Consultant This week

[TJ03]

So after a rough summer of ups and downs and a huge deterioration in my health about 6 weeks ago I'm back to the consultant this week to query what happened my foot and y my toes swoll so badly. Y my feet and ankles r in pain and yet the other pains are relatively good atm.

Some days I get up and I am pain free other days I'm so sore. Is anyone else like this?

I'm finally down to 4mg steroid a day and hoping I can continue to reduce in next few months.

Fingers crossed for my consultant appointment. I really hope he doesn't tell me it's arthritis in my feet.

TJ

[pmrkitty]

I wake up with no pain one day and the next day I cannot get out of bed. I'm fine one minute and in a moment can go into extreme pain, I cannot plan anything. Oh well, this too shall pass but it is not fun. Heads up and keep smiling, better days are ahead!

[TJ03 in reply to pmrkitty]

I love ur positivity. So difficult when I pain. But it's right this to shall pass.

[SheffieldJane]

Good luck with your consultant appointment TJ. Let us know what they think. I have psoriasis on my feet and my toes can swell up like sausages. I do experience arthritic pain in my ankles and knees. I am sure we all experience our own version of painful daysand pretty good days. Wet weather is definitely a factor, over doing things and good old stress.

[Grants148]

I also get good days and bad days,with ankle and leg stiffness and pain .lt is often worse when l have been walking about too much ,but sometimes l wake up with leg pain ,it is very unpredictable ,l just have to cope with it somehow and as Klaroche has said,hopefully ‘better days ahead’.

[Daisychain12]

Lots of brave people replying. I wish I could offer advice or comfort but I only have empathy for you all. Unpredictable pain yes, me too. Cannot make plans it’s horrible. Love xxx

[TJ03 in reply to Daisychain12]

It's just a case of living day to day every morning I wake and think.... mmm. How much pain have I? Some miracle days it's very little. Others I can barely put my feet to the floor to get up. Those days are the days I need to pop pain relief and struggle til it kicks in. Unpredictability is shocking. And he right making plans is so difficult cause u don't know when the tiredness and pain will hit.

I pray for recovery every day and I'm not overly religious. But if there is a God and he sees this struggle for the sake of my girls I hope he answers.

X

[Daisychain12 in reply to TJ03]

Yes. The strain on family is horrible. Trying to be brave for them is exhausting. Xxx

[TJ03 in reply to Daisychain12]

It's totally draining. X

[bunnymom in reply to TJ03]

Being a very self reliance person my whole life it has been eye opening for me to learn to rely on God so much. Each day I ask for His help and it comes. I am in it for the long haul and just live one day at a time. 2 years and 7 months pmr but I am verrry slowly getting better. I wish you the same friend. I figure I am learning some things during this trial I would learn no other way. ❤️

[CT-5012]

I can’t offer any help either hopefully your rheumy will have some answers for you. Like Daisy all I can offer is my sympathy and best wishes. As you say better days ahead.

[Nitrobunny]

Gentle hugs 🤗 I hope you are able to get some answers. I generally have pain for the first hour or so each day and the last few hours of the day with some less painful time in between to get things done. I’ve had weeks and even months in the past where pain was completely random, showing up completely out of no where sometimes. Hang in there. I hope and pray it gets better for you!

[PMRpro Ambassador in reply to Nitrobunny]

Have you tried splitting your dose? That is a classic sign the antiinflammatory effect isn't lasting the fill 24 hours and splitting does help a lot.

[Nitrobunny in reply to PMRpro]

Regardless of the dose it takes me a good half hour of stretching and gentle movement to get going. Other than that I feel the best I have in well over a decade. My last three labs has been perfect including my CRP and ESR which amazes me. The end of the day pain and tiredness is purely my fault for overdoing it all day. When I was on higher doses I did split it and it helped. I tried it with the lower dose and it didn’t help. I feel great and I’m in no hurry as I continue my taper. I know many people have said they stay at 5 for an especially long time. I plan to continue in an über slow fashion and see how it goes.

[TJ03 in reply to Nitrobunny]

I seemed to have bee stuck at 5 for a long time but have finally got down to 4mg daily. I'm glad it feeling better than u had been. However at age 42 now I read all these story's and suspect I could have a long road ahead. Which does nothing for my mental health. 😞

[schmuppy in reply to TJ03]

I know this has probably been mentioned before, but you're awfully young to have a PMR diagnosis. It's not unheard of, but very unusual. Are you, and your medical professionals, confident that PMR is what you're dealing with?

[TJ03 in reply to schmuppy]

U may be right given my appointment outcome today it seems it may not be pmr

[nickm001]

Most of us wake up with stiffness and some pain. I don't even get out of bed before I do short stretch routine for legs, back, arms and neck. It takes only a minute or two, but it helps. I also go every morning for short walk and do more stretching - 30 min or so. Why is this important? PMR inflammation restricts blood flow and will cause stiffness pain and even swelling. Gentle moving/stretches throughout the day helps a lot. You have reduced to 4mg relatively quickly, perhaps too quickly. Reduction is not a race to the zero level. Pred does not cure PMR and it only manages symptoms, but you need enough to do so. If you overshoot your low target dose, over time inflammation will accumulate and you will end up with flare. Have you tried going back to 5mg for a few days and see if some of the problems that you mentioned will go away? You are at very difficult dose level. Because you had higher level of pred before , your adrenals were asleep. When you reduced below 7-8mg level, they had to wake up and start producing cortisol to top off body's needs. SOme doctors say that it takes long time, maybe a year or so before adrenals are back to normal. For that reason some recommend to stay at 5mg for 9 months or longer before continuing further reduction. You might talk to your consultant when you see him. If you try 5mg "test" you will know if you are possibly taking too low dose and that is another point that you should mention to consultant.

[Daisychain12 in reply to nickm001]

Great info thanks

[TJ03 in reply to nickm001]

At my last appointment my consultant told me to try to reduce and if it was resulting in increased pain to increase. So I've been testing it out... and I'm feeling ok with the 4mg only pain I now have is with the feet and ankles. I will wait and see what he says this week when I see him again.

Unfortunately my days r busy with work and children and my mum so getting time even for gentle exercise is difficult. Mornings r so hard as we are up and out and no spare time for stretching or exercise.

Wish I had the luxury of that as it sounds like it's helping

Thanks TJ