curious if any of you have tried using the tincture to help treat symptoms and help with inflammation and autoimmune? I diagnosed 7/23. Several flares back to slow reduction from 10 mg. I exercise 4-5 times a week at my crossfit gym so know I push my body but so far so good. I have tailored my workouts via a good coach. Am finding a balance. Any words about the tincture would be welcomed.
You will see related posts re CBD now you a have asked, but general consensus of opinion is that it may help with the add ons of PMR - but not with the illness itself - and you should always check it had no adverse affect with any prescribed medication -
healthunlocked.com/pmrgcauk...
Also see this, it’s a British site but info is still relevant-
No-one we know of has found it does much for the PMR itself although some find it helped with add-ons like sleep. But at a price.
"Several flares back to slow reduction from 10 mg. I exercise 4-5 times a week at my crossfit gym so know I push my body but so far so good"
So far so good you say - but I wouldn't be surprised if pushing your body was actually contributing to those flares. I doubt the coach has any idea about autoimmune disease affected muscles.
Regards your tailored workouts, what are the considerations involved when they make the plan? A PMR/Pred body is a different beast to other ‘normal’ conditioning approaches. For example, sustained, repetitive movements under strain tend not to be appreciated,
I workout in a zone 2 and do personalized programming. Example 800 meter bike 20 goblet squats 30 dumbbell deadlifts 30 lat pull downs. All of these are crossfit movements but with less weight. I have no extra soreness when doing workouts like this.Honestly to not workout and get good movement would be so mentally depressing I would not have any kind of life. No walking does not check that box. For the person who said my coach probably has no idea about PMR and autoimmune … my coach is my daughter and she is on this journey with me. We work together to find a way to keep me moving and mentally stimulated while PMR is active in my life. The flare ups I had were directly correlated with extreme life stress. I understand what all are saying about exercise and PMR. I am just taking a different approach. Might be wrong but it might be right. For me mindset is critical and setting intentions for each day has given me direction in a world where the medical doctors are not much help. Onward and upward… heading to the gym.
cycli took much the same attitude initially despite our warnings, I think he may have revised his opinion over the years.
You and your daughter may think you know all about PMR and exercise (and whilst many of would agree exercise and mental wellbeing is very important) those of us that have been on this forum for a long time know you have to learn to manage your illness and it’s vagaries.
Not saying you are wrong in your approach, just suggesting you moderate things and make sure you don’t crash and burn -we have seen it before. That’s all -but as we also know, everyone is different.
honestly my initial writing was about CBD/CBG not about exercise. I appreciate the info on CBD. In defense of working out I HAVE modified and learned since original diagnosis. My experience has been that even when feeling poorly if I get out and move I always feel better. I understand this may not work for all and that I am fortunate it does for me. I have written workouts I do and accessory work on alternating days to maintain intrinsic muscle strength. Enough about working out. To each his own. I will say my Dexa Scans are perfect and the Drs attribute that to physical conditioning and weight training over the years. I guess you pick your battles with PMR. For today I feel strong and able to move forward. Happy New Year to all
I'm glad you feel strong. Strength is a very subjective word. We are all different and I couldn't keep going. High doses of pred for a long period damaged me. No matter who you are pred. breaks down muscle. It's just what it does. PMR restricts the muscle ability to absorb oxygen. Pred. also seems to inhibit muscles using the protein we eat. Given this, exercise will stress the body by taxing muscles which are struggling to work through these impediments. Lower levels of body stress might be ok. but at the level I would like to operate simply impossible. After more than 3 years I'm hoping mine are on their way out so beginning light exercise on the turbo.
I too found the level I wanted to workout was not sustainable. So a lot of trial and error. Thanks for your input.
Never been to a gym in my life so not sure what a work out is. My "workouts " were 100+ miles cycling over mountains with10-12000ft of elevation daily for several days in a row. Training for these trips took 6 months with two such rides a week.
Holy cow. That is intense. Mine is nothing like that but kudos to you. I can imagine having to hang the bike up has been difficult physically and emotionally. I was an avid crossfitter so barbells pull-ups pushups. We call it beast mode. I am now in more of a just trying to maintain the strength I have which is tough. I have had about 4% muscle loss since onset. I have done many a “deep dive” regarding the disease and trying to keep my head above water. It is not easy but I try to pay attention to what my body is telling me. There is no road map here right? For today all is well and all we really have is today. So onward with PMR and trying to find a balance with physical and mental stability. I appreciate your words and your strength.
"having to hang the bike up has been difficult physically and emotionally!" It's almost impossible to explain. Something that defined me was taken away and can't ever be regained. Fortunately it isn't all that defines me but it hurts more than I can say.
Boy I get that. Good luck to you and happy new year
Not many people really understand. It's not really about cycling fast(although long descents for miles at 50+mph are exhilarating. It's the physical endurance to cycle hundreds of miles day after day and be able to enjoy it with others of like ability. Memories and camaraderie are good outcomes but can't replace the actual cycling.
Well I get it. Crossfit is 321 Go and you give it all you have on any given day. We workout as a group…and when done look at each other and be like holy cow that sucked. See ya tomorrow and do it again. So I get the loss of that connection with community. That shared exhilaration. Probably the being outdoors was nice. I have totally modified what I do but still get to our gym 4-5 times a week. I think I must be lucky. I have never had PMR symptoms in my hips so work lower body… with common sense. It has been so important for me to try to reach out and still participate in at least a part of the community. Sometimes I live with a sense of loss but really don’t want to spend whatever years I have left in a grief mode. So I find what works for me. My hope is you can at least get outside and move a bit.
Thank you. Cycling is about legs, core, lungs and heart. I have lost about 60% of glutes and quads. The combination of PMR and GCA made it impossible to exercise, My pred. dose was way higher than yours and lasted longer, however I feel improvement. I can cycle short distances but all rides finish on a category 3 climb up to our farm. One of the reasons I chose to buy it. We are surrounded by 4 of the toughest climbs in England so perfect training but precludes going anywhere much in my current state. I'm now work in progress starting back at kindergarten level. Guess we all like a challenge.
You will find that we do veer off the main subject at times - but you did mention both in your question… and it’s much like a f2f conversation- it’s organic! 😊
Cbd oil
CBD OIL
CBD Oil - My Experience
Prednisalone and CBD oil combining them yes or no 
CBD oil
