First post.

[TiaPasha]

Warning, long post. 2 am and I have cleaned the kitchen now I can move, even folded the t towels neatly in their box. I could do more but don’t want to wake hubby. I have always loved my fitness, I was a runner and training for an Ironman when things started to go wrong. First joint replacement at 58 followed by another two. I quite enjoyed the Concept rower and realised how useful it was to keep ligaments etc strong. I then got the other two bit of equipment, Bikeerg and Skierg. Got the Concept 2 app and joined in all the challenges etc. I started having problems with remaining knee and was told no OA but meniscus not happy. Had injections twice a year and just kept going. The last Concept 2 challenge I did was a real toughie. 30,000 metres a day and I was in 12th place out of over 5000 people. I was super woman or thought I was. I noticed my times were getting slower and I was struggling. Then knee was twice the size it should be and I struggled to stand. Okay I thought knee has had enough, so I used a stool to sit on for the Skierg. By now my hip and back were hurting so I went to see physio who does the jab. He was as much help as a chocolate teapot. Mumbled about blood tests but said see how it goes. Then the shoulders started and had trouble getting out of bed, could not raise my arms so could not dress myself etc. Must have done something silly I thought. Saw the practice nurse and she more or less knew what was wrong when I struggled to get out of the chair in the waiting room and then walk. Had the blood tests and have been on the Devil’s tic tacs for two days. 15mg for 3 weeks then tapers down, 66 weeks. First day was not too bad, I could actually tie my own laces mid morning. 2 hours of proper sleep which I was grateful for. Second day yesterday took pills with my breaky of soya yogurt, low sugar granular and a banana. Able to get an hour nap. I knew when I woke that all was not good, rain was pouring and temp had dropped, well that is not going to hep I thought. I managed to do a few bicep curls with 2 kilo weights, got to get back the muscle that has vanished. 15 minutes on my spin bike which usually makes me happy but not that time. It did all ease up late afternoon and last night 3 half good hours sleep. I always eat healthy, always have. A big juicy orange in the afternoon is my treat, love um. Followed by Turmeric latte made with soya milk ( soya should counteract the sprouting hairs). A couple of dried prunes just in case. I put parsley, ginger, mint and water in a saucepan got it to boil then lid on turned off and left for 24 hours, strained into a bottle and I have a few swigs during the day to hopefully encourage the not needed water in my body to get hell out of me. My best purchase was two Med-Fit wireless tens gadgets, one on each arm near the shoulders really help, sat here with two glowing green lights on my arms. O yes I no longer need the dreaded raised toilet seat thank goodness, how on earth can you wipe your bottom sat on one of those things, and yes I can wipe my own bum now. lol. So that is me, early days yet and I know I will never be an endurance athlete again but as I am 70 in a few months I will just have to listen to my body.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Maybe have a look through this intro post- and not being negative, but maybe park the - ‘15mg for 3 weeks then tapers down, 66 weeks’ - on the back burner for now.

It doesn’t always work out as easy as that. It does for some, but not all, so don’t put unnecessary pressure on yourself - even though in the past that’s just been part of your life. … and yes listen to your body.

healthunlocked.com/pmrgcauk...

[TiaPasha in reply to DorsetLady]

You are probably right. So glad I found this site so I can learn as much as possible about something I had never heard of until last Monday.

[DorsetLady PMRGCAuk volunteer in reply to TiaPasha]

Join the clan - there are many members who had never heard of PMR nor GCA before diagnosis - myself included…

[SnazzyD]

Hello and welcome. There are a number of us who were very fit before PMR/GCA and some at elite level. It is a familiar story of the brain saying, “does not compute”, as the body throws out every mayday signal it can. The response taken seems like a relatively big step down in desired activity but isn’t enough, or worse still, the body is made to double down for an important event. The words, listening to the body, often means detecting an issue and applying a correction to make sure it keeps doing what is expected of it. This might be, pain killers, nutritional boosts, 5k instead of 10k or 50 reps instead of 100 but not what the body needs. Eventually this vessel hits the rocks. Suddenly one is forced to listen but also learn a different language and be able to respond in the way the body is asking. We don’t usually like the answer because it doesn’t fit with our desires and often our identity. Often this is the hardest lesson of all for us chronic doers and athletes.

The relief of Pred commonly brings on a spurt of activity fuelled by the artificial energy and insomnia of excess cortisol. It feels great to be moving again and plans are already made for when we are back! Listening to the body is difficult at this stage because the Pred has the megaphone but believe me the body is still sending out mayday signals. So my advice is to reset your benchmark for light activity right down and help your body’s immune system stop attacking the wrong bits. It is still doing so and will stop when it is ready. At this stage walking is usually good but avoid repetitive or prolonged actions. This will help energy needed to heal and protect vulnerable muscles, ligaments and tendons.

This condition takes as long as it takes, not what the plan on paper says. The reduction schedule is a starting point that will be adjusted along the way, usually slowed down. What you need to avoid is a rush to the bottom and ending back on those rocks again. This is the second hard lesson, accepting the lack of a clear end point which can come in a couple of years or longer. But, you are doing ok and yes, raised toilet seats are a blessing and a curse.

[TiaPasha in reply to SnazzyD]

I went back to bed for a hour nap with 40 kilo of Dobermann next to me. Just asked hubby to put my rower away in the garage until July. Selling the other two machines, it was fun when competing but I would not take the risk again. I can walk my girl on short walks so will concentrate on improving my walking so I don’t have to watch hubby take her out without me. Dogs know don’t they when something is not right, mind you took her two days to realise she could not jump on the bed until I was ready. The first day I could walk again and took her out she was copying the way I was walking, slowly and tentatively, it was so sweet. When she speeded up half a mile later I realised I was walking normally. She is only 23 months old and so glad I had put a lot of work into training her. She is of course fast asleep half on my lap, got to love a Velcro dog.

[SnazzyD in reply to TiaPasha]

Velcro dogs are valuable things in the healing process! I have 2 rescues, one of which whose genes are mainly Doberman but the rest of the genes lack the majesty and poise. He’s a sweetheart though.

Regards exercise, wise decision. The bar will be horribly low to start but will rise as you emerge slowly and tentatively to whatever level is the new one.

[Koalajane]

Don’t push your body too much. It won’t take it like it used to. You need to pace yourself now.

[Charlie1boy]

Yes, you’re going to need lots and lots of patience! But, if (when) you do hit problems, do keep coming back to this excellent Forum.

I speak from experience!

Paddy

[PMRpro Ambassador]

Hi and welcome - nothing for me to add to what DL and Snazzy have said except to say they really are right. Especially about that tapering scheme - the PMR won't have read it and even if it had, it would just shrug ...

Well done you for filing the exercise machines - your muscles and ligaments/tendons will thank you. They may have been strong but the usual point of trouble causing the joints stiffness is inflammation at the attachments and they become very delicate.

In my opinion this

jrheum.org/content/46/12/1552

is one of the most important papers about underlying causes of PMR symptoms.