Feeling grumpy

[susieq051]

Not to sound weird or strange in that this sounds like a criticism for doctors but I really would like the doctors to look into this website. This website has real people with real insight to our disease. Some doctors could really learn from this website. Stop and listen to the patient not just what they want them to know. I am talking about all doctors who are interested in making their patients better.

I am wired. I get up at 2:00 go back to sleep at 4:30 sleep until 6:30 it is just weird just having a complaint moment. I guess I will get over when dosage gets lowered, from 60 mg to 30 mg maybe.

[Constance13]

You know that, we know that, but the doctors don't. Far too busy to wonder how their patients are getting on!!

[susieq051 in reply to Constance13]

I plan on showing to a few doctors at the family clinic they to could some education.

[Rimmy]

You will feel less 'wired' when your dose comes down - been there done that - as have most of us here so we get it !!

Doctors !!!! yes they could nearly ALL do with a good 'dose' of HU - PMR/GCA in particular - and probably numerous other areas I am fortunate to be less familiar with. Not only would they discover that much of what they 'know' is dated or even inaccurate -this is not necessarily 'their fault' of course but 'someone is responsible somewhere for their 'education'. They could also learn about the actual EXPERIENCES of people and what these AI illnesses men in 'the' - or at least 'our' 'real worlds'... This is one of those 'perennial' subjects here with lots of angles to consider.

Best wishes

[susieq051 in reply to Rimmy]

So true

[Devoid]

The only problem would be is how different these illnesses effect individuals. With gca , spread to all large vessels in left side , I am 6 months in mobility badly effected and pain never controlled, yet I read someone’s account on here who was back at work in 4 days !! Don’t know how I would have felt if the doctor had told me that!

[PMRpro Ambassador in reply to Devoid]

But that is just what they DO do - if they haven't met the patient who struggles, they think a pred prescription is the answer to all our problems and you will be done and dusted in 2 years. If you aren't they may say it isn't PMR or GCA ...

[Marijo1951]

My recently retired GP had no idea at all about these complaints. He'd never even heard of GCA. However I have had some genuine empathy from my rheumy and her juniors - I suppose specialising in a condition does give them some greater insight.

I was on 60 mgs of pred to start with and well remember the 'wired' feeling. It's so strange to be unable to sleep when suffering the deathly fatigue. I just went with the flow in the end and found things to do - watching old films, knitting for charity etc. These days I'm on 7 mg and far less wired. I have an insomniac night about once a week, but most nights manage to sleep well for about 7 hours. This doesn't stop me from being exhausted during the day, but that's another story.

[PMRpro Ambassador in reply to Marijo1951]

I have to say, whatever age they are I find it difficult to believe a GP doesn't recognise the symptoms of GCA as something that needs investigation not ibuprofen (as we've been told by a new member this morning). I may not expect them to know great detail - but even the paramedics in Yorkshire are taught to recognise the signs and symptoms.

[Marijo1951 in reply to PMRpro]

Mine told me I had posture problems and wanted me to see a physiotherapist. I was lucky really that I developed PMR the following month and even he could see that the terrible pain and fatigue coupled with the raised blood markers meant that I needed to see a rheumatologist.

[susieq051 in reply to Marijo1951]

Thanks for that info. I did manage to call asleep. Felt better in the afternoon. I have found that keeping a journal by my bed and writing helps me calm down.

[Constance13 in reply to susieq051]

"Call 'a'sleep would be good!😂

[Hidden]

Recently a couple of members have reported that tbeir gp recommended the forum which suggests they look at it. Of course there is the other side.... The members who are told to take no notice of it by their doctors! There could be a third way.....drs take their patients word its helpful and just pass the info to new patients regardless of their feelings and use of Web based resources.

I hope you managed to drop off. The middle of the night can be frustrating and LONG. 😴😴😴🌻

[Yellowbluebell in reply to Hidden]

My gp asked where i was getting my info from, i told her and now shes recommending the forum to her other patients. Shes also looked at the other hu forums and sending people there as well.

[Hidden in reply to Yellowbluebell]

Good thats why the health basis is vital.

[Yellowbluebell in reply to Hidden]

Exactly. If it went back to the beginning of the year i don think t any gp would have been impressed no matter what advice we were giving

[borednow in reply to Yellowbluebell]

My GP told me to be careful what I read online. He recently congratulated me on managing my PMR so well. I told him it was down to this site and he went very quiet!!

[Hidden in reply to borednow]

Nice One 😉

[KellyInTexas in reply to Hidden]

I’ve told my GP that you’ve kind ladies have taken me on as a polyarthropathy stray😉 while I try to manage learning how to manage diet with steroids to avoid the medical ( and now waistline- that is now starting just a little bit..,)

He was pleased. He did not know that the body sheds cytokines naturally at 4:00am , and therefore it was a good idea for patients to set an alarm at 2:00am ( with a small bit of yogurt / banana) for the dosing, to get ahead of the shedding.

I’m now on the injections- because we don’t have enteric coated ( Rayos brand) in the USA. I may look into the gluten free preservative free ones if I stay on them.

My GP is very glad for additional help, because my Rheumatoligist has turned this responsibility over to the GP, which is a little unusual in the USA. ( I live in a more rural community, about an hour and a half from San Antonio, where the Rheumatoligist is- so the Rheumatoligist sends me to young local GP for injections, which initially made him slightly nervous, as he’s managing the coal face grit and grime of the day to day lupus and hematology high intensity anticoagulation ( warfarin and heparin bridging) / INR management with me- so any para support in education and preventative medicine in aiding the ultimate goal health as much as possible by qualified sources is very much appreciated.

On a sadder side note: My GP’s wife has been recently diagnosed with lupus, ( nephritis) and they have two young boys. He’s glad to learn about the details of this.

[Yellowbluebell in reply to borednow]

Yes theres rubbush out there but this forum does try and stop most of it getting through. It will teach your gp not to assume all info online is dodgy!!x

[PMRpro Ambassador in reply to Yellowbluebell]

I wonder what makes them think that we can't find reliable info online - or don't they use the web at all? Patient.info was set up originally by some doctors in the NE of England to provide reliable medical information online so it could be accessed quickly. They have information sheets on all sorts of things - for professionals and patients. No shame in using them - and maybe some of the awful stories we hear about GCA patients losing their sight after not being diagnosed could be avoided.

[Yellowbluebell in reply to PMRpro]

Its totally unacceptable that gca is still not diagnosed early enough. Especially when people are preaenting with text book symptoms. Negligence in my eyes..

[PMRpro Ambassador in reply to Yellowbluebell]

Oh definitely. But what do you do when people don't think laterally? There are multiple reasons for some symptoms but if you used google I bet GCA would appear fairly high up the list.

[Yellowbluebell in reply to PMRpro]

I have used the nhs symptom checker and. pmr came up so pretty sure gca symptoms would get a definite diagnosis as well

[susieq051 in reply to PMRpro]

I agree, I don't have a medical degree but even in the hospital website this clinic it have every symptom I had and the go still disagreed with the rheumatologist

[susieq051 in reply to PMRpro]

My rheumatologist will be shown this website about real people with case symptoms I know he will have no problem but I want to see the look on the other doctors faces. I will tell them that these people from thousand s of miles helped more then anyone. Because be fire any of us do anything we use our minds to investigate and ask questions that is the only way to get anything dobe. Do it on your own.

[susieq051 in reply to Hidden]

I did manage to get back to sleep. I did feel a little better in the mid-afternoon.

[Hidden in reply to susieq051]

Good. Can't beat sleep.

[HeronNS in reply to Hidden]

Time change here this weekend. I had no difficulty at all sleeping that extra hour! The cats, on the other hand, couldn't understand why their breakfast was not instantly forthcoming. 😾😾

I've been tapering excruciatingly slowly for many months now, and was hoping today would be my last 1.5 dose but I'm afraid it may not be. Sigh.

[Hidden in reply to HeronNS]

Oh dear. Just keep resting!

[HeronNS in reply to Hidden]

Went to an art workshop yesterday. Lovely weather so walk was great, but because of weekend ferry service had a choice between being five minutes late or twenty-five minutes early. I opted for the latter and went into an art supply store on my way, where I found, of all things, and quite unexpectedly, exactly the kind of wheeling cart (what are they called?) I've been looking for. It moves smoothly and of course had hardly anything in it, but it did mean I was using my body differently when I walked, so maybe that's why I feel so sore this morning?

[PMRpro Ambassador in reply to HeronNS]

Is it to push or pull?

[HeronNS in reply to PMRpro]

Unfortunately, athough it has four wheels it is more comfortable to pull. I bought it so I can take laundry to the house to hang on the clothesline, without having to use a car, in the interests of not using fossil fuels. So I'd been looking for something quite large, with very sturdy wheels, waterproof lining and not too hideous. The walk to the house is fifteen minutes so not too bad, and I can take my time. I had to go further yesterday and didn't want to miss the ferry on the way home so hurried more than was good for me - and made it with about a minute to spare!

deserres.ca/en/rolser-imax-...

[PMRpro Ambassador in reply to HeronNS]

Was going to say the same as Poopadoops - same with suitcases on wheels too. Bad for shoulders ...

[Hidden in reply to HeronNS]

It does take a while to adjust but if you can make it push rather than pull its better for your back.

[HeronNS in reply to Hidden]

The handle is not quite high enough for me to remain upright so the strain on my back would be bad. It simply glides along, though! Will be interesting to find out what it's like with a load of wet sheets and towels though! Maybe the change in balance will make the pushing easier.

[Hidden in reply to HeronNS]

They are less wiggly when full.

[bunnymom in reply to HeronNS]

I think of you Heron as we are getting our house ready ready to sell. We aren't listing till we find one we want. You inspired me it can be done. No remodel tho.

[HeronNS in reply to bunnymom]

Good luck!

[alvertta]

I have told all my doctors about this site. One said she would look at it.

[piglette]

I think there are a lot of people who do not have PMR or GCA who feel exactly the same about doctors checking up on discussion boards. They seem to find it an effort to even check up on the notes of their patients.

[Hidden in reply to piglette]

Too true...