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jaydy

Posted , 4 users are following.

Jaydy
Jaydy

Having suffered from PMR for 11 months I have now been diagnosed as diabetic, obviously as a result of the PMR and its resultant medication etc. My doctor has said to avoid sugar etc and try to lose some weight (which has been caused by the preds!) Is there anything else I should be doing? I am just assuming that if there is the doctor would have said ,but at the  moment I am overwhelmingly tired most of the time and keep falling asleep. I know that I am over 80 and must expect to slow down a bit, but am active by nature with a number of hobbies and interests, most of which I am finding it impossible to participate in.

5 likes, 10 replies

10 Replies

  • EileenH
    EileenH Jaydy

    Posted

    Most of us - whether over 80 or not - have had to cut back what we did prior to PMR. It is a sad fact of the management of the illness. The pred deals with the inflammation and pain - we have to do the rest.

    I put on over 40lbs because of first untreated PMR for 5 years limiting what I could do and then one particular form of pred led to fast weight gain. Since being put on another sort and being VERY disciplined I have lost all that 40lbs and am aiming to get back to pre-PMR weight.

    I used the 5:2 fasting diet as a basis and have also cut carbohydrates drastically: no processed carbs at all, I cook from scratch and eat carbs in the form of veggies grown above ground - no potatoes, a few carrots but mainly salad greens and veg. I'm also very strict on portion control - meat or fish is rarely more than 4oz raw weight. I don't refuse to eat carbs - if we are out for a meal and the dessert menu is too good to resist I don't say no. But then that isn't every day! I rarely feel hungry - but there is nothing the matter with feeling hungry: it is a healthy thing to feel. I remember it being a common sensation when I was a child - you were starving before your next meal. How often does that happen these days? As soon as people feel hungry they reach for a biscuit or something from the frig, as if it were a bad thing and should be stopped.

    Cutting carbs with pred does seem to help the weight gain problem - pred changes the way our bodies process sugar so it also will help with the Type 2 diabetes problem - reduce the sugar your body has to process and the problem must improve.

    As for the hobbies - Constance has written in a thread about how she is now using the "Spoon Theory" by Chrstina Miseriando, a parable about husbanding our resources when we have an autoimmune disorder that leads to fatigue, which most of them do. First you do what MUST be done (not necessarily the cleaning by the way), then you do what you WANT to do. And if you have any spoons left you can do other things...

    • Jaydy
      Jaydy EileenH

      Posted

      Thank-you for your helpful reply. I already have a copy of the spoon theory which I found to be very relevant in many ways. I find the food issue very hard - particularly having a husband who cannot  tolerate salads or too much fruit and tends to want to live on carbohydrates (and sugar) which he assures me at almost ninety suits him very well!

      I guess I must just soldier on to the best of my ability. My GP stopped some of my old medication and asked if I wished to discontinue my statins although she would really advise against it so I have continued my 40gr atorvastatin although I sometimes feel that they contribute to some of my problems.

    • EileenH
      EileenH Jaydy

      Posted

      In some ways I find that problem quite helpful! I eat what I want - salads and veg. He eats something and chips. On a permanent basis. Never mind 5 portions of fruit/veg a day - I doubt he eats 5 portions a month! He doesn't eat apples - too hard work, will eat a quarter of a banana in raclette (a Swiss cheese dish). If we eat roast chicken, steak and a few other things we eat the same thing except I have a massive plate of salad, he has spuds (roast or chips). He had cancer 20 years ago and stopped eating the food we had eaten as a family for the 15 years previously. I've given up arguing and in some ways it makes life simple. In the UK it was easier - steak pies, sausages, bacon... None available here in Italy. For him fish is cod deep fried in batter - mercifully that is available frozenfors oven cooking here - I roast a bit of salmon, whole fish and so on that takes the same amount of time, just on a different dish. The bottom of the fridge has large bags of lettuce and radicchio, lambs lettuce and rocket and I buy a kilo or so of cherry tomatoes a week. Bottles of olive oil, vinegar and herbs. Job done!

      I'd really try dropping the statin - especially if your doctor offered you the option. They are well known for causing PMR-type problems.

    • Jaydy
      Jaydy EileenH

      Posted

      Thanks for your comments - I always find them useful. I tihnk I will try dropping the statins for a period. Ironically the duty doctor that I saw the time before last (who was not my own GP) doubled the dose from 20mg to 40mg and discontinued my exetimibe - maybe I should leave them off gradually ie down to 20mg and then to none.
    • helenemiles
      helenemiles EileenH

      Posted

      Hi Eileen

      I have just been having a read and wonder if statins may have contributed to my symptoms ??

      i am on atrovaststin 10 mgs . This was given as a life long preventative along with aspirin following a small clot , stenosis in my left shin in 2010 . No high blood pressure .... Peripheral vascular disease ...

      i was originally on the cheaper version but had evident side effects  so was swapped . 

      Would appreciate your thoughts .

      helene 

    • EileenH
      EileenH helenemiles

      Posted

      Within a week of being put on atorvastatin I was almost in a wheelchair - OK, I already had PMR. I'd expressed great reluctance to take any statin so wasn't given simvastation which has by far the worst record (mostly because it has been used for longest and for more patients). I stopped it after less than 10 days and felt better within days but it took me months to get back to where I had been pre-Lipitor. 

      I discussed it immediately with the pain doctor, an anaesthetist, and a couple of weeks later with the cardiologist, Both thought my decision was right and the cardio said I didn't need to try anything else as atrial fibrillation wasn't a "cardiac event" anyway - it was non-cardiac specialists who made the statin decision because of an elevated cholesterol.

      I cut carbs and my cholesterol is now down to normal range - and I have a very high HDL so it is actually lower than it appears. If you want to change cholesterol by diet - cutting carbs is by far the most effective way to do it.

    • helenemiles
      helenemiles EileenH

      Posted

      My colesteral levels have never been high .

      popped on them following peripheral vascular disease diagnosis as that is the recommended long term treatment along with aspirin .

      more preventative rather than reactive . 

      Basic statins prescribed , experienced awful side effects .

      helene 

    • EileenH
      EileenH helenemiles

      Posted

      If you have a look at the statins threads on this forum you will find a lot of other people who have had bad side effects. Only now is it beginning to emerge that they are not necessarily the innocent and wonderful life-savers the manufacturers have persuaded doctors they are. The thought that they should be handed out like sweeties to everyone, at risk or not, makes me cringe.

      If they are the cause of your ills - do you really want to live with this for life just in case the statin might reduce your risk of a heart attack a very small amount? PMR was bad enough - the statin side effects I had were far worse, I couldn't walk more than 50yds without being convinced I was having a heart attack.

      The only way to see is to take a break and see if things improve - and then go back to the drawing board. I think it is simvastatin that actually mentions PMR in the list of side effects - maybe not in the bit of paper in the pack, but on one of the company's website ones.

    • helenemiles
      helenemiles EileenH

      Posted

      That's great advice thank you .

      i think I will have a 6 week break and monitor if there is a change .

      you are right , they are dished out like smarties with little thought or review.

      really helpful smile

      helene 

  • christine_fay
    christine_fay Jaydy

    Posted

    Oh! Poor old you having such a thoughtless doc telling you to lose wieght while on Pred.... shame they don't bother to give you any idea how. I must admit cutting out red meat and alcohol has done wonders for me... being a chef I have also had a lot of Vegan jobs recently so have had to explore many new recipes... I make almond/cashew vegan cheese now and it is so pleasant I often have it instead of real cheese... very low fat and grills a treat on toast! The longer you leave it the better it gets!

    It can open a whole new way of life and give you a new interest.

    Best of luck.

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