New diagnosis today , need your advice and guidance please .

[Staffieblue]

I have just received a letter from my visit to the pain clinic , it states my pain in buttocks and hip as right sided trochanteric and right sided ischial bursitis .

I am in constant pain really , even uncomfortable in bed .

Waiting for appointment at day clinic for injections under X-ray .

My left knee is also swollen has been like that for 2 months at least . It’s not hot to touch but is painful , had this x rayed yesterday , managed to get to see a different doctor that said straight away why hasn’t this knee been x rayed before ?

I am down to 5 mg prednisolone as instructed from my usual doc awaiting rheumatologist appointment .

Do you think I should up my pred ? Would it help me . ? I’m on continuous paracetamol and take co codomol at night , this helps my muscles relax

I try to keep mobile as if I don’t it’s so painful , I struggle getting up from seated some said on here that they walked like a penguin that's so right .

Getting out of the car is awful especially if I have driven for a period of time .

I sleep under a light blanket now can’t bear the weight of my quilt on my legs and hips .

Sorry it a such a moaning post want to tell my self to shut up now .

Thanks for being here 👍

[Mayadill]

A good couple of years ago I got fed up with my full-size (single) duvet and moved to a mini-one, teens, which is tads easier to insert into its cover, launder, and of course lighter. How tall are you? Adult is 200 x 135 cm. Kids 150 x 120 cm. I generally fling a throw over the end of the bed in case my toes poke through but mostly they don't. Finding a cover is probably the hardest part - unless you love teddy bears, racing cars, the galaxy or My Little Pony! Plain ones do exist.

[Staffieblue in reply to Mayadill]

Hi Mayadill , yes I have a couple of lovely soft blankets , don’t want to give up my quilt though 😊. Thanks for your suggestions

[PMRpro Ambassador]

I don't know that upping your oral pred would do much - it doesn't help me and I have exactly the same problem. Steroid injections help me but the pain clinic won't do one as I'm on anticoagulant therapy. I get some benefit with paracetamol but not a lot - when it is really bad 800mg ibuprofen and sitting with a hot water bottle over the really painful bit does help - must be 800mg though to start with as that is the flooding dose. My rheumy approves using it more than occasionally if I also take a PPI (omeprazole or the like).

I use a summer weight single duvet all year round with a blanket for feet in winter. But my summer duvet is only 3 tog so very light. I find most UK duvets far too heavy, I feel trapped.

Don't worry about moaning - if you can't moan here, where can you?

[tempusfugi in reply to PMRpro]

So, is this all part of PMR then? I mean could those various pains from bursitis be dealt with, without steroids? I realise PMR is a generic term for an underlying illnes/problem but I'm just a bit confused about different terms, I guess. The pain I'm getting in my arms and hands at present aren't quite the same as those I originally had when PMR diagnosed, so I haven't treated them like a flare but am now thinking I should have done so (they've been getting worse over a period of weeks/months.😒 Seeing a new rheumie on Saturday.

[PMRpro Ambassador in reply to tempusfugi]

Possibly. Just plain bursitis can be improved by reducing the activities that make it worse - stairs, walking etc - and some physio will help. But when it is part of PMR, as it can be, the inflammation of the PMR seems to feed it and makes it harder to shift, Oral pred doesn't get to the site of the inflammation in high enough concentrations to suppress it. In most cases it will eventually fade away but it can take a long time. I have had steroid injections into the area - soft tissue not into the joint, much simpler - and also ECSWT (extracorporeal shockwave therapy) which takes time but does work well. If the bursa gets infected it can be a real problem. And if all else fails - surgery to remove the bursa will solve it.

[tempusfugi in reply to PMRpro]

Thanks, PMRpro, helpful as always. I shall pass this info onto that friend of mine who I mentioned recently - she's down to 1 mg and had a flare up. Your response to that has heartened her and she's not feeling so downhearted now. She doesn't look at this forum or talk about PMR much - has tried to sort of ignore it. We're all different, I suppose. Thanks again.

[PMRpro Ambassador in reply to tempusfugi]

It is all very well trying to ignore it but it is a reality and not knowing about it makes things that can be dealt with feel the end of world when you don't know HOW to sort it out.

[tempusfugi in reply to PMRpro]

Couldn't agree more. I find quite a lot of people want to ignore things that go wrong with our bodies, hoping they will go away, but of course on many occasions they simply don't, and often get worse. Human nature, I guess, especially as one gets older.

[PMRpro Ambassador in reply to tempusfugi]

A major problem though becomes learned pain - the body expects something to hurt and that continues even though there is no physical reason for it. I think that is part of the problem when patients are messed about, not diagnosed, allowed to or encouraged to develop flares and it makes control harder to achieve later. Sort it out properly as soon as reasonable and it is less likely to become chronic or to need so much to sort it out.

[HeronNS in reply to tempusfugi]

Just want to chip in here with my experiencefrom a couple of years ago. My vulnerable spot seems to be neck and shoulders, and I was blaming some very real and debillitating pain on osteoarthritis. I know I have OA in my neck, but shoulders are among the few joints that have never been imaged. Anyway, after some rather futile physio, it occurred to me one day that the pain was a lot like what I'd had shortly before my (very delayed) PMR diagnosis. Was only taking 2 or 3 mg at the time so I tried 10. To my surprise this resolved all that shoulder pain in a couple of days. A couple of years later, and my pred dose back down again, there's been no recurrence of the shoulder problem. At that time I also had an unexpectedly very high CPR reading, which has since gone right down to normal. So if the other things you try seem relatively ineffective, why not try a pred challenge to see if it helps? You'll know very quickly if it is PMR. I didn't have to stay at 10 more than two or three days although it did take a while to get back comfortably below 5, and have been around 2 again for quite a long time.

[tempusfugi in reply to HeronNS]

Yes, thanks vm HeronNS, for your observations. I shall see what this new rheumy says on Saturday but, whatever, I suspect I/he will put my dosage up (8.5 mg at the moment). I have been told that I am an 'atypical PMR patient and that I might have mild carpal tunnel syndrome indicating emerging rheumatoid disease'. Along with that I have a report that says 'if she strugges to get off Prednisolone because of re-emerging polymyalgic symptoms or features of inflammatory arthritis then I think we shoud add in Methotrexate as additional immunosuppression'. THAT is one road I don't want to go down, particularly because Phenytoin, whch I take for epilepsy. is contra-indicated with Methotrexate, I understand.

Another report tells me that there is 'Arthropathic uptake noted in the shoulders, with a distribution in keeping with Polymyalgia Rheumatica and bilateral trochanteric bursitis and ischial enthesopathy. Interspinous uptake seen within the lumbar spine'. So you see, there's probably v good reason that I'm suffering at the moment! I hadn't really taken all that on board because when I first received the report, I and 'they' were more worried about 'two upper lobe lung modules which could be inflammatory or represent low-grade adenocarcinoma'. When a CT scan showed no sign of these three months later, you can imagine my relief. Onward and upward, I guess.

[PMRpro Ambassador in reply to tempusfugi]

Blowed if I can see why they regard carpal tunnel as associated with rheumatoid disease rather than PMR. Each to his own,

[Staffieblue]

Ok , I do understand your thinking , I have tried 400 mg of ibuprofen when I was desperate to get a bit of relief only the once though .

Yes that’s how I feel in bed can’t wear pjs as they make me feel trapped as well .

I do take omeprazole daily .

Thank you once again for your invaluable advice I feel reassured . Take good care 🌷🌷🌷

[Staffieblue in reply to Staffieblue]

Thank you PMRpro

[PMRpro Ambassador in reply to Staffieblue]

Needs 800mg the first time - all the receptors have to be occupied, then you just top up

[5lupins]

I have used a tens at base of spine for all pain below the waist. I had severe bouts sciatica and sacroiliac pain twenty years ago and I still use a tens as soon as any slight discomfort appears.

I feel you may well have tried one but thought I would mention it.

[Staffieblue in reply to 5lupins]

I do have a tens machine forgot all about that though ,will seek it out , thank you 5 lupins for your helpful advice ,

[nuigini]

Please don't apologize for the moan. We all need it from time to time.🤗

I get trochanteric hip bursitis from time to time, sometimes on one side, but often bilateral. Unlike PMRpro icing seems to help more than heat, each person is different. If Tylenol doesn't help with pain a single dose of 800 mg of Ibuprofen often does the trick. Resting is recommended, but once able mild exercises really helps. There are loads of sites on the internet showing exercises for hip bursitis.

Mild arthritis acts up in one knee from time to time and I treat it in the same way, and use a neoprene sleeve for a few days. It definitely helps to move regularly.

Feel better soon.

[Staffieblue in reply to nuigini]

I do appreciate your advice will try your suggestions , thank you nuigini.

[nuigini]

I forgot to mention, I keep a cane on hand just in case to help with walking. Also, physiotherapy can sometimes help.

[Pixix]

I have trochanteric butsitus on one side & acute sciatica on the other…& constantly frozen feet from Raynauds & bad OA in my feet. I understand what you’re saying! I can’t take ibuprofen, but currently on time release Tramadol. I can’t honestly say it makes much difference, the best thing has been a depo medrone injection for the Bursitis. It hasn’t gone away but pain is less. I can’t get into the car a normal way, but find if I put my bottom down on the seat first, then swing both legs in together it is a little easier, I have a walking stick, but hard when both sides have issues. Heat helps, & now with great weather here the sciatica is a bit better during the day, at night I can only tolerate a 5 tog very thin quilt, sometimes I just put a light towel over. It’s lousy, I suffered for six months before the injection (other medical issues were more important)! But my GP did the Bursitis injection in the local surgery. Good luck, & yes, I would like to moan, too!!

[PMRpro Ambassador in reply to Pixix]

Er - that is how we SHOULD get into a car! The "normal" way puts immense strain on various parts of the body and in particular the hip you put your entire weight on as getting in as pointed out by the physio here

google.com/search?q=how+sho...

It is one argument that we need a Blue Badge because the door being wide enough open is a pre-requisite.

[Pixix in reply to PMRpro]

most people I know get in one leg first, then bottom then the other leg. Since I changed from doing that I’ve watched in the forest car parks & they all get in that way.I thought I may be helping…but I see I need putting right, as usual. Maybe I’m a bit sensitive today, PMR, my first real holiday from Saturday, & it may yet be cancelled. My health is poor right now…

[PMRpro Ambassador in reply to Pixix]

Which is exactly what the video explains from an independent and qualified source. Again, don't worry, I'll stop commenting on your posts.

[ImC_ in reply to PMRpro]

also, isn’t this the elegant way that people get taught at Finishing School? (Not that I’ve been!)

[PMRpro Ambassador in reply to ImC_]

Possibly, or other fancy schools, like the technique of a bloke buttoning up their jacket as soon as standing ... I tend to be a bit eye roll-ish in viewing that technique of exiting the car also allowing everyone a really good view of a lady/s legs! Unless you are in a Rolls or whatever where you get a hand out and just bend your head slightly to step down ...

[Staffieblue in reply to Pixix]

Hi pixix thanks for sharing your thoughts .

It’s helpful to hear how other fellow suffers get some relief . I can’t tolerate tramadol it makes me sick . Hoping that the injections help when I get them still waiting to hear when that is .

I am wishing you well , for your upcoming holiday hope you do get away all the best .

[KASHMIRI1]

I have the same diagnosis as yourself and upping pred made no difference at all. I have physio exercises which help a bit. I take two high strength cocodomol in the morning and then paracetamol every four hours when it's very bad. It's horrible isn't it.

[Staffieblue]

Yes it has got worse the last six months or so .

It’s more or less constant can’t do without pain killers . Had to give up my job as well .

Thank you for your reply , I have booked in for physio just waiting to hear .

All the best Kashmiri1