Good days and bad days

Posted by lanieg @lanieg, Dec 31, 2022

Hi everyone
I was diagnosed a month ago with PMR. Woke up one morning and had extreme pain in both upper arms, shoulders and neck. Also in my right leg. Have since been on 20 mg prednisone per day and 100 mg 3x a day gabapentin. Both have helped but I find that I can have a good day with little pain and the next day I can barely walk or lift my arms. I've started a food journal to see if that's a factor. Has anyone else experienced this when first diagnosed? Thanks for your input.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@whyohwhy

My apologies to lanieg@lanieg for jumping on her post and changing her subject, I have NEVER engaged in any support group much less on the internet.
Consequently, I'm bad at the protocol. I learn fast, however.
Thanks to John and Dadcue for feedback.
OK to answer some questions. Two ER test results. CRP 176.38. Sed rate 29.
Background: History of back issues. Like many others have DDD (degenerative disc disease)...L1-S1 a mess. I can live with that. In Sept 22, had a steroid injection at L3 which provided relief through Jan 23. During that time I began running again...up to 2miles/d. I had been running 5mpd every other day 2-3 yrs. prior. Felt good. But then back flared up again. Went back to orthopaed...long story ended up with RFA (ablation on L3,4,5) with only moderate success Brings the story to Sept of 23, when I reinvested in the orthopedic course. No surgery was outcome of all visits. So live with it. That I could.
Enter 12/3 ER visit. Long journey to get to PMR, eh?
Questions:
1. ER Dr. told wife that he thought I had PMR. I have nothing in writing.
2. ER Dr. administered dilauded for pain
3. ER Dr. told me to see my PCP in 2d.
4. Hell to get in to PCP given pain. Did within 2d. Got prednisone 20mg. Didn't do shit...got another 5mg.
5. Now 1 mo in and everyday is a new adventure...as lanieg said...some good, some bad.
That's my story.

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Sadly there are many conditions that mimic PMR which is one of the reasons diagnosis can be such a problem. Here's more on the topic:

--- Diseases that mimic polymyalgia rheumatica (PMR)
https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica#similar-diseases

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Thank you John.
Good to know cancern is on the list. Why not.
I'm satisfied I have PMR. My PCP provided written verification after exam and after the ER result.
So 2 questions and some observations:
1. Why didn't ER provide prednisone?
2. Why seeming lack of urgency by PCP to get prednisone into me. Waited 2d. after ER before relief.
Observations.
1. PMR is personal. For every person it varies. For some lots of pred to get relief for others 20mg.
2. Everybody's PMR is different. For some brain fogginess, for others body lack of fluidity until the PM, for others who knows.
3. Rheumatology science is trial and error. Clear that tapering prednisone can take years.
Sum total of my knowledge.

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@whyohwhy

Thank you John.
Good to know cancern is on the list. Why not.
I'm satisfied I have PMR. My PCP provided written verification after exam and after the ER result.
So 2 questions and some observations:
1. Why didn't ER provide prednisone?
2. Why seeming lack of urgency by PCP to get prednisone into me. Waited 2d. after ER before relief.
Observations.
1. PMR is personal. For every person it varies. For some lots of pred to get relief for others 20mg.
2. Everybody's PMR is different. For some brain fogginess, for others body lack of fluidity until the PM, for others who knows.
3. Rheumatology science is trial and error. Clear that tapering prednisone can take years.
Sum total of my knowledge.

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Just my guess, but not many doctors want to start a patient on long term prednisone.

In my case, it was assumed I was having a flare of inflammatory arthritis. I was diagnosed with reactive arthritis before PMR was diagnosed.

My rheumatologist restricted prednisone because “inflammatory arthritis isn’t treated with prednisone.”

Why is your spine messed up? My lumbar spine is also a disaster zone.

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You are fortunate to be diagnosed. My PCP and I are guessing that I have PMR until I can see a Rheumatologist in February.

I also have good and bad days and I'm sure it's diet and sleep related.

Try eliminating as much inflammatory foods and drinks as you can. I've added Turmeric with black pepper and green tea to a pretty clean diet. Don't eat any processed foods, alcohol, white flour, or sugar - the list goes on. Google anything you're thinking of eating.

Craving something sweet? Have some dates or red grapes. I've researched a lot- information is abundant on line.

My inflammation (and pain) has subsided - Prednisone helps too!

It's been 2 months since this malady struck. Looking forward to its departure!

Good luck and try to stay positive.

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@nancy53

You are fortunate to be diagnosed. My PCP and I are guessing that I have PMR until I can see a Rheumatologist in February.

I also have good and bad days and I'm sure it's diet and sleep related.

Try eliminating as much inflammatory foods and drinks as you can. I've added Turmeric with black pepper and green tea to a pretty clean diet. Don't eat any processed foods, alcohol, white flour, or sugar - the list goes on. Google anything you're thinking of eating.

Craving something sweet? Have some dates or red grapes. I've researched a lot- information is abundant on line.

My inflammation (and pain) has subsided - Prednisone helps too!

It's been 2 months since this malady struck. Looking forward to its departure!

Good luck and try to stay positive.

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Any sweet fruit like dates and grapes trigger my pmr pain

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@marid57

Any sweet fruit like dates and grapes trigger my pmr pain

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Oh no! I base my food decisions on research. I'm sorry these cause you to flare.

"Studies have found that the elements inside dates have strong antioxidant, anti-tumour, and anti-inflammatory properties." So far so good for me.

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@marid57

Any sweet fruit like dates and grapes trigger my pmr pain

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Same with grapes.

"Grapes contain different polyphenols and might prevent inflammation by reducing Nitric Oxide (NO) inactivation through antioxidative enzymes."

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@nancy53

Oh no! I base my food decisions on research. I'm sorry these cause you to flare.

"Studies have found that the elements inside dates have strong antioxidant, anti-tumour, and anti-inflammatory properties." So far so good for me.

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As well as being high in sugar/carbs, dates are very high in oxalates, not good for some of us. Turmeric and black pepper are also high in oxalates so I avoid them. Some things that are said to be anti-inflammatory are high oxalate which may be okay for some people but be bad for others, negatively affecting kidneys and joints.

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@megz

As well as being high in sugar/carbs, dates are very high in oxalates, not good for some of us. Turmeric and black pepper are also high in oxalates so I avoid them. Some things that are said to be anti-inflammatory are high oxalate which may be okay for some people but be bad for others, negatively affecting kidneys and joints.

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I can't wait to see the Rheumatogist.

I've been taking Turmeric with pepper on the advice of my PCP.

Everyone is different like you say, but I'd like more answers.

I'm eating one or two dates a day to curb my preference for cookies and ice cream. Somewhat better for me.

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@nancy53

I can't wait to see the Rheumatogist.

I've been taking Turmeric with pepper on the advice of my PCP.

Everyone is different like you say, but I'd like more answers.

I'm eating one or two dates a day to curb my preference for cookies and ice cream. Somewhat better for me.

Jump to this post

I eat strictly low carb, but like you, need something a bit sweet occasionally. That's when I have a bowl of diced canteloupe - high in potassium - with greek yoghurt. If a couple of dates is working for you, good. Your PCP won't know how other people may react to a particular food or medicine. Many people just follow the current "superfood" ideas without knowing what oxalates are, or how they combine with calcium to form calcium oxalates.

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