I hasten to add that this relates specifically to my experience and is only posted to update and inform people on where I am at present. If it is applicable to others then all well and good.
The background is that I am 11 months into GCA and PMR which probably started some 2-3 years prior, or even longer, before diagnosis. I was a fit cyclist with what seemed to me an unlimited store of energy and stamina and a physical ability to undertake tasks men half my age were often unable to manage. How the world changes. I can no longer manage a short ride , have lost 60% of my leg and arm muscle, am fat around the middle with a puffy face and neck. No fast twitch muscle(pred. takes that first) so I stumble if I try to react fast and can't run as the legs don't respond fast enough. I'm also unsteady on my feet probably due to losing leg strength. The fluid build up in my legs, ankles and feet is manageable but affects mobility somewhat and the thin skin, bruising and easily bleeding damaged skin on arms and legs takes a lot of managing. I was going on to say that after 8 days of improvement I felt that the inflammation in the blood was getting under control and that splitting the dose of 30mg again to 20 at 1-2am and 10 at 2pm was controlling emerging symptoms of GCA and PMR. However, after a good start and feeling up for a good day my left leg dragged or gave way slightly coming down stairs. Skin missing from forearm and both shins and suspected rib fracture but generally ok. Managed to take Rex for his walk when I had cleaned up and felt ok as I'm getting used to managing the damage to skin. You can't run a farm, chop wood, keep the water system from spring working and keep things going without the odd knock and bump. Lost my cycling mug in pieces also.
So to the exercise that seems to work for me after all this drama. I'll add it to my programme of exercise. It is a standard upper leg stretch which holds the ankle of one leg and bringing the foot and lower leg up tight to the upper leg. This allows you to stretch the quadricep in the thigh and frees the ankle but also opens the chest and frees up any stiffness or locked shoulder socket especially if you rotate to allow this. I do this whilst lying in bed before I get up and hold it for some 5-6minutes until the stretch has eased all the tension and the breathing gets deeper and easier. I then relax the leg and let everything settle for 5 minutes before repeating with the other leg. I will use the recovery period to rotate ankles and stretch the calf muscles which are slightly contracted by the thigh stretch. I repeat this a couple of times and find it helps with clearing some retained fluid in the legs as well. I spend at least an hour each morning doing this and it gets my body working properly to start the day. I'll obviously have to be more careful coming down stairs now in future. It's a real pain losing strength but it is just another thing to adapt to. I can feel the heart working harder and the blood pumping in the legs which must help clear lactic acid but also assist the lymph system which helps clear retained fluid. Anyway it works for me. It is noticeable how everything is so interconnected and very hard to say why this helps with improving my breathing but it is undeniable. Despite a deteriorating physique by keeping everything working and flexible I am hoping that when I can radically reduce the pred. It will enable me to get back to a better condition faster. That's it for now . Sorry if it is a bit long.
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cycli
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I just happened upon your first post. I cannot thank you enough for sharing your experience. I am in the early stages of tests, doctor visits and possible diagnoses following a "horrendous" 3 months of symptoms. We share the disappointment of not being able to enjoy our love of sport.
It is unbelievable that I was competing in Triathlon at World Masters GamesNew Zealand (F-70-79) such a short time ago. We share the beauty/exhiliration of cycling in the Dolomites. My biggest challenge (The Death Ride) is also my most most vivid memory (I still can close my eyes and feel the challenging climb, feel the breeze, even smell the pines!!). Now the pain, muscle wasting and ALL the other terrible symptoms challenge me. . .
My plan is to buzz back to your other posts to learn from your experience and maybe gain a glimmer of HOPE on my journey.
Culo. Thanks. PM me and we can chat. I started this club in 2000 ccashwell.co.uk/ I know the Pendletons and Trotts whom I cycled with and some Iron man and triathlon people who represented GB. I'm a BC coach and so happy to have done what I did. Happy to share experience and offer hope. It is hard to see and accept what is happening but there is always hope. You can't fight it but you can adjust and accommodate until in a position to recover. it won't be easy or comfortable or pleasant. The deterioration is quite shocking but also interesting and a challenge which I believe you will embrace like me. Understanding what you can of this disease and taking good advice from others here will assist you. Read, learn, accept, adapt and try to work out how to live a reasonable life whilst waiting for remission. Good luck.
I’m sorry to hear you’ve been having a rough time. Take care on those stairs!
I so identify with what you say about muscle wastage. While I’ve never been strong (I was a PE refusenik at school and have had some degree of myasthenia since I was about thirty) - despite that, I can feel what strength I had diminishing. I used to puzzle over my mum, in her eighties and nineties, claiming that everything was heavy (from a biscuit to a plate to a handbag!) . Increasingly now, I feel that. Even unpacking the dishwasher, I steel myself to lift a pan.
Like you, though, I feel it’s important to keep what ability I have. I do stretches too (not so much as you), and now I can’t really lift weights without bringing on pain, I do the same bicep curls etc, but without weights. I’m trying to keep some strength and flexibility for the long term…..🤷♀️
My father was a fitness instructor in the army and he kept mum moving while he was alive. Thinking about it, it was mainly after he passed away, that her strength and agility deteriorated.
Thanks for the inspiration and don’t let the farm do you in (I know it’s difficult) xx
Hi Nextoneplease. Just loving these curved balls that keep coming. I think the farm keeps me motivated and don't mind the work when I am up to it. The cracked rib has rather cramped my efforts at present. Busy cutting and gathering enough stone slates of right size to try and finish the south face of the barn I'm reroofing. Going to turn it into a weaving studio for my wife. Then I can finish off the barn conversion for my machine shop and get back to making some of the furniture designs I have wanted to make whilst having to make commissions for clients and blue chip companies. Lots to plan and hope for. Great being retired but didn't plan for this disease.
Wow! That’s quite some busy, and physically demanding, lifestyle you have there 😳 Know what you mean though, if you love an activity, it’s easier sometimes to work through pain and discomfort (my grandchildren do that for me, then I collapse when they leave 😉).
Love the idea of the weaving studio and the furniture making 😊 More power to your elbow (and ribs, and, well, everything really).
Take care and don’t overdo it. Guess you write a bit for balance?
Balance has never been my middle name for which I am actually glad. Trouble was mine. cerdan.co.uk this was my company and you can see what I designed and who I worked for. Lots of fun and good times. One of the top rated designer makers of today and showed with La Trobe Bakeman, John Makepiece, Andy Peters, Martin Grierson, Andy Varrah and so many others. Now a retired farmer. ann's weaving on there also
Some gorgeous stuff on there cycli 😊 The weaving looks great too. The closest I’ve come to this is tapestry, which I loved doing - but I struggle with eyesight now, unless the light is good.
thanks for taking the time and the nice comments. I miss the challenges but not the pressure to make to cost and schedule. It will take a lot of effort to get it all up and working again but worth working towards.
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PMR - Diet and Exercise
Fluid Retention adding to my walking difficulty
Exercise at the bottom of the scale.
Problems with leg
