Do you notice more flare-up in the summer or in the sun?

May I know your symptoms please?

Wow I hav alread eliminated all sugar..dont eat much processes food. Same woke up one morning could not move. Like buss hit me.

@@kandacepatterson7965 There is much evidence to point to vegetable oils being the main problem. There is a host of diseases that were almost unknown before we began consuming them. They are hidden in many foods and even the cheese on cheap pizza's is not cheese it's doctored vegetable oil. Olive oil is good to consume but not good for cooking. If you can avoid steroids it will avoid all the side effects they have. A complete change of diet can't do you harm and there are huge benefits from it.

And the prednisone after you’re on it for a little while there’s no picnic either. It’s about the same as the pain. After seven major back surgeries and learning to live with that pain 24 seven now this bullshit to the pain, agenda and pain medicine does not touch this stuff 😡

Animal fat clogs arteries

@@LorySmith949 Doctors in the past have made some very wrong assumptions and demonised fat which has no foundation. 150 years ago diseases such as heart attacks, cancer, diabetes, AMD, etc were very rare and today you are highly likely to die from them. What has changed is our transition from animal fats to seed oils (vegetable oils) and the huge amounts of sugar that we eat. Humans have survived successfully for 3.5 million years consuming animal fats without a problem. Somebody who wanted to make a lot of money from processed foods told you they were bad and they had a healthy alternative. They lied.

I have Fibromyalgia and ME/ CFS which developed after a contracting a virus......your description of your symptoms and it’s on and off states of pain is very similar to Fibromyalgia and CFS..... Fibromyalgia people actually have a term for this on/off symptoms, we call it a “flare up”. One day you can feel pretty good, minimal pain in the muscles and joints.....but the next day, just 24 hrs later, I can be bedridden, pain level of 9’s and 10’s, complete exhaustion, gastrointestinal issues, nausea, vomiting and even trying to think is stressful....my brain has an “Out of Order” sign stamped on it.......and now the COVID” long haulers “ are expressing all the same symptoms....there is a definite correlation with some viral component and damage to the mitochondrial from the virus, and then begins your NEW Normal! You become a whole other person that now spends a great amount of your days stressing of when it will flare up again, will it be a bad one or medium one, will I have to cancel any plans I’ve made, how many days will this flare up last, etc, etc. The things that can help are yoga, mindfulness, meditation , a healthier diet with anti inflammatory foods, definitely some pain meds! and acquiring a new degree of patience.... I hope you are able to find somethings that work for you, and to make living with this new body manageable.

@@s.k.2017 You can add anti-inflammatory supplements like Turneric/ Curcumin w/ bioperine 1,500mg 3x a day, Malunggay/ Moringa capsule or tea, Wild/ Alaskan Omega 3 fatty acid high in DHA and EPA 2000-3000mg per day, Vit. D3, 5,000-10,000 iu per day, Wobenzym or ZenWise Digestive Enzymes w/ Probiotic and Prebiotics, Ang stay away from Dairy Products milk, cheese, High Carbs, Processed foods, refined foods, all sweets and Healthy lifestyle

Hi Graeme This sounds very similar to what I had and you’re right The pain is totally unmanageable without steroids. I was 47-year-old. I was totally healthy then I broke my ankle in a motorbike accident ,I then got a DVT from the lack of movement they then put me on Pradaxa (blood thinners) to get rid of the clot three weeks later I could not move or even get out of bed. We did every test we could find. I forgot to take the steroids one-day on holiday and I was punished severely with unbelievable pain the next day. Like you I didn’t like me on the steroids but they worked. I spent a lot of time with a homeopath adjusting what I was eating. got rid of any inflammatory foods like the nightshade family as well as a raft of other treatments and eventually after 3 years got back to almost normal. Now I am facing spinal fusion because my L5 s1 disk has completely disintegrated and this can be caused from inflammation and auto immune disease. Before I head in issues I was very active skiing surfing Diving and mountain biking. . I do wonder if it was triggered by my motorbike accident and damage to my discs that we didn’t pick up at the time because this can create major inflammation which can turn into autoimmune. Then exacerbated by the Pradaxa blood thinners causing The PMR. I will never really known as the specialist didn’t believe at 47 I should have PMR. Still life goes on but as you say I now have great respect for people living with pain. I certainly can recommend a good homeopath to get everything back in balance. Good luck with your journey it’s a long one.

I use cannabis to manage. Topicals work very well

My friends and I can say that because it’s 64 years old after seven major back surgeries essentially fusing most of the lumbar spine I woke up one day my hands would not close. They were swollen could not hold a cuppa coffee. My shoulders were frozen moving them was very very difficult And painful in the morning to see my Doctor Who said I don’t know try Motrin two days later I went to the ER at our biggest and best hospital. They did thousands of dollars of blood work to tell me it was PMR put me on a steroid 35 units a day next morning pain gone hands back to normal. Life was good! About three months into this program I began to sweat excessively hours and hours at a time mind you this is in the middle of winter and northern New England. You cannot get warm, no matter what you do, you can’t stop the sweating but chills so I adjusted the steroid dose from 25 to 50 and in the meantime, the arthritis specialist add and and methyl Trixx at 25 mg. It is now one year later and I still have days hours really that the pain comes back in the shoulders, but at 20% of what it used to be and now I want to get off some of these medications the doctor says it’s working why mess with it my theory is I’m taking two of these medicines for nothing possibly and especially the steroid. I don’t need any degeneration More than I already have and if you search anywhere you want to find out what PMR was like in the 30s and 40s or even in 2015 you can’t find anything. It’s like this popped up in the year 2019 or 2020 and it has me wondering why go from no cases to many many many cases in a few months time makes me wonder if there’s a connection😳😡😡😡?

I pray you'll have this awful condition gone soon.

@@agvision09 You are so kind, thank you.

Do you get weakness? Do you flare up more in the summer?

@@LorySmith949 it's more fatigue than weakness, by 2pm I'm wrecked and just getting out of a chair is a chore. I get some days that are worse than others but the summer doesn't make any difference.

@madmeister407 me too by 12 or 1 pm I'm drowsy and tired than lying down makes it worse but I always have chronic fatigue syndrome. I read online the sun's uv rays make it worse. Too much disease I'm done with this world

Why it took so much to get a diagnose?

My experience was very similar, I'm 70 and a bike rider. Severe loss of muscle mass is part of the condition (says my rheumatologist) and loss of muscle condition, steroids seem to halt the decay but dont seem to help regain muscle mass or condition. What I would like to know is ecpected outcome.

Same

Be careful with the steroids the longer you’re on it the weaker your muscles will get like to your own home will become difficult to climb and with me sickness like upset, stomach, flu, like symptoms all day and sweating like you have never sweat in your entire life for hours on end Changing your clothes completely socks, pants underwear, T-shirt, sweatshirt soaked through in 20 minutes and you can’t get warm and that usually last for three or four hours in the morning! Just keep an eye out when you start feeling these things it’s not your body it’s the damn steroid!!!!!

How are you doing now, after 3 years? I just came down with PMR and I'm resisting taking steroids. I read so many awful comments about it. I hope you are well and healthy. This condition is the worst! I'm 71, one day, a month ago, I was playing pickleball every day, have the time of my life the next day I woke up crippled.

Yes, it can hurt like the very devil.

I agree. The pain is excruciating but you try not to moan too much because people get fed up hearing about it. In my case, I've had these symptoms for around four months and my doctor sent me to a Physiotherapist who said I had Rotator cuff issues and have me a Cortisone injection. Since then, I'm unable to get an appointment at my doctor's surgery to get bloodk tests to see if I've got PMR, and I'm nearing the end of my tether...

@@patharris9530 Try to see a rheumatologist. He or she will do the proper blood tests. Try to get some prednisone from the rheumatologist. As low as 10mg will reduce the symptoms and that will help confirm the PMR diagnostics.

So true....just diagnosed..jesus so mich pain.

​@@patharris9530get to a rhumatologist!!!

Woah

That's why I don't want to live past 50. What for? Nothing but health problems

I started blackseed oil 1 teaspoon a day and everything has just about gone.

​@@mrod9277trusted source to buy this?

I fit the profile of pmr fairly closely.. An Endocrinologist suggested this as possibility but pointed out steroids were the treatment. The irony is my symptoms came on w a vengeance following intramuscular STEROID treatment and very strong anti-inflammatory, toradol. Subsequent to that I deteriorated rapidly including weight loss. My weight returned 1.5 years later, all other symptoms remain but there is sllow improvement. Anyway, agree this starts in the gut as feel mine became damaged. It's great if treatment helps some....but for others the side effects affecting metabolism and electrolyte balances are not insignificant nor getting to root issue.

One can have PMR and spinal arthritis togather. So your neck is another story. Weakness can be due to neck arthritis. But you may also have PMR altogather. Go to a rheumatologist . as a othopaedist or neurologist cant really diagnose you.

Thank you!

I have MCTD and having symptoms of PR or polymyositis. Can they be seronegative like my RA, lupus and Sjögren’s?

Same exact thing happened to me at work about 2 years ago. I am on the dosage programmed he explained in the video given to me by my rheumatologist. sometimes there are flare-ups but it seems to be working pretty good .I am at 3 mg a day now hopefully to be off soon.

Also adding I am male, Northern European ancestry, 63 yrs old, 6'4" tall and weigh 225 pounds down from 240 before the PMR. I do not feel any negative effects using prednisone, but it wants to push my glucoses way up, still can reach low 300's even taking extra insulin. Prednisone will spike my glucose very high, even if I read 100 in the AM, I know 10mg prednisone will add 150 or more, so I take 40 units of Novolin 70/30, If I do not take a huge dose of insulin, it will get to the upper 300's my glucose. So yeah, I want to taper off ASAP. Or maybe the Rheumatologist can try some other drug like Methotrexate to lower my use of prednisone. Eventually the insulin brings down my sugar.

Whats CRP? Doctor only did sedimentary test. It was 4

@@WeLetItHappen C-Reactive Protein, it is almost always high in PMR and cancer. It is a marker for inflammation in the body and is made in the liver.

Excedrin works for me. I have a mild case. The weakness and fatigue is debilitating. Any kidney problems from the inflammation?

Hope your treatment goes well

Me too. Hope you feel better soon :)

me too great video. good luck all x

Same. Thought it waas due to needing rotator cuff surgery. Diagnoses yesterday with pmr got a shot. Better today still stiff if I sit down. I have Sjogrens also.

Agree now treating with plaquanil...butit takes 6 weeks to kick in.

@@kandacepatterson7965 May I ask what shot is this you had? I have PMR, I'm in my 3erd month,

And kidney damage from the inflammation?

Have you trid to wean off?

I hope you are better! This medicine is awful! I got PMR a month ago and I got in the carnivora diet and is beginning to help me! 0 carb diet to get rid of the inflammation in the body.

Yes, you are right. As a general rule inflammatory pain improves with movement

I started blackseed oil- 1- teaspoon a day My stiffness, pain, and decreased my medications. Now, I feel so much better. No more stiffness, pain, my knee was swollen and painful. Now my knee is doing so much better. No stiffness, not swollen, and no pain. Inflammation is gone down so much. I am active and not in bed.

They say....yes. But and I don't feel that. I try short bursts of activities

It can be a bit confusing because it is both, pain while moving and pain when you don't move. The main feature is that pain is reduced with movement, because when you are resting (specially when sleeping) your body will stop producing some anti-inflammatory compounds, and once you wake up or move your body will start producing them again, which will reduce your inflammation and you will start feeling better, but moving and exercise will eventually start producing inflammation too, which will force you to rest, and the cycle will start over. So you are essentially between a rock and a hard place.

No it doesnnt

These side effects do not outweigh the detriment of the symptoms you would suffer without medication

With a healthy lifestyle and some calcium+vitamin D, the side effects are under control.

​@@elenaiabanji8821no maam you are wrong . Diet has nothing to do with it. I have a nutritionist friend who has it. Very fit eats healthy.

Steroids jack your blood sugar and blood pressure, not for me

Not sure I follow the question. Are you saying bc the treatment is only with steroids it is therefore not autoimmunity? I question the autoimmune classification too.

@@radar5464 Is caused by inflammation in the body and trauma. My son died last october 2023, the grief and sadness have been so great one day in Feb I woke up with PMR. I did have elevated CRP but not anymore . but the pain persist. I eat only meat and eggs and I eat once a day and I do water fast 2/3 days often ... I hear that fasting is very good for autoimmune disorders.

​@agvision09 what was your sedimentation rate?

@@LorySmith949 Sedimentation rate: 14 and C-Reactive Protein: 6 Last blood test last Friday, 5/31/24

@agvision09 14? That's all? Then your normal. It has to be over 40

I think I got it too around covid time. I think it's the sun that caused it. Artificial sun. Fo you flare up in the summer. I was ok until summer came

I have the same . I don’t want to take steroids because of the side effect warnings but without them I have no life.

Hi. I use to be in bed. Fibromyalgia, ostro/RA , was on strong meds. So much pain. Spend most of my time in bed. Now , I started blackseed oil 1 teaspoon a day. Now, I’m pain free, more active, my meds have been taken away. Slowly

@@mrod9277 can this reduce pains

Get RA factor test. It sounds like that might be the case. PMR is rare in someone so young and is more achey and inflexible than really painful.

Thennit moves to pelvic and wrists andhands its horrible you can not move thought I was having a stroke.

Wich one???

I would like to know too. Have had PMR for 3 years and a blood disorder which has haematologist puzzled.

hahaha

So can say cervical either way, so shush.