Thought I would post this, just in case it might assist someone else out there.
PMR since June 2019 and at one point managed to get off of pred to try another drug, although it was too hard on my stomach, so back on pred and now it's been 7 months and I'm at 8 mg and feel pretty good, my ESR is down to 4.
A couple of things really helped me:
1. At night I take 20 mg of CBD and 6.25 of THC and I sleep anywhere from 6 to 9 hours and get up feeling very well rested. I don't want any high from it, so if I am getting one, it's while I'm sound asleep and probably in the way of a dream
2. About a month ago started doing Qigong for beginners and although painful and difficult in the beginning I now find I can hold most poses the length of time the instructor does and when I am finsihed I feel energized.
Wishing everyone a Merry Christmas and let's hope 2020 has a cure in it
for all of us
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remission
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Thanks for sharing. Just started hemp oil to avoid more prednisone. Helping some. Praying after 3.5 years, PMR will just go away. I am encouraged by others who are on this struggle bus with me.
Thanks for the information. I’m just 2 months in and on 15 mg prednisone. I see my doc for my 2 month review and I hope to start tapering. Waiting on my blood test results. I can get CBD here but not THC I don’t think but I’ve been fortunate so far to be able to sleep. Did you try curcumin? I am planning to add that when I start tapering.
I also take curcumin, but not certain it is doing anything, of course one doesn't really know unless something is showing up in the blood work. I have noticed the calming effect of the cbd/thc combo and of course being able to sleep has been made a huge difference to coping.
Just had my first 121 session with a tai chi / qigong/ yoga instructor and it was tough! Good news is that he was impressed with my motivation and said I was actually more flexible than a lot of people he teaches that don’t have PMR but I am sooo stiff this morning. Have to decide whether to continue - but need a warm bath and some gentle stretches I think!
I would stay with it....I do Qigong at home and it was difficult at first but it kept getting better and I think from everyone else I've heard from on the forum that it is what we all should be doing, some form of yoga/Qigong or Tia Chi....gentle movements, but keeps the joints moving
That sounds interesting - can you recommend a brand of CBD as a recent programme on telly suggested many were useless? Alo re Tai Chi, I tried it but found the repetitive nature of the movements like 'the gun-slinger' made my shoulders worse so gave up.
I have tried CBD and THC and many combinations and dosages of the two and all I found is that it made me more tired, I finally stopped any Thc and strictly take the CBD at bedtime ,as it does create a relaxing feeling. I currently continue with my Qigong practices, sometimes 3 half hour sessions in a day. I follow what my physiotherapist has told me and that is, "do nothing that hurts, as it will cause more inflammation", and so I also adapt my Qigong to do only that which does not cause me pain.....I continue it because I firmly believe to conquer this disease it will take more than drugs & time, it will take lifestyle change and because it appears to be triggered by stress, I suspect finding ways to calm the mind, ie, Qigong, medidation, is going to become an important element to that....Hope that helps.
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