Thank you for your feedback. I would like others to report also. What I am trying to tease out is whether the non-active pain is related to the PMR, or some other source.
I only had/have inactive pain while in bed. Once I got out of bed, I was fine. At one time I thought I was misdiagnosed, but now I think the first rheumatologist was right-- I just have a very mild case. Maybe because of my anti-inflammatory diet and the fact that I also take omega-3 and turmeric supplements. Dunno. I was able to wean off of a low dose of prednisone after 1.5 years, but I experienced a slight flareup after I had COVID. Now I'm tapering off of 2 mg..
I happen to be a registerd dietitian and I've been taking turmeric and omega-3 supplements for many years, plus I eat a whole foods organic diet, high in anti-inflammatory foods. Maybe that's why I had such a mild case to begin with--I only hurt at night in bed. I take 1000 mg of turmeric twice a day and 300 mg DHA and 125 mg EPA omega-3 twice a day. The brand name is Testa from algae oil (where the fish get their omega-3's from).
My PMR was a sudden onset within a weeks time 2 years ago. While trying to figure out what it was, I tried Tumeric but didn’t help at all. I was already taking a glucosamine/MSM for osteo arthritis. The pain (hips and shoulders) was only when I was moving, getting out of bed and car, getting up and down off the toilet, trying to bend over(I couldn’t touch the floor anymore). The only time it was passive was when it got to my wrists. That was fairly consistent until I got on the prednisone a couple of months later. I started on 15 with immediate results. I have been on 2 mg for 4 months now. I have had increased stiffness and pain so haven’t been able to go down further yet. I take ES Tylenol for breakthrough pain.
I agree that it is a radical change from your previous abilities. I had been having side effects from my glaucoma meds bothering my legs for some time so that was fuzzy. But suddenly, I couldn't pick up my western saddle (35lbs) because my arms hurt. I knew something was wrong.
There is a question I would ask you or anyone else if the pain that was experienced was while the muscles were being used or while they were at rest?
My pain was constant, from the neck down through my whole body, to the feet. I thought of it as my astronaut suit of pain and stiffness. Later, when I had GCA, it felt like my head and neck were caught in vise grip, and I could not turn my head. I told my rheumatologist that I wasn't able to push a faucet down to get water in a public washroom. He asked if it was pain or weakness. I didn't know the answer then, but now I think the two went hand in hand. For me, the pain begat weakness.
Tumeric does not seem to help my PMR pain, instead I am going to try the recommended dilution of borax, I found the information on David Niven Miller’s health page - growyouthful.com David is in Australia, apparently he has been taking it daily for 10yrs, borax is reported to help arthritis and rheumatic pain but must be diluted properly.
I agree that it is a radical change from your previous abilities. I had been having side effects from my glaucoma meds bothering my legs for some time so that was fuzzy. But suddenly, I couldn't pick up my western saddle (35lbs) because my arms hurt. I knew something was wrong.
There is a question I would ask you or anyone else if the pain that was experienced was while the muscles were being used or while they were at rest?
For me, it’s both at rest and when I start to use something like my arm. Both forearms and upper arms have pain while at rest and slightly more pain when engaging in an action (reaching, moving a pillow). But then I’m able to continue the task (gardening, emptying dishwasher) without any additional pain. I’m learning to just go ahead past that initial pain and do what I need to for as long as I can. It requires more rest later but at the time, I can do much of the task. Also, every day is different.
PubMed had a small studied that was done on people who were taking steroids and had a flare up. The only difference in their bloodwork was a high level of IL6 in the blood of people who flared. (A cytokine) That is why I take MSM which is a GRAS (generally regarded as safe) which is a suppliment for arteritis. It has been shown to down-regulate IL6. Worth a try. I've used it for years for lameness in horses and dogs with good results.
For me, it’s both at rest and when I start to use something like my arm. Both forearms and upper arms have pain while at rest and slightly more pain when engaging in an action (reaching, moving a pillow). But then I’m able to continue the task (gardening, emptying dishwasher) without any additional pain. I’m learning to just go ahead past that initial pain and do what I need to for as long as I can. It requires more rest later but at the time, I can do much of the task. Also, every day is different.
I see a trend that PMR does cause pain both at rest and while we are using our muscles. I wasn't sure since when I was put on Low Dose Naltrexone the at rest pain stopped abruptly but not the using muscles pain. So I wondered if it was something else. Now I wonder what LDN acted on to remove it. If I stop the LDN for at least 3 weeks, it comes back and I hurt all over and can't rest. No bueno! So I keep up the script for LDN.
My PMR started 3 months ago . I immediately started eating 0 carb. I eat meat and eggs and butter. 2 months ago I decided to have a cheat day and had 3 slices of sourdough bread. Next day they pain was unbelievable!! It lasted 2 days and then went back to the pain I have now....
I'm hoping to beat this by eating this anti-inflammatory diet. My inflammation level is 11... a little more and will be a normal level. But I hear sometimes the pain remains until it decides to go....
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I only had/have inactive pain while in bed. Once I got out of bed, I was fine. At one time I thought I was misdiagnosed, but now I think the first rheumatologist was right-- I just have a very mild case. Maybe because of my anti-inflammatory diet and the fact that I also take omega-3 and turmeric supplements. Dunno. I was able to wean off of a low dose of prednisone after 1.5 years, but I experienced a slight flareup after I had COVID. Now I'm tapering off of 2 mg..
I happen to be a registerd dietitian and I've been taking turmeric and omega-3 supplements for many years, plus I eat a whole foods organic diet, high in anti-inflammatory foods. Maybe that's why I had such a mild case to begin with--I only hurt at night in bed. I take 1000 mg of turmeric twice a day and 300 mg DHA and 125 mg EPA omega-3 twice a day. The brand name is Testa from algae oil (where the fish get their omega-3's from).
My PMR was a sudden onset within a weeks time 2 years ago. While trying to figure out what it was, I tried Tumeric but didn’t help at all. I was already taking a glucosamine/MSM for osteo arthritis. The pain (hips and shoulders) was only when I was moving, getting out of bed and car, getting up and down off the toilet, trying to bend over(I couldn’t touch the floor anymore). The only time it was passive was when it got to my wrists. That was fairly consistent until I got on the prednisone a couple of months later. I started on 15 with immediate results. I have been on 2 mg for 4 months now. I have had increased stiffness and pain so haven’t been able to go down further yet. I take ES Tylenol for breakthrough pain.
My pain was constant, from the neck down through my whole body, to the feet. I thought of it as my astronaut suit of pain and stiffness. Later, when I had GCA, it felt like my head and neck were caught in vise grip, and I could not turn my head. I told my rheumatologist that I wasn't able to push a faucet down to get water in a public washroom. He asked if it was pain or weakness. I didn't know the answer then, but now I think the two went hand in hand. For me, the pain begat weakness.
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Hug
3 ReactionsTumeric does not seem to help my PMR pain, instead I am going to try the recommended dilution of borax, I found the information on David Niven Miller’s health page - growyouthful.com David is in Australia, apparently he has been taking it daily for 10yrs, borax is reported to help arthritis and rheumatic pain but must be diluted properly.
If only we knew what causes the flare ups.....
For me, it’s both at rest and when I start to use something like my arm. Both forearms and upper arms have pain while at rest and slightly more pain when engaging in an action (reaching, moving a pillow). But then I’m able to continue the task (gardening, emptying dishwasher) without any additional pain. I’m learning to just go ahead past that initial pain and do what I need to for as long as I can. It requires more rest later but at the time, I can do much of the task. Also, every day is different.
-
Like -
Helpful -
Hug
2 ReactionsPubMed had a small studied that was done on people who were taking steroids and had a flare up. The only difference in their bloodwork was a high level of IL6 in the blood of people who flared. (A cytokine) That is why I take MSM which is a GRAS (generally regarded as safe) which is a suppliment for arteritis. It has been shown to down-regulate IL6. Worth a try. I've used it for years for lameness in horses and dogs with good results.
I see a trend that PMR does cause pain both at rest and while we are using our muscles. I wasn't sure since when I was put on Low Dose Naltrexone the at rest pain stopped abruptly but not the using muscles pain. So I wondered if it was something else. Now I wonder what LDN acted on to remove it. If I stop the LDN for at least 3 weeks, it comes back and I hurt all over and can't rest. No bueno! So I keep up the script for LDN.
My PMR started 3 months ago . I immediately started eating 0 carb. I eat meat and eggs and butter. 2 months ago I decided to have a cheat day and had 3 slices of sourdough bread. Next day they pain was unbelievable!! It lasted 2 days and then went back to the pain I have now....
I'm hoping to beat this by eating this anti-inflammatory diet. My inflammation level is 11... a little more and will be a normal level. But I hear sometimes the pain remains until it decides to go....