Confused

Hi all, just had my weekly appointment with gp and due to covid not able to have face to face appointment with rheumatologist at the moment, so they have given advice to my gp to follow. Rheumatologist dont think I have pmr he think it fibromyalgia, gp not convinced, I so confused,

[DorsetLady PMRGCAuk volunteer]

No wonder, but sometimes it is difficult to get a definitive diagnosis.

Any reason why change of view from Rheumy, and what is next step?

[PMRpro Ambassador]

Does pred improve the symptoms? Fibro does NOT raise ESR/CRP nor does it respond to pred. You can have both - there are several people on the forum who do and I think all of them agree they can tell the difference.

But as DL asks - why does the rheumy think it isn't PMR and why fibro in particular. Other than it saves him thinking any further ...

[Hidden]

Mainly my age cause only turned 50 last nov. So gp going to write back asking for more information on why they think fibromyalgia rather than pmr. The only way they can tell if is fibro is to be off pred, so for now I start on 12mg and co cordimol 4 times a day, then drop 1mg every 3 wks but keep co cordimol as well

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Age is not an excuse - he needs to keep up with current thinking - okay it’s rarer in 40s/50s but not unknown - plenty on here!

Good luck with the co-codamol (if that’s what you mean) - unlikely yo help PMR if that’s what you have - and prone to causing constipation.

[Hidden in reply to DorsetLady]

Yes it was already take lactose twice a day cause omprezole causes constipation but now got to take laxido sachet as well

[PMRpro Ambassador in reply to Hidden]

Ask to switch to another - not all PPIs are the same, or even to an H2-inhibitor which also stops acid production but with different adverse effects.

[Pixix]

Hello! I have both and I can definitely tell one from the other, pains is quite different places and of a different type. Pred doesn’t touch the pain of FM either. Wondering if your rheumy poked and prodded you all over? If you Google fibro you will find there are about 18 specific pain points on the body and if you have I think 11 of them that shows you have it, in a nutshell. There’s more to it than that but if you find the diagram of body with pain points marked and you poke them yourself you can find how many you have! The big difference for me was no pain in shoulders and hips with fm but felt like I was holding up a house on my shoulders when diagnosed with pmr! Plus fatigue is different. Apologies but have to drive our motorhome three hours drive this morning and have to be out of here by 10am, so I must go! FM is pretty shattering too and if you are tired all the time it fits with it. There is a new nhs booklet on it which should be online too but no time to find a link. Why not write all your symptoms down and see if they fit fm? It’s a good step forward perhaps! Must dash, S x

[PMRpro Ambassador in reply to Pixix]

Have fun - so jealous!

Interestingly though - a lot of those trigger points they like to quote for fibro also apply for myofascial pain syndrome - and it is common alongside PMR and I would say is often part of PMR. I had 11 identifiable points - and I definitely don't have fibro since all are dealt with by pred, albeit a higher dose than many need.

[Pixix in reply to PMRpro]

It’s been the unhappiest holiday we’ve ever had so no need to be jealous! Can’t wait to get home today. Weather was appalling, David discovered hiccups....after ever meal small or large..sounds funny but one night he hiccuped until 5am...he was asleep I wasn’t! Amazing heavy rain beating down on motorhome roof. Not able to go in any shops as visitors not wearing any masks or obeying the still current social distancing! Main schools break up today but everywhere filled to the brim with kids. But lot of Scottish people they broke up two weeks ago but I didn’t think they would go immediately to north devon!! Beaches huge and space there do why did people park themselves so close to us we had to move twice? Once moved it’s the only place we felt relatively safe! Nightmare! Home today, fatal accident just in front of us blocked busy but narrow road on our way home for hours yesterday. Don’t be jealous, home is good right now!! S xx

[PMRpro Ambassador in reply to Pixix]

I haven't been out of the village/town for months - except for a 20km drive to the accountant and back! And unlikely to get any trip anywhere for the foreseeable.

That bit about seeking company in a vast desert is so common! We were on an enormous site on Garda - couple of hundred pitches, less than a dozen outfits altogether and some idiot chose to sit on the pitch immediately next to us. Neatly positioned to block the satellite signal and sun onto our pitch - it was a very shaded site in October. I told them to move somewhere less rude ... They did

Hope his hiccups aren't as bad as Bolsonaro's - diagnosis of the week!

Um - if you had asked I'd have pointed out the Scottish connection. Same as here - they sit outside school on the last day waiting to set off NOW. England isn't off so they think it will be quieter. Same in northern Germany - forgetting they finish at the same time as Italian schools. There isn't a point between Easter and mid-September when there isn't a region with school holidays somewhere in Europe! And with Covid there has been another surge in popularity for camping ...

[Pixix in reply to PMRpro]

We hadn’t been out of the forest area for 20 months. Shielding all the time no visit to a single shop. Holiday was booked when England at a very low Covid point. All our hopes were put into it and dashed. Won’t try it again but if we do I would have far less great expectations! I thought England was obeying social distancing and mask wearing you see!

[PMRpro Ambassador in reply to Pixix]

Ah - that's the other bit where you were wrong! Maybe you should have bucked the trend and headed for Scotland who are wearing masks and whose weather hasn'tbeen any worse for a change

I have to shop but I can at least tell myself that our flat was bought as a holiday place originally and millions come here for their holidays And in the rather INTERESTING thunderstorms this week I have preferred being here than in the campervan - and we just caught the edges, nothing really nasty here. There was a tornado at Torbole n Garda the other day!

[Pixix in reply to PMRpro]

I thought that but it’s a very long way to drive with two vehicles! I prefer Limone to other Garda places and we have had such downpours so much noise! Anyway, best leave it here as this is Karenwelsh post not mine and I must drive off home now! Phew! S x

[Highlandtiger in reply to Pixix]

If it makes you feel any better it wouldn't have been any quieter in the Highlands so your long drive to find peace would have been in vain. We are absolutely stowed out with campervans from South of the border (presumably without school age kids) and have been for months. I think all the popular holiday places like Devon, Cornwall, Lake District, Welsh mountains, Highlands etc etc are all the same just now.

[Pixix in reply to Highlandtiger]

I think so! We live in the New Forest National Park but moved to the quieter part in the north 8 years ago. It’s very sad here...four ponies killed by people feeding them, three hit and run accidents in two weeks killing two foals and a baby donkey. Don’t get me started on the rubbish they ditch, the use of the areas by the car parks as human toilets and no it’s not like that out of season! Just too many children around to be either Scottish or public school...already broken up! Ah, well, gives us something to moan about!!

[PMRpro Ambassador in reply to Pixix]

I detest tourists to be honest - even if I was one! It was a lovely quiet winter and the numbers are quite low now really. Says there are massive queues all down the valleys - sounds like a Saturday in winter! I assume they have looked at the weather forecast and are bailing out early. Though if they are going back to Germany it's even worse there ...

[Highlandtiger in reply to Pixix]

Oh dear that’s really awful about the animals. I was over in the North West Highlands a couple of weeks ago and I did see signs in a field of ponies saying 'please don’t feed us, you might kill us'. The rubbish and human waste issue is awful here too. Some people are just emptying their chemical waste onto beaches or into rivers which is horrendous and others are pouring it down public toilets thus rendering the septic tanks useless. Most of the public toilets have been taken over by local communities as the local council can no longer afford to staff them so volunteers are having to deal with this. Notices in the toilets seem to be ignored. That said, I’m sure most visitors are perfectly responsible but a minority most certainly are not. There’s also the issue of how to drive safely and considerately on single track roads but I think I’ll leave it at that for now...

[PMRpro Ambassador in reply to Highlandtiger]

There are so many who hire a van - never having driven anything that large before and never having camped before so totally ignorant of conventions. It's been getting less of a pleasure for some time - never went anywhere July and August if we could help it - so have mixed feelings about having to stop really. There is less of a problem with toilet disposal here - there are stations all over the place for emptying as well as campsites that offer the service for a reasonable price. But it was a problem at the free carpark at the ski lift - so they started charging and people decided they might as well use the local campsite!

[Pixix in reply to Highlandtiger]

Makes you wonder what they are like at home and also a concern as to the next generation too! They burned down the toilets here in the forest and they burned down the place where all the pony sales take place...it was all in wood in keeping and now the pony sales are cancelled. Stopped briefly on way home and watched tourists feeding the donkeys from a motorhome then a family stroking them and letting a tiny girl touch them...they are wild! Then the donkeys kept licking the windows of the next motorhome asking for good and the man came out and hit one very hard indeed. Nightmare. The authorities are trying to handle it but some of it just shouldn’t need handling it and is a new issue since the pandemic started and the visitor numbers grew by leaps and bounds!! Sorry you have the problem too I sympathise. S x

[PMRpro Ambassador in reply to Pixix]

What did we used to say "Do you do that at home?" "No" "Then don't do it here!" Alternatively: "Do you do that at home?" "Yes" "Well don't do it here!"

[Pixix in reply to PMRpro]

Absolutely! S x