Hiccups along the way!

[Kiwisufferer2019]

WELL so much for a successful taper. The best laid plans of mice and men..... Just got the back right and developed acute pain in the groin, Dr suspects stress fracture of pelvis. I probably should have pressed pause on my taper, but was so excited with getting down .5mg, I kept going. 4 weeks in and going good, woke very early this morning with sore jaw, headache, aching legs, sore neck....... couldn't get comfortable so up at 5.30 and with a banana took 15mg pred then my pain meds for the pelvis and back to bed with my hot wheatbags. Am feeling a bit better an hour and a half on. So will arise and make my coffee!!!. I will go back to 9.5 tomorrow, obviously I need to stay on that for a while.

On the weight subject! I have put on 20kg in 4.5 years of pred. I don't have carbs, only the odd banana. But it's been incredibly hard this past year with all the changes in my life. One year last Tuesday since I lost my husband and one year yesterday since I moved house. The 8 years leading up to that upheaval was filled with operations for my husband's vascular disease and then Melanoma, advanced melanoma and then metastatic melanoma. If someone had told me at the beginning of my PMR journey to cut out carbs I may have not put on nearly so much weight. I am so careful now but I don't seem to lose any. Sitting waiting for these bones to heal doesn't help. I couldn't get in to see my orthopedic surgeon until 2nd of April. I will be healed by then. I am lucky I've had a lot of visitors which helps, I can't read as I just nod off. Well Goodluck to all the lemons on toothpicks! Hopefully we'll a have some success! I just feel bloated and horrible.

Janis.😤😤

[Kiwisufferer2019]

Psst I'm not 74 yet, another 2 weeks at 73!!

[PMRpro Ambassador]

Unless you are eating only meat, fish, eggs and cheese it is very difficult to eat no carbs - even salad leaves add up! When Snazzy and I were aiming to lose weight, if we ate a banana in a day, that was our entire carb allowance for a day.

If you keep a diary, weigh your food and calculate honestly what you are eating - sometimes it can be a nasty surprise.

[Kiwisufferer2019 in reply to PMRpro]

Thanks PMR PRO I'll try keeping a record in my diary and be a bit more mindful. At the end of the day I'm not going to stress too much, I've had enough of that to last till eternity!take care. 😊

[PMRpro Ambassador in reply to Kiwisufferer2019]

You don't have to do it forever - just make sure you are eating as little carb as you think. If you aren't, adjust a bit and then the weight should go, probably slowly but it will go.

[Kiwisufferer2019 in reply to PMRpro]

Thanks PMRPro, I'll be more vigilant.

[DorsetLady PMRGCAuk volunteer]

Make the most of those 2 weeks at 73! .. or not…. and who’s counting anyway- it’s just a number. 😊.

Past year has been very difficult for you, let’s hope the next one’s a vast improvement 😊…and happy birthday- when it comes..🥳🎉 - but maybe not too much of this 🎂

[Kiwisufferer2019 in reply to DorsetLady]

It'll be a few🍷🍷🍷

[Kiwisufferer2019 in reply to DorsetLady]

I'd rather have thus🍷🍷

[Kiwisufferer2019]

Thanks DL, yes it is just a number and it doesn't worry me, just a privilege to get there, so many don't make it, so I'm very grateful! Hope you are keeping well(as can be expected) any tips for swollen ankles? I think it's just the heat as quite a few friends have had them too. I try and walk around at regular intervals and then lie with them elevated higher than my heart. I was sad to see Johnnie Erwin passed away, he fought bravely to the end. I always likedwatching him on TV. Well I'll get back to watching NZ VSOUTH AFRICA, first test at Mt Maunganui near Tauranga. Stunning day for it and not so hot today. I look forward to reading your posts DL, thank you for sharing your wisdom.

Janis

[PMRpro Ambassador in reply to Kiwisufferer2019]

Have you ever had any signs of arrythmia - palpitations for example? I had an ablation for atrial fibrillation nearly 4 weeks ago. My swollen ankles that had bothered all except the cardiologists have gone! Skinny feet all the time for the first time really since PMR started though they had been notably worse in the last couple of years. And I have had atrial fibrillation since PMR started though very very occasional and mild at first.

[Flivoless in reply to PMRpro]

Hello Pro, do you think that PMR or Pred was the cause, or contributary factor to developing atrial fibrillation? Only I developed the problem last October - 3 years into PMR - with a heart rate of a constant130, leading to heart failure. I had the lesser op, cardioversion, which seems to have worked but they have kept me on the list for ablation just in case.

[PMRpro Ambassador in reply to Flivoless]

PMR - I had symptoms long before I was offered pred, Flares of PMR have always been accompanied by more a/f and the cardiologists were confident it was related to the autoimmune part of PMR damaging the sinus node that governs heart rate. Part of the reason I needed so much pred was to manage the a/f better.

[PMRpro Ambassador in reply to Flivoless]

Forgot to say - mine was often spiking to 130 but tended to hover in the mid-120s and up to the bivalent Covid jab never lasted more than a couple of hours. After the jab it steadily lasted longer and longer until it was up to 12 hours a day. Took a few months to see the electrophysiologist and then it was to be 3 months wait for the ablation - which turned into 6 and then the date in December coincided with the one and only strike here! So another month to wait. But the change of medication to Flecainide helped a lot, Wasn't perfect though. Do hope this has worked permanently - but I'd have another if offered.

[Kiwisufferer2019 in reply to PMRpro]

No I haven't had anything like that at all and feet have only swollen in the last 10 days since the really hot weather set in. I'll keep them elevated, and hope they come right. Otherwise I'll have to see the Dr.

[PMRpro Ambassador in reply to Kiwisufferer2019]

Have you been taking extra salt or carbs recently - that made it worse for me. 3 days eating out and they turned into footballs!

[DorsetLady PMRGCAuk volunteer]

Enjoy the cricket…we’re in the rugby season -so 6 Nations tournament started this weekend.

Never watched Johnnie Irwin, but very young, so sad for his family.

Sorry to hear about your ankles - probably due to you not being able to walk about much, unless it’s also down to any tablets you’re on- just raise them as much as you can, try and be mobile[ not easy for you at moment] and drink water, watch salt intake seems to be usual advice.

There are lots of posts if you type ‘swollen ankles’ into search - then select posts and filter to PMRGCA forum….

[Kiwisufferer2019 in reply to DorsetLady]

Thanks so much for your advice, I am managing to walk a bit more now, and I try and get up at regular intervals and walk around. Cricket was very slow, I left it on and checked the score every now and then. NZ were 270 something for 2, it was a bit like watching paint dry. I did hear the rugby results one game sounded very thrilling at the finish. Thanks again DL.

Janis.

[Viveka]

On swollen ankles you could get some support stockings until you are more mobile again. Also, you have had years of stress and challenges to the system and in my experience it takes longer than we think, or like, for stress and illness to work its way through. So be kind to yourself.

[Kiwisufferer2019 in reply to Viveka]

Thank you for your advice Viveka, I've actually ordered some stockings on line so hope they don't take too long to come.