I can if I can get a cushion to kneel on but old knee injuries mean kneeling on a hard surface is like kneeling on freshly sharpened knives!! And damage an arm and pulling yourself up is very difficult!

Did you complain about the grumpy rheumy? This treating pred like an addictive drug is a piece of nonsense - it is like telling a diabetic they can't have insulin.

[PMRpro Ambassador in reply to PMRpro]

PS - where are you?

[Gimme in reply to PMRpro]

I am in Hertfordshire, half way between Watford general and the Luton and Dunstable. For goodness sake, don't send me to Watford!

Actually, I reckon I could commute to prof Dasgupta from here.

The grumpy rheumatologist is a hospital consultant, but he also works as a GP at the surgery that I go to. Hope he's not reading this. My cards will be marked. 😳

[PMRpro Ambassador in reply to Gimme]

No - far better Rod Hughes, just round the M25 in Chertsey. Dasgupta is not particularly good at PMR IMHO and he is private anyway. If you are paying, RH is a better bet all round. I don't know how good Vanessa Quick is at PMR, her "thing" is GCA, but she is good mates with Sarah Mackie and she is at Luton & Dunstable.

And I think I would see if there is another GP practice because he'll be influencing others when it comes to rheumatology. And to act as if YOU wanted to be on pred given your history is daft. Of COURSE we get hooked on pred - it gives us some quality of life.

[Sophiestree in reply to Gimme]

what about Charlotte Wing in Watford General. I made a note about her after someone said good things about her. Can't remember what though. Sounds dire and you really need someone on your side. The falling part is one of my fears living alone. Can you make someone with you to advocate on your behalf?

[Sophiestree in reply to Gimme]

just had a quiquick Google and it says she's in Hemel Hempstead so pretty close

[Gimme in reply to Sophiestree]

My home town.

[WaltzG in reply to Gimme]

Northwick Park Hospital has an Arthritis Clinic and they have been good for me x

[Gimme in reply to PMRpro]

oh yes, he used those actual words, we get hooked! Well, we are physically dependent, but only because of the adrenals, not addicted. Crikey, I forget to take the pred altogether very occasionally and that couldn't happen if I was addicted. Trouble is, it undermined my confidence in him and I can't take him seriously now, just thought he was an idiot. I get the sense that he has a bit of a god complex. He might be surprised if he knew that I now hold quite the opposite view.

[Broseley in reply to Gimme]

My rheumy in Wirral also thinks you can get addicted to pred. He said that's why some people are on it for years and can't successfully taper.

[Gimme in reply to Broseley]

That doesn't make sense to me. What if they can't taper because they still have PMR?

[Broseley in reply to Gimme]

Ah yes, but according to him it only lasts two years!

[Gimme in reply to Broseley]

oh dear!

[Shiv14 in reply to Gimme]

If you have the option of going to see someone else put your energy into achieving that. From the sounds of it this man has no interest in being proven wrong so don’t waste your time trying to show him the light.

[Flutterbies57 in reply to Gimme]

Yes get a pendant !

[LucilleG in reply to PMRpro]

Thank you so much for this! I am a long time runner who stopped running once I was diagnosed with PMR 2.5 years ago (I now walk my dog twice a day). In the last 2 years, I've developed Baker's cysts on the back of both knees (never had any issues with my knees while running for ~40 years).

I had an ultrasound on one of the knees in the fall of 2022 (hadn't developed the 2nd cyst yet) and the radiologist recommended I get an MRI. I now have an appointment for MRIs for both knees, which will happen in the next few weeks.

It took 15 months to get the appointment, which I guess in the great scheme of things, that isn't too bad for our deteriorating heath care system.

[piglette]

Fibromyalgia in general reacts to painkillers and not steroids while on the other hand PMR reacts to steroids and not painkillers. They are chalk and cheese.

[Flutterbies57 in reply to piglette]

YES!

[piglette in reply to Flutterbies57]

Good luck with your doctor!

[Gimme in reply to piglette]

Exactly, and my response to pred is so immediate and so miraculous that I am in no doubt. 6 mg is enough to keep me totally pain free and moving freely. Except for the issue with my knees that started in October.

[random901]

Hello, Gimme! I have FM which predates my GCAPMR by 13 years. So I was already familiar with fatigue and heightened response to pain (I screamed once when my mother gave me a bear hug in greeting...) Like you, I have had some scary falls. Getting up again is no joke, especially if you're winded. My balance is not to be trusted. Re the knees: I have a high-density foam mat gardeners use which allows me a minute or so to rummage through the lower cupboard before I keel over or cramp sets in. I increasingly dream of a holiday, rarely going out other than to GP or hospital appointments, plus local shop 100 yards away. I can still drive my campervan, but take a break after 30 minutes to stretch. Do take a notebook and pen with you to your appointment(s) - I go armed with a list of points I wish to make. I wish you all the best!

[Hidden]

If you plonk all of that in front of yr dr split- splat I would suggest they will switch off pdq. Say it as you see it; brief, emphatic , polite, to the point , then shut up and see what they say. Take your cue from how they respond. Hide any notebook pen etc unless you specifically need to remember summat.

[Gimme in reply to Hidden]

ha yes, the plan wasn't to read him a lecture. lol My aim is to swiftly close it down and I will do that with more confidence if I feel sure of my ground. tbh, I wouldn't be going at all, if it wasn't for these falls.

[Flutterbies57 in reply to Hidden]

And if you don’t agree with them , do the uncomfortable silent stare, and wait for them to waffle on some more.

[random901 in reply to Hidden]

Well I guess it's up to the individual. I use notes as prompts as I invariably forget things and suffer from fog!

[Hidden]

Oh, and dont hestitate to say what you want. If one has too much info in front of brain I find one tends to waffle on .🤣 Are you falling because you are stiff with the PMR?

[Flutterbies57 in reply to Hidden]

Your silence will be good , because then they uncomfortable waffle on 😂

[Flutterbies57]

I know I won’t be much help , but I was diagnosed with Fibro 27 years ago . I did endless research. I got involved in a research project to help us sufferers . Unlike you tho , I had 98% of Fibro problems . I DID NOT want to have Fibro , but in the end I had to accept that is what I have! Problems did not change in all those years ! Sometimes a little worse, sometimes a little better.

About 20 years later I woke up in the middle of the night and could not turn over , because of excruciating pain across the shoulder area and lower area, like nothing I had ever experienced before. I persevered for 2 weeks waiting for it ease off . It didn’t. I went to a new Chiro in town. His treatment was totally unsuccessful. I went a second time and he wanted me to go straight to the Dr re PMR. Their idea was try steroids - if they work , then I have PMR. Within 12 hours all new excruciating pain subsided. It has never been questioned again . Old fibro pain was still there when I got down to 15mgs.

All my trigger points for Fibro were painful and often still are . My rates for PMR have never been elevated, but I am certain I have it as well.

I have never had treatment for Fibro - I don’t think there was any 27 years ago .

All my Fibro type pains are getting worse again now I am down to 4mg. Last time I got down to 3mg PMR pains struck overnight again .

They did not diagnose Fibro years ago unless you had ??? No of Painful trigger points. If you don’t have them , then why do they think you have it ?

I am in a very similar physical situation as you at the moment and have been for about a year. I am prone to fall over again , as I did last time I was down to 3mgs.

There have been some posts on here recently about what we may go thru when our adrenals should get up and running .

Perhaps go to the library and take a book out which lists all possible Fibro symptoms. Check for yourself how many you have and how many you don’t. All the best.

[Gimme in reply to Flutterbies57]

Thank you for sharing, flutterbies. That is useful. Helps build a picture.

As for why they want it to be fibro, I've had a different opinion and contradictory advice from every different doc that I have seen. Except for the first two, who have consistently maintained that it is PMR. It seems to be that they would rather palm me off with anti depressants than pred, but since I am acutely allergic to amitriptyline, they won't be able to use that one. I'm done with it all now. I'm not going to be a guinea pig for each new doc that I see who wants to make their own diagnosis. I'm going to try and see the one who made the original diagnosis again this time.

[Flutterbies57 in reply to Gimme]

That is a good idea- same Dr - consistent advice! We are in a similar state at the mo . I Have had the knee problems for a few months, ankle just starting.

I have fallen out of a restaurant, fallen face first at the Zoo, fallen in the sand getting to the beach . We went there to walk , so if I fell I wouldn’t hurt myself so much, - broke my ankle before I got to walk tho. 🥴 I do hope this phase is going to pass for both of us .

[PMRpro Ambassador in reply to Flutterbies57]

I have to say, if the sand is firm enough for me to be able to walk - it is pretty hard!!!

But honestly - if 4mg leaves you feeling better, why lower it? I have always said I will take what it needs for QOL.

[KASHMIRI1]

Good morning, your issues mirror some of mine. I was diagnosed with GCA in May 2020. Prior to that I had several trips to the GP with pain issues, I was told it was age related and Fibro. I was in my late 50s at this time. I never had the type of pains that are typical for fibro patients. I am now convinced that I had PMR and as it was untreated due to my inflammatory markers being not very high GCA developed. I had several falls in the run up to the diagnosis. By this time my markers were very high.

[Miacaro45]

OMG! I thought that I wrote your letter. I saw my rheumatologist the other day with complaints of practically every part of me hurting. He asked me about my sleep - I am lucky if I get 4 to 5 hours. He examined me and said I had Fibromyalgia. I looked at him in astonishment and asked if it could possibly be PMR. He said that my CRP and Sedimentation rates were fine so it couldn’ t be PMR. I am at my wits end. So, on my own I will up the Prednisone. Guess this will be a continuing saga. I will keep you in the loop.

I, also, asked the rheumatologist if my GCA could be bothering again. Of late, I have felt niggling in my jaw and pain in my head. I usually do not get headaches. He said to me that it could not be GCA because I am on 10 mg. of Prednisone. He said that I would not have a problem until I’m off of the Prednisone. I am at my wits end because this doctor is supposed to be the best and most knowledgeable in my area.

After reading Gimme’s letter , I upped my Prednisone. Fingers crossed.

[DorsetLady PMRGCAuk volunteer in reply to Miacaro45]

He said to me that it could not be GCA because I am on 10 mg. of Prednisone. He said that I would not have a problem until I’m off of the Prednisone.

What a load of rubbish -if he thinks 10mg is enough to manage GCA heaven help his patients… and has he never heard of patients flaring because the dose is too low?

Methinks you need a new rheumatologist..

[Miacaro45 in reply to DorsetLady]

Thanks for your prompt reply. I have been looking for a new rheumatologist but have found that most have not had many patients with GCA and PMR. It is quite frustrating.

[PMRpro Ambassador in reply to Miacaro45]

If 10mg is enough to prevent GCA causing a problem - why do they use 5 times as much as a starting dose? If he is the best and most knowledgeable in the area - I would hate to see any of the rest. But being good at RA , which is what they see most, doesn't make them good at PMR and perhaps the other doctors are better at treating the patient and not their image of one which bears no relationship to reality or even - shock horror - looking it up!!!

You are unlikely to find many with lots of GCA patients, it is a rare disease so one who claims to have seen a lot may well be exaggerating (that's being kind, I used a lot shorter word first) - we have heard such claims made.

Sometimes younger less arrogant doctors are preferable - they may be willing to learn with you.

[Gimme in reply to PMRpro]

I've found that, the younger doctors are easier to work with. My guess is more likely to be up to date with more recent thinking, since formalised study is more recent.

I've retained my habit from my professional life of checking publishing dates on clinical papers, and I have noticed a marked progression in thinking re PMR and similar illnesses, so if they are not keeping up to date, they could be practising out of date ideas.

Like you, I have wondered how many patients the consultants see with PMR, since often only the atypical patients get referred.

A throwaway line in a TV drama recently chimed with me, about hospitals having cases and General Practice has patients. Sometimes you have to step back and look at the bigger picture.

[PMRpro Ambassador in reply to Gimme]

Now you see, I find it a mixed bag. There is a fair bit of progression - but there is also some regression in how they are managing patients which has done none of us any good. They cut pred dose some years back - 30mg was a common starting dose and then they cut it to 15mg which does sometimes work but often isn't quite enough. That then made some think it wasn't PMR - poor patients. The 2015 Recommendations helped a bit because they accounted for the variation. Then they seem to have got terrified of pred again - with silly low starting doses and reckless tapering, even when the symptoms reappeared.

Christian Dejaco's Treat to Target paper is probably one of the most important advances for us in years. Now we need the 2 year myth to be well and truly busted. But it has to get through to the masses, and it isn't.

[Gimme in reply to PMRpro]

Also, re the dose, it sounds like a misunderstanding to me. The literature frequently mentions that untreated PMR makes it more likely that the patient will go on to develop GCA. Even if the data supports that view, it still doesn't make sense to me, when an effective dose for PMR is so much lower than the dose used in GCA.

[PMRpro Ambassador in reply to Gimme]

I think when PMR is treated properly it does prevent the GCA inflammation building up. A rheumy here told me he was of the opinion that 15mg is enough to catch GCA and stop the inflammation building up but he would never risk that if the patient was showing certain symptoms. By no means all GCA patients present with the red flag symptoms of visual symptoms, jaw claudication or severe headache and quite a high proportion of patients with "only" PMR symptoms are found to have signs of LVV and even GCA when they are investigated for a study. So PMR started at 15 or 20mg probably does prevent any progression of symptoms but they are probably the ones who take longer to respond even at those doses.

[Gimme in reply to PMRpro]

Interesting. That makes more sense.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

I think the phrase you need to take account of is "untreated PMR" - and as PMRpro says even at 15mg you may have some protection from GCA - but it's still a risk...

[Pixix]

I have both, will comment later, having a very stressful time right now, & stuff that has to be done first! See you later!!

[Gimme in reply to Pixix]

Thank you, that would be helpful if you have time, but please don't stress yourself if you have too much other stuff on your plate. Hope you get everything sorted. x

[Pixix in reply to Gimme]

I’m here! So…I had fibro for 12 years before PMR joined in! Everyone is different, that’s important to remember I think. For me, fibromyalgia didn’t stop my life a much as PMR, & I’d prefer fibro! But with fibro it’s a grind. Every day the fatigue, the pain, it’s very dismal, & for me, no pills that I could tolerate which helped. For fibro, at times, I ache 3verywhere, like I’ve got ‘flu. The consultant said, in writing, that I have a ‘full house of cards’…every single pressure point brought a pain response. It’s not always that crystal clear, which you have…or both! For me PMR differed in that the pain was concentrated into my shoulders, & I had chest pain, pain between the shoulder blades, I had dreadful head sweats, like I had a tap inside that was turned on! I also had more trouble in the area of hips & groin. But it is hard as I have hip problems from osteoarthritis, & I have bursitis & sciatica!! I’m 67, fyi. I have friends who are as disabled as you are through fibro. One friend, if she has a flareup (she is on medication) she can’t get out of bed…that’s how fibro can be. She has an electric wheelchair & is slightly younger than you & me. So don’t ‘write off’ fibro because it sounds like an ‘easier’ option, & you’re less sick with it. Far from it. But there’s no easy test, either. I thought they’d stopped using the pressure points as the main test, & were using the other symptoms more for the diagnosis. You say all this started 20, 25 years ago? That would fit fibro, as it is, imho, something you can wade through if you’re strong. But in your 60’s you’re not easily able to do so. I guess you live alone & have nobody to help change the light bulb etc etc, that’s tough. So, yiu coukd have fibro that you’ve had for 20-ish years & your body has had no help, no drugs & has had enough. You could have PMR…but I wouldn’t have thought you’d have had that those many years. An expert will join in & comment! I only had PMR symptoms for 2 months before I went to the Dr. OR it could be fibro or PMR or something else!! You don’t mention any other illnesses so guess you were OK. They say fibro doesn’t respond to pred, but when I was on 12mg & above, it definitely helped it. Below that & it was all back. If they give you 15mg of pred & everything is better, then it’s clear. But if your knees are still bad, & other problems still there, who knows? I’m no doctor, & can only see it from my point of view as a patient with both. But please be aware, I suffer withPolymyalgia , Fibromyalgia, Trochanteric bursitis, Hypermobility, Raynauds Syndrome, Osteo Arthritis, Sciatica, Essential Tremor,

Haemangioma (spinal), Orthostatic hypotension, Dry Macular Degeneration & Plantar Fasciitis. Plus two other diseases hanging in the wings! So I do have a job knowing what causes what! Good luck to you! S x

[Longtimer in reply to Pixix]

So much of what you have written is me! Went on 15 mg pred 12 years for PMR, felt wonderful.......about 3/4 years ago things changed, especially when I got down to 7mg....pain and deathly fatigue......had body scan, no inflammation so diagnosed with Fibro......horrendous pain. Have tried meds, but couldn't tolerate them. I am on 5 mg pred, and when I tried 4.5mg it was hell....I hav bursitis also. This pain, fatigue all over is overwhelming.....can't drive, too weak...Seeing physio tomorrow......can't imagine how he can help. I never hear much is being done to research Fibro....why not!!

[Pixix in reply to Longtimer]

For many years a large part of medical industry seemed to think it was ‘all in the mind’. I actually knew doctors who thought so, but I don’t know if they were in the minority. Now they seem to just accept nothing can be done, f the rheumy who re-tested me & said I still have it…only thing he offered me was a newly published pamphlet (nothing new inside!) it’s not alone, though. My diagnosis of hypermobility (had it since a child) was formerly done last year, & when I asked what help there was…I was given a second pamphlet!! Interesting…a physio while suffering with P.mR, fibro & bursitis. Please can you let me know if this helps? It’s taken me three attempts to get…very slowly…under 5mg…without getting so bad the Dr put me back to 5mg. But this time I’ve made it down to 2mg. And staying there for a while! Have you tried amitryptylline in the evening as a muscle relaxant? It helps me actually get relaxed enough to fall off to sleep. Don’t get a full night, but better than nothing! S x

[Longtimer in reply to Pixix]

Yes, you name it I've tried it, I take two paracetamol before bed.....get about 3 hours , then struggle because of Osteo in base of spine....after hour or so get about another 3 hours, always up by 7am....

[Pixix in reply to Longtimer]

We are all different! Paracetamol does nothing for me! And there’s no way I can get out of bed at 7…physically impossible…far too stiff! I’m on Tranadol & buprenorphine patches now, testing the patches, & increasing bit by bit, trying to stop the pain! Every little bit is a gain!!

[Longtimer in reply to Pixix]

There is n o other pain killer I can take. I nearly faint with dizziness with anything else, but lying down I can cope. No way do I want to get up at seven but I'm in too much pain to just lay there, especially with my back. This morning my legs were so weak, nearly didn't make it out of the bedroom.

[Raewynne]

I feel very sorry for you. I had heaps of trouble in the beginning with cert ain Rheumatologists.Refused to believe I had Temporal Arteritis. Thankfully it was acknowledged in the end .I have had some fibromyalgia pain on tapering..And yes now they try to push to get off the stuff and we have to go slow and we have to go up and down depending upon what's happening in our lives like illnesses or operations or grief etc.It is a roller-coaster.The side effects of Prednisolone have been awful for me .But it is the only drug that works for Certain things.

[PMR_sufferer1]

So I am on 5mg and the pain is bearable through the day but is back for sure. I know I am being stubborn but I don't want to increase my dose

I did however have fatigue and like you started to get the 4am omg no feeling.

I took 2 paracetamol just before bed and hurray I lost this 4am nightmare.

It's early days but in the short term if it works it's better than upping the pred dose I realise I need to manage paracetamol carefully.

The other thing I heard this morning in Talk TV Dr Bull Sunday show was that GP,s get paid not to refer patients to Specialists. What a crazy world we live in here in the UK.

[PMRpro Ambassador in reply to PMR_sufferer1]

That is hardly new - it has been an ongoing grumble since 2015 when it was first mooted. It increased during Covid of course - clinics were overwhelmed and actually you were probably safer NOT going to OP appointments. And now they are still overwhelmed and desperately trying to reduce the demand for referrals to reduce waiting lists. Hospitals have triaged referrals for ages - so it tends to depend on your GP using the right trigger words, just like phoning 999 can be tricked by saying chest pain and difficulty in breathing.

There is a degree of sense in it - a helpline is supposed to be available for GP's questions when they aren't sure and for us, a PMR diagnosis used to be made and managed in the GP practice. Then rheumies started moaning GPs got it wrong and THEY should see the patient. That is very convenient for a GP, they can cut their demand for appointments by saying that all PMR questions must be answered by the hospital team and they tried to refer everything. And the hospital ended up getting loads of patients who really didn't need to be there. And hospital waiting lists got longer and longer ... But the GP has more to do for that patient and they don't get paid by the number of times they see a patient - they get the same for the patient on their list they haven't seen for 5 years as the one who is there a couple of times a month. The primary problem is the model - the money doesn't follow the patient. So this is a way of persuading the GP to keep seeing the patient rather than handing them over to the hospital.

gponline.com/barriers-hospi...

[Avadip12]

well hello there , I am and have been in exactly the same situation as you. i was 48 when all mine started , and I am now 66 . If you read through my many posts you will still I get the same as you. Down at 3 mgs I can’t get up from the floor without crawling up the furniture. I could go on but really its an exact of you . I was told 5 yrs ago it’s fibromyalgia and to come of pred , but I am failing constantly because my body won’t function below 4 mgs . Good luck

[Longtimer in reply to Avadip12]

Same here.!....

[AtopicGuy]

"The musculoskeletal guy gave me a very thorough examination and specifically ruled out anything neurological."

Did he/she do antibody tests and/or check your tendon reflexes? I have recently learnt that some autoimmune disorders (which respond well to prednisolone) are classified as neurological disorders because they weaken the muscles by weakening the nerves that control them first. Some of them are called inflammatory, but do not show up in blood tests (eg. chronic inflammatory demyelinating polyneuropathy). Some of them involve elevated levels of antibodies (eg. anti- AChR or MuSK in myasthenia gravis).

These neurological diseases reveal themselves easily when they reach the stage of making the muscles spasm or stop working all together. They are not easy to diagnose when the symptoms are weakness, fatigue and pain. It seems likely that some patients fall into the gap between rheumatology and neurology.

I wonder whether many of us presenting with PMR symptoms, but normal inflammation markers and scans, have sub-clinical versions of neurological diseases. I have 0.12 nmol/L of anti-AChR antibodies that have no place in a healthy body; trouble is, I would need at least twice as many to be diagnosed with the onset of myasthenia gravis (an autoimmune disease of the neuromuscular junction).

[Body_bonkers]

You’ve convinced me Gimme but then I’m having similar battle. Sadly doctors rarely change opinion and certainly not from informed patients. Forget about the fight to label it for now and just focus on getting that extra 2/3mg steroids. Try softer approach - say you want to try increase for couple of weeks to gauge response as this has worked in the past when painkillers do not and your quality of life has become unacceptable. This won’t derail their plans to get you off steroids so they’ll hopefully agree

[Creas]

Your details as described sound identical to mine. My GP and Rheumatologist (I eventually got a referral two weeks ago, having had it since March last year - first went to the GP when it got worse in July - referral requested Sep) have both wanted me off pred. Symptoms got worse as I reduced pred (from 10mg to zero) then I started taking the Gabapentin they prescribed 3 days ago (for nerve pain - they seem to think I have Fibromyalgia and possibly an impinged nerve hence I'm booked in for an MRI to see if I I have disc damage).

The pain has slowly got worse since starting to lower the pred and now I'm barely able to walk.

I read the booklet the Rheumatologist gave me on Fibromyalgia and none of it sounds at all like what I have. I don't have any fatigue or mind fog and am mostly only in pain when I move. Sorry I am not helping you - but interesting to have the same experience!

[Gimme in reply to Creas]

Actually, it is helpful. It helps to validate my concerns. Thank you.

[PMRpro Ambassador in reply to Creas]

Why on earth can they not ASK the patient, LISTEN to the patient and BELIEVE the patient? The second rheumy I saw wasn't in the least interested in the diary I had kept about my response to pred and insisted it is inflammatory arthritis. The first one dismissed me quite rudely (in front of a trainee) saying it was OA in my right knee, she could "feel" it. Thirteen years later the same knee had similar pain again and since I was here, it was x-rayed. No sign at all of OA, The pain had disappeared rapidly with pred,

[Gimme in reply to Creas]

Is the leaflet that you have, this one, creas? bnssg.icb.nhs.uk/wp-content...

I'm glad I found that. It talks about lack of sleep due to pain. It says that sleep is a key symptom. I sleep like a log and I am asleep almost as soon as my head hits the pillow. And I often sleep for a couple of hours in the day. Sometimes the 4.00 am thing wakes me, but if I move about for a short while and have a cup of tea, I can easily sleep for another 3 or 4 hours. If I don't feel good when I wake, it's because of the stiffness and it takes me ages to get going.

It also recommends cycling, walking, yoga and t'ai chi, which is laughable. Those are exactly the kind of exercise that I find difficult. Both cycling and walking are far too painful. Yoga is also really painful, but I am persisting with very gentle yoga at the moment to see if I can get more mobile. I did t'ai chi some years ago, and there is no way that I could do that now, the arm movements would be too hard.

Anyway, I have tried to exercise throughout and the building up slowly hasn't worked for me. My capacity for exercise hasn't really changed. Except that I am able to swim and I have been able to do that all the way through.

I am like you, I do not have persistent and continuous pain and it is not all over my body. It is only the large muscle groups that give me problems and I am only in pain when I try to move.

I think I would scream out loud if anyone handed me that leaflet.

[PMRpro Ambassador in reply to Gimme]

It is now acknowledged that incremental exercise is totally the wrong approach for ME/CFS patients and it also applies for some PMR patients. You can build up slowly, starting from zero, but you often don't get far even with that and overdoing it can be disastrous.

[Gimme in reply to PMRpro]

Exactly!

[Creas in reply to Gimme]

No, I was given a leaflet by the VersusArthritis people. I'd already seen their site so none of it was news to me - I put a lot of thought into whether or not I might have fibromyalgia over the last few months! I'm going to carry on taking this new drug (which so far isn't working) for a while then see my GP again (got an appt this Friday). Also got a DEXA bone scan tomorrow (due to my frivolous use of steriods!) and an MRI in a couple of weeks time so hopefully the latter might reveal something of interest.

[random901 in reply to Gimme]

Thanks for leaflet, Gimme.

[AdoptMeow]

Don't have time to review all the responses so here's my quick input. Have fibro since 1984 and PMR since May 2018.Fibro never limited my movement.

Anyone who has the 3 AM return of pain can try taking an evening dose of 1/4 to 1/3 of the total. It is not helping to control and put PMR in remission if you are constantly letting the inflammation take over before your morning dose.

[IlovePorridge]

Hi Gimme, I am following you as I am interested in how your 'story' progresses. There are so many similarities between us. I have a Sjorgen's diagnosis and my GP suspects Scleroderma, as do I. I am waiting for an appointment with a second rheumatologist. I also have kidney and lung involvement. My treatment to date is to treat the symptoms rather than the cause. Therefore, I do not have any experience of prednisone and cannot take NSAIDS as I have fundic polyps in my stomach. Last summer I felt very unwell and became depressed. I think I was almost 'mourning ' for my previously very active, pain-free life.Six months later, I am far more positive and take pleasure in living my life the best I can. Anti-depressants, and a very supportive and loving husband have definitely helped. However, the medical problems remain.

Good luck and best wishes.