Swollen ankles

[madhouse1]

I’m tapering pred at a rate of 1 mg every three weeks since May. I’m now on 5 mgs and have been for two weeks. Is it usual to gave swollen ankles to the point of being stiff to move. I also take 10mgs of Omeprazole.

[DorsetLady PMRGCAuk volunteer]

Have a look at related posts….does seem to be quite common.

[madhouse1 in reply to DorsetLady]

No but will have a read x

[SheffieldJane]

Did you get your breathlessness checked out? That coupled with swollen ankles can indicate heart trouble. Please get this checked out.

[madhouse1 in reply to SheffieldJane]

I mentioned it to the Rheumy and he listened to me chest and said it was fine. It has slightly improved. Between my GP and this Rheumy Comsultant NHS care is very scary. Had a couple of conversations with a different GP amd oh my word, what a grumpy bloke who couldn't answer anything I asked him.

[PMRpro Ambassador in reply to madhouse1]

Oh yes - you can really hear heart problems with a stethoscope!

I was going to ask if it might be a flare - from your reply below I think that is the most likely reason.

[madhouse1 in reply to PMRpro]

I’m sure that’s what it is, as my pain hasn’t been controlled since hitting 15 mgs. I’m sure he wouldn’t know what a flare is As neither seem to know about PMR. She, (GP) , muted she didn’t think it wasn’t PMR but that I did seem to have pain in the right places l, on my first face to face consultation but said she wasn’t sure.

I said well if not PMR what is it then she said she didn’t know. She’s the one who referred me to Rheumy so goodness knows what she out in the letter.

Rheumy said the pred is killing me as it’s shortening my life. I said I was the wrong side of 21 to worry about shortness of life and would rather have quality not quantity - head down to his desk again sat in silence.

It seems I have to play his game and get to no pred then he might put me back in it.

I could bang their heads together I really could. Ankles are not swollen today thankfully, but still feel weary, head is aching along with right leg thigh muscle and left shoulder up into my neck.

I’ve some spare pred as, although they’ve told me to reduce 1 mg every three weeks until off them altogether, they are still churning my fortnightly scripts out for 9 mgs a day (it says 8 mgs per day in the boxes) but the number of tabs are for 9😳🙈. They shouldn’t be in charge of themselves never mind meds.

They’ve had me locked down to 2 weekly repeats so no spares to deal with a flare so at least I’ve gained a few spares through their incompetence. 😉.

I thought about asking for a second opinion but would I get someone who was any better as this chap was and knew any more. The nurses said he was newly qualified, very thorough and ‘we’ve not broken him yet’

I’ve so much to do as just finished working in childcare for over 40 yrs from home so need to clear everything out and get our house cleared out and decorated but that’s a no go for now. X

[PMRpro Ambassador in reply to madhouse1]

Why can they not get the message that living for years in constant and unmanaged pain is not encouraging to wanting to live a long time!!

Put up a post asking for recommendations, saying whether you can afford to get a private opinion and how far you would travel. That area does seem to have rather a mix of rheumies! - but I seem to remember there is a good one not too far from Derby.

What is the headache like? Where?

The shoulder may be causing the headache - possibly via the neck muscles. Is physio or therapeutic massage possible?

[madhouse1 in reply to PMRpro]

Headache is a strong pain along the top left edge before going over the top of my head. I get short occasional stabbing pains in my left eye. Not necessarily with the pain in my head.

My shoulder pain is in the soft squidgy tissue immediately to the right of my left bra strap and goes up into my neck. Hurts to touch. Also my neck hurts at the front from just below my left ear going down to my left clavicle. That’s also painful to touch. Tje gland behind my left ear feels puffy and hurts too. All on my left side. Eyes are a bit fuzzy but artificial tears sometimes help. Optician said the fluid isn’t as much as they’d like so to use artificial tears.

[PMRpro Ambassador in reply to madhouse1]

The neck problem sounds very much like the sternocleidomastoid muscle and that COULD be causing the head pain too.

This the first link I could find of my regular ones:

medicalnewstoday.com/articl....

Snazzy is the expert on it though!

[madhouse1 in reply to PMRpro]

Aw thank you so much for being supportive. It’s very much appreciated. I’ll have a read now xx

[SheffieldJane]

Not really good enough is it?Do you put your feet up? It’s good for us.

Do you watch your salt intake - another possibility?

NHS doctors vary hugely. I had one that I hardly dare tell about things or I’d find myself in hospital. Push for the care you deserve.

[madhouse1 in reply to SheffieldJane]

Yes feet up a lot of the time as I’m in pain with my right thigh muscles all the time, it hurts to walk and stairs are now a ‘one step at a time and sometimes finish them in hands and knees again now. I’ve no energy to do much all the time since coming down. Stacked loads of weight on round my neck and tum but arms and legs going thinner. Headaches are more frequent than ever and just not able to do much which is so frustrating. Work is a virtual no as I design and create cakes and can no longer do much icing as my arms can’t do it as they’re not strong enough and standing working at a table for hours is now impossible. As self employed there'slittke or no financial help either. I’m going to send an email to this Rheumy’s secretary asking why he is doing w hat he is when the advice from here, their own guidelines etc is completely at odds to what he’s telling me to do. If pain gets any worse or swelling doesn’t go down I’m off to A & E. I’ve always watched my salt intake and dint have sugary things despite at the moment craving both. Thanks for your comments Sheffield Jane. The medics down here in Derby just don’t seem to understand this condition at all. Sorry for the long moan but feel so fed up.

[SheffieldJane in reply to madhouse1]

Good plan! Onward.

[Snerd]

Dear Madhouse! My heart goes out to you in all this frustrating misery. I am praying for you .❤️

[madhouse1 in reply to Snerd]

Thank you ❤️

[herdysheep]

Not surprised you are feeling fed up. Have you been back to GP with a full list of symptoms you are feeling at the moment? This tendency by medics to deal with only 1 thing at a time does not help in accurate diagnosis!

I suspect my occasional thigh pain and muscle mass loss from arms and legs can be laid at the door of statins, but then everything has side effects of some descriptions. It just helps to know what is what. I would suggest a more thorough exploration of the headaches, breathlessness and swollen ankles would be of benefit rather than just listening to your chest!

Good luck

[madhouse1 in reply to herdysheep]

Thanks. I’d given up with him by the time he was wielding his stethoscope as he had not answered any my questions about hIs mystical diagnoses, other than to say; “I just know”. PMRpro said at the time he’d gone to work with a Crystal ball. He said I’d got osteoporosis and when asked what evidence that was based on he said he just knew but there was nothing in his computer screen. A Dexa scan of my left leg said I didn’t and so it’s gone on. I’ve mentioned breathlessness to several doctors, nurses and Rheumy but nothing other than listen to my chest. X

[Frewen1]

Can only imagine how upsetting this all is for you, and send you warmest sympathy... very much hope you get some answers, and more importantly some relief, as soon as possible

[madhouse1 in reply to Frewen1]

Thank you Frewen1, I hope so too. I need to up my pred until things settle but that’s not going to happen while these doctors play their silly games and don’t know what they’re doing. Xxx

[LemonZest11]

I feel so sorry about what you are going through, I experienced many of these confusing and painful issues until I finally found a Rheumy who knew about pmr, gca, lvv and the rest. It has taken 18months with her (after a year of hell with others) to turn things around. Please follow PMRpro's suggestion of asking for recommendations, a good Rheumy can change things. You could try mine but you'd have to come Downunder. 🙏

[madhouse1 in reply to LemonZest11]

Oooh a trip down under sounds so inviting!😉. Xxx

[LemonZest11 in reply to madhouse1]

Haha, you're welcome to stay with us!! Wishing you all the best on this rugged journey.

[madhouse1 in reply to LemonZest11]

Thanks LemonZest11. I’mSure something will turn up. I’ll keep you posted. Xxxx

[eternalgardener]

My heart goes out to you! You are not alone in your quest to feel better. I messaged my Rheumy last week to ask if I could increase Pred until I know what is causing the extreme pain in my hips and legs, but he said no and he wants me to continue to taper. I am down from 12 to 7 now. In May I had a paddle type spinal cord stimulator (SCS) implanted because I could not stand for more than about 10 minutes without pain and it was becoming more difficult to walk. I have a severely degenerated spine. The SCS has eliminated nerve pain, but the ability to stand has not improved that much and now my hips and upper legs are sooo painful - a pain the SCS doesn't touch. My rheumy says it is not PMS. As for swollen legs, before the SCS, my feet and lower legs were very swollen, red and itchy. Lasix, reduced salt, etc. did nothing. Strangely, the swelling has totally disappeared since the SCS implant. It's great to have my normal feet back, but I would like to know why, and why I have such pain in my hips and have more difficulty walking than ever. I've asked to be in a wheelchair, but every doctor goes appoplectic and says it would shorten my life. I asked if that would not be a good thing if I have to live like this? Actually, I'm trying so hard to get better so I can care for my husband who has dementia. It's really becoming difficult.

[madhouse1 in reply to eternalgardener]

Aw I hope you find some relief and can care for your husband. There aught to be some enlightening of the medics so they can understand amd treat us properly. Xxxx