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Diet and PMR - Words of Encouragement

Posted , 24 users are following.

diane67131
diane67131

 I just wanted to share a recent experience of mine in the hopes that it will be helpful to someone out there.   MIne is the typical PMR tale of woe - started at 15mg of Prednisone, went down and up a few times, got discouraged, suffered, cried.  Last winter I got down to 2mg and could barely walk so I went back up to 4 - cried again.   At that point I came out of denial and started to pay closer attention to my diet and was able to wean down to 2mgs.  It wasn't perfect, still had stiffness and general soreness but put up with it because I felt better later in the day.   Last month I went to visit my son who lives in Costa Rica.  Where he lives is a health retreat off the beaten track.   Because I didn't have a car, I couldn't get into town where the tiki bars and french fries were so I had no choice but to eat at the center where I had 100% organic food every day for two weeks - not one gram of sugar, zero wheat products, zero alcohol (well, okay, a beer in town one afternoon), zero coffee and zero dairy.  I also was forced to drink a jungle juice concoction that my son made me every morning containing organic tumeric extract.   By the end of the two weeks I had no symptoms at all - no stiffness, no aches anywhere, not even in the morning.  I felt amazing.   Since I've been home I've continued to be vigilant about staying with a healthy, organic diet and have been able to drop down to 1mg.   I've had three rheumatologists and not one has said a word about inflammatory foods, which is idiotic because there is absolutely a correlation!  So I'm just throwing this out there as hopefully a ray of light to anyone who is suffering and hasn't discovered yet the connection between what we eat and how it affects our bodies and aggravates this dreaded condition that we're dealing with.  It's been frustrating to feel that PMR has control of my life, but I'm pretty convinced now that I'm back in control.  As Martha Stewart would say, "And that's a GOOD thing!"

3 likes, 48 replies

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  • noninoni
    noninoni diane67131

    Posted

    I read in the NY Times two years ago that the

    "F.D.A. finds 12% of Spice Imports Contaminated", and 7% are contaminated with salmonella.  This is another reason to fry your spices!! When I read this, I took raw black pepper off my table.  Black pepper tastes better fried anyway.  

        I read elsewhere about a case of the black pepper in salami causing an outbreak.

      

  • LayneTX
    LayneTX diane67131

    Posted

    Speaking of diet.

    Yum! I just made some almond flour pancakes! (Don't know if they are called something different in UK?) Did put a little organic maple syrup on them. I never knew of this almond flour.

     

  • artfingers
    artfingers diane67131

    Posted

    Gosh, send me to Costa Rica and away from my hubby and son who eat horribly no matter how hard I try!  That is wonderful and I shall have to go back to being more strict.  Bread is my downfall (as it is for Oprah Winfrey too, hah!).  So very encouraging.
    • diane67131
      diane67131 artfingers

      Posted

      Being single does have its advantages  (Valentine's Day aside.)  I don't have to cook or shop for anyone else.  And bread, yes, is so hard to give up.  I'm going to a pizza party today, homemade right out of the pizza oven in the back yard.  I'll be eating salad.  Bummr!  

       

  • sharon21683
    sharon21683 diane67131

    Posted

    I have had PMR since April 2014, and have tapered down to alternating 3 mg and 4 mg of prednesone. The most important thing I have found is to keep active and eat anti inflammatory foods. Also besides turmeric, cinnamon, cayenne pepper, and ginger are anti inflammatory spices. I take them every day along with foods such as blueberries, broccoli, pineapple, mushrooms, nuts, chia seeds, coconut oil, organic eggs, and wild caught fish especially salmon. All anti inflammatory.. A hot drink of turmeric, ginger, pepper and coconut milk every night helps with inflammation and sleep.

    Hope this helps you all.

    • jan21306
      jan21306 sharon21683

      Posted

      Could you tell me the quantities of turmeric, ginger, pepper and coconut milk you use for your night time drink, and also exactly how you make it.  It sounds delicious, I would love to try it.   I wake up in the early morning hours with my stomach burning and my heart palpitating.  I am on pred for PMR, but also have gastritis, and I think it would help with both problems. I need to try anything as I am getting desperate.  Thank you
    • diana21296
      diana21296 sharon21683

      Posted

      All the anti inflammatory spices in the diet along with lots of oily fish, salmon and sardines etc are good for PMR. Totally agree with you as diet is so important.
    • LayneTX
      LayneTX diana21296

      Posted

      Sharon, how are your pains with PMR? 

      I'm so impressed and envious you can eat that diet daily.

      I'm unable to eat fruits and since Pred gave me acid reflux I must avoid so many yummy things now, like tomatoes, spices, fruit (which I can not eat anyway due to being hypoglyceimic ).

      I'm about to give up on antiinflammatory dieting! 

      It hasn't helped my pains. I'm frustrated with that.

      only help I'm finding is Bowen and mental work like meditation, being present, not letting pain be me so to speak.

      6 mg Pred and holding + DMARDS.

       

    • sharon21683
      sharon21683 jan21306

      Posted

      Hi Jan, sorry it took so long to answer, things have been busy! Here is the recipe......

      Golden Milk--

      2 cups coconut or almond milk

      1 tsp. Turmeric

      1 tsp. Cinnamon

      1/2 tsp. Ginger

      Pinch of black pepper

      Honey to taste--1 to 2 Tbs.

      Heat the milk to almost boiling then add ingredients and stir until dissolved. I add the honey now. Also you can measure everything ahead, mix and keep it in a sealed glass jar and just scoop out 2 1/2 tsp. When you feel like a cup.

      Hope you like it!

    • jan21306
      jan21306 sharon21683

      Posted

      Sharon, thank you so much.  It sounds rather good. I shall look forward to trying it.   I already use almond milk which I think is delicious !    Good luck with your reduction plan !
    • sharon21683
      sharon21683 LayneTX

      Posted

      Hi Layne,

      So far I have been doing good on the alternating 3mg and 4 mg, ( no pain.. A little stillness when I sit too long) so I am caustically optimistic. I just went to this level on February 9 th and will stay here for a month before going to 3 mg. In April it will be a full year since my diagnosis. I should mention that if possible try to do some yoga as well as meditation... Here they have gentle yoga classes that are wonderful.

      Best wishes...

  • nick67069
    nick67069 diane67131

    Posted

    I don't quite understand why  people give up carbs, or coffee or even alcohol? I live in Japan and rice is a staple food here. Everyone eats rice, a lot of it every day, just like in Europe they eat bread.  And they live longest in the world. I think balanced diet is what everyone needs. Fish, chicken and pork are common, beef not so much. All meat is used to flavor the food, not as a main ingredients. Every meal my wife cooks starts with fresh, natural and organic ingredients. We don't use processed food .  Someone said that one should not eat anything that great-great grandma would not recognize as food.

    Red wine for example has lots of antioxidants, opens up your blood vasceles and relaxes you. How can one glass of red with dinner be bad for you? Every now and then coffee gets bad rep, and then fashion changes and coffee is touted as a good thing.

    Basically I believe in moderation. Eliminating carbs or any other group of food entirely  to me is extreme and most likely harmful.

    • diana21296
      diana21296 nick67069

      Posted

      But everyone doesn't suffer from PMR and we need to do all we can to help ourselves.  If your diet suits you, that is good.  It is recommended to cut out bread when on Pred and it helps to keep the weight down which in turn cuts out other problems with diabetes later on.
    • Oregonjohn-UK
      Oregonjohn-UK nick67069

      Posted

       I tend to agree with you Nick and I live in the UK!  I have never in my life been even overweight, and during the high/medium doses of Mr Fred I did gain a few pounds (BMI=25) - mainly due to the lack of exercise and snacking.  I'm now at 3.5 mg, from 30 mg 19 months ago, and in the past few months have managed to drop my weight down to what I was pre PMR (BMI = 23).  I don't intend relentlessly getting to zero until I 'know' what my body is telling me.  It's not a relentless pursuit for me - I have learnt to accept Mr Fred as a friend (or better still an acquaintance!) that you accept because they are 'good' for you during this period of time but have to keep an eye on.

      I eat almost anything and everything (generally called a balanced diet!), love coffee especially strong black espresso,  smileand enjoy a medium glass of red wine at most evening meals.  Generally what calories you put in and you don't expend will add weight!!

    • JanSP
      JanSP Oregonjohn-UK

      Posted

      I can only let you know what happens to me with my GCA but the weight that goes on with the high pred is also a lot of fluid.
    • Oregonjohn-UK
      Oregonjohn-UK JanSP

      Posted

      Jan I did drink lots of water at the start which may have added some weight but there are no calories in water!  I did have to 'set my mind' to exercise which was difficuilt but once the pain of the symptoms were 'controlled' by Mr Fred it was a matter of keeping going to get my muscles somewhat slowly back up to near where they were pre PMR.  The brain was saying OK I can do it but the body was not quite so willing!!
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