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Friend's attitude hurts a little

Posted , 19 users are following.

DebbieHurts
DebbieHurts

Hi all.  I have a dear friend who is 77, and some years she had PMR in the worst way.  The dr (who is also mine) said she had the highest SED rate he'd ever seen.  She went on Pred. and gradually came down to 5 mg.  She also started eating non inflammatory diet and gluten free diet.  Well, I'm 100 pounds heavier than she is, and I eat fairly healthily (but can hardly exercise), and the PMR won't go down even on 19 mg, which I've tried to get used to this past month with the "dead slow" method you have.  I'm still in pain in my arms and shoulder too too much.

Anyway she called the other day and gave me a lecture on giving up milk, bread, etc. and told me "you won't get well until you try."  Is it really that successful - the diet - or is she just lucky?  

Besides PMR I have fibromyalgia, major depression, and arthritis.  

5 likes, 94 replies

94 Replies

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  • Nefret
    Nefret DebbieHurts

    Posted

    As far as I'm concerned, it's all hokum!  I have tried them all and found no benefit in any of them.

    As Oregonjohn says, we are all different and it does beg the question, what was her diet like before?

  • audrey80537
    audrey80537 DebbieHurts

    Posted

    It sounds as if your friend is concerned for you so give her a hug and say, thank you.  True friends are hard to come by.

    You have a great deal going on in the pain department and how you try to manage it is up to you.  Not knowing your situation perhaps losing the extra pounds may be a great idea but not possible for you at

    this time. It's entirely up to you and your decision to make.

    i wish you better days.

    Audrey

  • ingo
    ingo DebbieHurts

    Posted

    Debbie,  I was diagnosed with PMR in April.  Had symptoms since Dec. 2014.  Started on 20mg pred. April 1 and just started tapering to 17.5mg this past week.  Also started anti-inflammatory diet in April as well.  Have been pain free and exercising regularly with good energy during the day.  Even sleeping better.  Don't know how much I can attribute to diet, but it can't hurt to try.  As everyone says, we are all different and experience a different journey with PMR.  I was always in good shape before PMR, so that may also be on my side.  Good luck.
  • constance.de
    constance.de DebbieHurts

    Posted

    Quite frankly I would say you ARE trying.  Fibromyalgia and arthritis are bad enough.  However, the depression seems to be the thing that's pulling you down.  Are you taking any antidepressants?  Depression is very bad as far as PMR is concerned.

    Diet!   Loads of ideas on here.  Everyone wants you to give up all the things you like!?!?!!  Just try and find something that you can cope with.  It's your body!

    Commiserating with you.  Constance 💐

  • erika59785
    erika59785 DebbieHurts

    Posted

    As far as I am concerned, she is just lucky.  Your friend sounds like my sister who told me that I eat too much and the wrong foods, and this is why I am hurting.

    I don't know about caring......it is an opinion people have and they want to be right.

    I have been eating healthy, but because of Prednisone I had been gaining weight in the "wrong" places.....hamster face, a bit of a double chin....a ring around the middle I never had.  I have been reducing from 20 in March to 13 1/2, and it is getting better.  I have actually lost 8 pounds in 4 months.

    This is my story.....I feel for you, because it hurts to have to listen to opinions which are nor right for everybody.  We are all different.

    All the best to you, and try not to take it to heart.

     

    • rapha
      rapha erika59785

      Posted

      Hi Erika, I started on 40mg pred for gca/pmr and now am on 17.5mg and have gained a stone in 7 months.  Since reducing so far I have not lost an ounce!  I always ate healthily but now and then have a choccie treat.  Did you diet to lose your 8lbs in 4 months or did it just come off because of the reduction of pred?  Thanksx
    • snapperblue
      snapperblue erika59785

      Posted

      Hi, Erika- Thanks for your description of your new "fat distribution pattern."  I expected the chipmunk cheeks, but not that the fat would slide down under my chin and along the front of my throat! As a lifelong pear-shaped person, it came as a surprise to suddenly find my stomach preceding the rest of me into rooms.  I have been thinking, “Wait- is this the prednisone?”  “Ring around the middle” must be the technical term.
    • erika59785
      erika59785 rapha

      Posted

      Hi Rapha, I had to cut down on anything "fatty" (butter, carbs, sweet things) because I tested pre-diabetic in March, also my cholosterol had bad numbers, and I did not want to take medication for it.  I don't think the reduction of Prednisone did this ---- just lifestyle changes.
  • janet08828
    janet08828 DebbieHurts

    Posted

    Hi Debbie

    I am half heartedly on the low carb high fat "diet" - I have cut out all white bread, pasta, potatoes and rice - I eat lots of eggs and meat, fish etc. leafy veg. full fat yoghurts, cheeses and butter. It is ok - the thing I miss the most is my slice of toast in a morning!! Doesn't take much to keep me happy!! Last of the big spenders!

    My weight has sort of stabilised, I can't lose any after the initial loss of 4 kilo - but I am at least not putting any more on.

    I had a depression in the beginning of my GCA journey, was on antidepressants for the first year and found them a great help. It is really so awful to be so dark inside - everything negative and sad or desperate, crying at the drop of a hat. The pills helped me enormously, I know some folk have a hard time weaning themselves off them again, I was lucky and had no problems.

    I really feel for you, are you taking anything for your depression?  I suppose if you tried your friends diet for a week then decided for yourself whether it is for you or not then she can't say you didn't try! - I am sure your friend means well but maybe she needs to hear you a bit more. 

    Big hug - (so don't cry!!)

    Janet

    • MrsO-UK_Surrey
      MrsO-UK_Surrey janet08828

      Posted

      Debbie, I decided to research anti-inflammatory foods following eventual diagnosis really as a way of trying to fight back and regain some control over my life after almost ceasing to exist during the previous undiagnosed year.  However, although I believe that we have to help ourselves to some extent, I didn't believe in trying to force my diet on anyone else, simply being happy to describe it to other PMR/GCA sufferers who expressed an interest or asked the question.

      Although your friend is probably feeling that she would like to help you, I think she is wide of the mark with her statement "you won't get well until you try".  What suits one may not suit another - after all, just because one person on Pred is predisposed to bone thinning or diabetes, it doesn't mean to say that others are.  Certainly, I never gave up milk (excellent for our bones) or bread (just reduced the amount and stuck to unrefined), and why go gluten-free unless you are found to be gluten intolerant?

      I did particularly find that if I veered off my usual 3xweekly portions of oily fish for a week or two, I would notice returning symptoms (stiffness/pain) which always eased when I included it again.  In no way did my PMR and GCA go into remission because of my diet - that will only happen when it's burnt itself out and not before - but from my experience I firmly believe it eased my discomfort along the way.

      So, yes, your friend is "lucky" that her PMR has gone into remission, but that had nothing to do with her diet.  I'm in touch with two other people who have PMR and are both on gluten-free diets - one has had PMR for 10 years and the other for three!

      As Constance has said above, with all your health problems, it is probably the depression that is pulling you down the most, so do talk to your GP who can give you some medication to help you feel better.  Also, do try and have a walk each day, even if you can only manage 10 minutes at first as the exercise and fresh air will release those feel-good endorphins and help you feel much better.  At the same time, stick with the very slow taperig regime you have started - a month may not yet be quite long enough for you to feel the benefit.  I hope better days are nearer than you think.

  • Flutterbie57
    Flutterbie57 DebbieHurts

    Posted

    Hi Debbi, I have the same as you, the 2 myalgias, arthritis, one other auto immune problem and the depression. Get on top of the depression 1st, then it is much easier to cope with the others. Of course, with Antidepressants comes weight which is harder to shift than Ayers Rock.confused (just be aware and take care)

    I am considering the diet your friend suggests, but I have been told by some successful people that it has to be long term to make any real body changes. I have tried changes for a week which made no difference. But one incredibly passionate man(about the diet) said that it has to be for 3 months minimum to have any benefit. I now just need a drug for willpower !  

  • snapperblue
    snapperblue DebbieHurts

    Posted

    Your friend may well care, but her suggestion that your pain is your fault wins today’s Award for “Total Lack of Tact.”  Perhaps Honorable Mentions in the categories “Smug” and “Condescending!” 

    That is how I react when I am on the receiving end of such comments… but I am absolutely sure I have said similar things to others without a thought that they’d find my advice insulting! 

    We all make mistakes and state things badly.  I suspect she is trying to help and may be frustrated to see you having such a rough time. 

    The fact that you are not following her suggestions does not mean you are not trying.  I used to eat a lot of carbs, sugar, and milk.  Since I cut back on them, I really have felt better.  I have not given them up, just reduced.  Only YOU can judge whether this would work for you- you know what you eat now and whether these foods exacerbate depression, low energy, or pain.  You could try being aware, just observing how you feel after eating high or low amounts of these foods.

    As to your problem reducing the prednisone, how long have you been on 20 mg? Despite doctors’ belief that 15 mg is the golden number, it seems that some people need more at first.   I had classic symptoms, but needed over 20 mg for over 3 months (25 mg when I was traveling).  Then, for unknown reasons, I was able to reduce quite easily and quickly to 15 mg, then to 10 mg, and had no pain at all.  We really are all different!   Too bad doctors expect us to react the way the books say.

    Pain is the pits!  Depression is the pits!  Add a sanctimonious friend scolding you for not getting better (however little she intended that tone, that may be how it feels to you) and you have hit the trifecta!   You need help on pain and depression- and better communication with your friend.  (I am tempted to suggest that, if she keeps harping on this, you lie and tell her you are following her advice- just don’t have lunch with her!)

    • rapha
      rapha snapperblue

      Posted

      Hi snapperblue, how long were you on 15mg and 10mg before you reduced and how long do you intend to stay on 10mg before you reduce further....just wondering?
    • snapperblue
      snapperblue rapha

      Posted

      I reduced very quickly- about 3 weeks to go from 20 mg to 15 mg, and 2 weeks to go to 10 mg.  I have no idea why this worked out OK.  I decided to stay on 10 for a month, but (self-inflicted wound) over-exerted my shoulders pruning huge old lilacs and brought on shoulder pain for the first time since Feb.  So I will stay at 10 until this resolves.
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