Well everyone it is 4 months on and still relatively housebound but now stable . As you may have read in another thread we have moved forward and there is a really capable team of leading specialists who are looking into a recovery and management program of exercise to recover our bodies from the ravages of this condition and medication. Rex, my beautiful collie is no more as i had to put him down. The problem I had turned out to be cellulitis and that is now gone. My swollen legs ar almost normal now, if stick thin , compared to my cycling legs. Still wobbly and unbalanced but improving. Trochanteric Bursitis seems to be the current impediment but I'm managing this. All in all I am hopeful and reducing again. The bisoprolol and ramipril taken for heart issues are reduced and stopped and the furocemide is halved. Lefunomide is helping the reduction now at 20mg. no YCZ yet but maybe I won't need it. That's it for now. Just thought I would update you all and thanks for the wonderful responses and advice.
Back to square one update: Well everyone it is... - PMRGCAuk
Back to square one update
sounds like you have a plan and that is huge! good luck. Heart breaking about your dog. I do hope that when we die if something happens it is that all our pets will come racing out to greet us.
My life has been one project after another. this condition has thrown me this opportunity and I'm working towards it .
yes I too hope that all my animals race to greet me on “ the other side” when I die. I lost my old rescue girl last July just when I was being diagnosed. I miss her every day ❤️. I got a new little project rescue dog 6 weeks ago and that is keeping me focused and getting me out walking miles again.
Yes, so sorry about Rex and yes, all the pets coming to greet us, in my case rather a lot, including the hamsters!
Hi cycli,As yogabonnie said...you have a plan to follow, and knowing the steely determination you've always shown (particularly evident in your bio) I'm sure your outcomes will be positive.
Your resilience seems matched only by your willpower and I wish you every success in your endeavours to continue improving your health and well-being.
Thanks for the update. So sorry about Rex. 🌹
Keep us posted, onward cycli. X
You can be sure. So many good people here
🌸
just want to wish you the very best of luck on the next stage of your journey. I know you will soldier on positively. 🤗
thanks Artandpoetry. fun trip this isn't it
I look forward to your journey and thank you for taking us with you. Sorry about your puppy, never easy, is it? Best wishes to you and yours!
Just thinking about you the other day and wondering how you are doing. Thanks for update - always good to hear from you.
sounds very positive and with good guidance.
we are hoping so Merryfield
Sounds like an excellent team and plan cycli. Well done 😊and onwards and upwards x
as you say and rest assured we will.
Morning Cycli, good to read that things seem to be turning around and improving. You have a project to get your teeth into, which I'm sure you will see through to fruition. Good luck and hope the improvements all continue.
Well done on your perseverance and very best wishes as you continue on your plan. Sorry to hear about your dog. 💐
Glad that things are starting to move in the right direction for you, and so sorry for the loss of Rex. I know how lovable pets can be and how badly they are missed. I hope you don't mind me asking how you're managing your Trochanteric bursitis, and what symptoms you had before diagnosis. Did you have pain in the buttocks and down the back of your legs? I think I may be dealing with the same problem but it would be good to get someone's input. Thank you for your time.....
It is an awkward symptom to handle. Yes it's in upper hip and low back, mainly r.h.side. It can radiate down the buttock and leg. Mostly IT band in thigh. You need to stretch the IT band to release. It can be a bit painful but will subside in a few minutes of stretching. It makes it a bit painful getting up in the morning but eases off as you get around.
Thank you, appreciate you taking the time to reply. x
so sorry to hear about Rex but glad to hear positive trends for you.
Bit overwhelmed here with 3 family deaths since 29th December hence my lack of input.
Also looks like I have a peptic ulcer....... things can only get better and spring is coming!
So glad that you're finally on the upswing. You will see your dog again; pets are family members. Cold comfort I know.
So sorry about Rex, that’s heartbreaking. I was hospitalised 3 times with cellulitis, so I can sympathise with that one…& I currently have trochanteric bursitis!! Sending hugs, S x
Thank you Pixix. Aren't we all walking disasters😂It nearly did for me when I was 23 and completely forgot about it until the recent spat. As for bursitis, what can I say!!!
I’m so sorry about your Doggo. I hope you continue to improve. X
thanks Bramble2000
Very pleased that the debilitating add-ons are being sorted. So sorry to hear about Rex. I think you have put your finger on things and that much of this is a result of the pressures of performing as an elite athlete on an existing individual mind/body/spirit matrix with all its strengths and weaknesses. Just as mine is down to the stresses of looking after an angry and suspicious (but previously wonderful) mother for seven years. When she passed at 99 last year I felt a physical lightening and was sure GCA was on its way out, until I reached 3mg just before Christmas and PMR reared its head. Anyway, devastating set-back at the time, but hopefully things have settled a bit and I am back on the path, but for longer than I hoped.
My takeaway from this was that more had to be done to heal and repair the years of mental anguish impacting on the physical.
Your story is much about competition and pushing yourself. My feeling is that this needs to be let go for now, and it's time for exploring the gentle somatic options for working with the body and mind (like for instance Hanna somatics) and also working with the energy field through meditation approaches and healing modalities. There are so many interesting avenues to explore in all of this. Apols if mentioned this before, sometimes I forget what I post.
So Sorry for your loss ....RIP Rex Blessing and good Juju to you
about time I updated this. I haven't been able to do my resistance riding on the turbo because of these issues. Today was my first in over 4 months. I have definitively lost substantial physical ability. I was previously able to ride at 60rpm at a fixed resistance for 20 mins. Today wa s 30 rpm for 10 mins. That is a significant drop of endurance and power. Both readings showed the same BP and heartrate after the exercise. I intend to keep doing the work twice a day at this effort until I feel it is ok to increase.
not quite as bad as at first. Tyre pressure was down so resistance harder. truer figure is 40rpm for 10 mins. Still not good but better. I will do this twice daily for a week and then up the time by 5 mins for another week. When the time is 20 mins I will then increase rpm to 50 then 60 when able. Easy stages.
Gently does it cycli. Good luck with it.👍
I.'ve been keeping a low profile as the situation just seems to roll on much the same. Made another trip south to sort issues with property. Very tiring and I needed a couple of days recovery when back. I'm down to 15mg still but hoping to drop to 13.5mg. Not flaring yet.
Update. I've not been on turbo recently as back and bursitis have been troubling. Just had blood test so hope inflammatory levels are ok. down to 13.5 and hoping to drop 12.5 and then to 12 and then 11 if results are ok. Back on turbo tomorrow so I should see progress. Infusion for osteoporosis july 24th so things are progressing however slowly. Onwards and upwards.
Another progress report if anyone still interested. I like to keep continuity of threads rather than start new ones. i am down to 11mg pred. now with leflunomide so positive. No flares this time. Still hampered by the back issue and osteoporosis. Cracked vertebrae an issue and the infusion of Zoledronate hopefully working to strengthen bone. the compressed spine and resultant curvature has lost me 3" height . Still can't stand and work for more than 30minutes. This makes doing anything requiring continuity difficult. Our work on the recovery programme has stalled for the moment so I will nudge this along and report. Other than this I am still hopeful for remission so fingers crossed, I wait, as do we all. Keep smiling
Thanks for update - but will be seen by only seen by those who have saved your post - and there aren’t many that do that…
Like thee and me ...
That's ok I guess DL and PMRpro. I seem to be in a sort of nomansland treading water. Hard to do on land. At least no flares as I reduce, for now . Not contributing much for now so hope I can get some muscle and strength back sometime soon.
You will -and it’s doubly difficult when you were so fit before… but as we say, keep plodding on and you’ll get there.
Thanks DL. what choice do I have really. At least things seem stable at present and maybe slightly improved. HeyHo. Keep on keeping on eh?
You will -and it’s doubly difficult when you were so fit before… but as we say, keep plodding on and you’ll get there.
Hi D2C. Not got permission to access your link. Doing ok. thanks. Down to 11mg. Yes Leflunomide seems to be helping so no need at present for TCZ but I'm on for it if I have problems with Lef. I'm on a cat3 climb at the farm so no riding for me yet. Turbo the only choice. If I get pred. below 5mg there's some poss. of rebuild muscle but Myopathy has wasted 60% of muscle. Got bursitis, neuropathy and osteoporosis with compressed spine and cracked vertebrae. Had infusion of Zoledronate for osteo. 3 yr. programme. Sister gave me a folding rollator with seat but don't need yet. Can manage 20-30mins standing and working. Still doing stuff but not much. getting by but a bit fed up and 3" shorter😂
Good to get reply. The myopathy and neuropathy are down to pred. Mine are severe. Thin skin and subsequent easy bruising likewise. Slower clotting down to blood thinners to prevent another double PE or DVT. my balance is shot at present so I am not risking cycling for the moment. Turbo it is for now sadly. I don't ever ride mass events mostly because the vast majority of the riders are undisciplined and have no understanding of how to ride with others let alone with consideration for other road users. Good luck with your riding plans and I would work towards 2025 if I were in your shoes. I'll be back on my bike when able have no fear. Probably more touring than challenging rides though.
Further update.
Blood test later in month and down to 10mg now. Neck issues towards end of day but otherwise getting by. Going to start turbo again and managing some chainsaw work for logs. Damaged shin so more money on dressings but coping. Back pain mostly on left hip top of pelvis/soft tissue. Going to buy inversion table with the aim of using gravity to straighten the back. should also help fluid build up in legs and ankles. Friends coming to stay on farm to do some cycling this weekend. Will be good to catch up but depressing not to be able to join in. At least I can show Mark how to sharpen his tools properly. Happy days. Going to chase up on my recovery project after weekend.
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