Got to the Rheumy this time!

[suzy1959]

I had my Rheumy appointment today ( after missing it on Friday). This is the second time I have seen Dr Hughes in Chertsey and both times I have found him so reassuring. This appointment was so important for me as I have been in a lot of pain, especially in my right thigh, both knees and my right hip. He injected my knees with steroid and, explaining that it is my fascia in the thigh that are really tight , probably because of the inflammation from either the PMR or the OA, he gave me another injection in my bum to try to relax the fascia, which no one else has been able to do or understand for the last 6 months or so.

He explained why the knee orthopaedic specialist told me that steroids accelerate OA ( scaring me so much)- they are trained to think that even though it is not true!

He also told me that it is fine to take neurofen for my pain as I am not on high doses of Pred. (9.5 currently), which means that maybe I can stop taking co-codamol (which makes me very sleepy). He said I would know soon enough if it aggravates my stomach.

He recognised what an effort I am making to lose weight which will really help with the pain- I have lost 21kgs. so far, 6 kgs. more than the steroid weight I put on, and encouraged me to carry on.

Overall, he is reassuring, calm , confident and respectful of my knowledge and experience with PMR.

Thank you to Celtic who put me onto him and to PMRpro for explaining myofascial pain and bursitis which helped me to communicate my difficulties.

[PMRpro Ambassador]

Oh well done Suzy - 21kg is absolutely superb! You must almost be disappearing.

Rod Hughes needs to be cloned - or there should be a central PMR/GCA service, headed by him and Sarah Mackie from Leeds maybe with one or two others whose names I don't know, which beats some sense into the rest of the rheumatology community.

[suzy1959 in reply to PMRpro]

Hear Hear!

[DorsetLady PMRGCAuk volunteer]

Hi Suzy,

Well done on weight loss! Interesting that steroids don't exacerbate OA, I

I've often wondered about that, and that at low doses it's ok to take something other than co-codamol. Like you, that makes me sleepy - not very good when you live in a rural area and have to rely on driving everywhere!

[lesley2015]

Well done Suzy! Any tips on weight loss please??

[suzy1959]

Actually, I have always had a weight / eating problem- virtually addicted to sugar! So steroid weight gain I did not need! It took the scare of my knees collapsing that made me face all this ( despite many years of psychotherapy, diets, slimming clubs etc.) I saw a specialist counsellor ( I am a counsellor myself) to help with developing a healthy, sustainable eating pattern that is for life and then I am also seeing a psychotherapist to support me through the PMR /pain journey, the difficulties of elderly and declining parents who have not been great parents to me, i.e stresses, to try not to use food as a support anymore.

The weight loss has been slow but actually quite easy once I gave myself permission to eat anything I really wanted, so nothing is off limits.Paradoxical isn't it?

Good Luck with your journey!

[lesley2015 in reply to suzy1959]

Thanks Suzie, so pleased you have managed to resolve those eating issues, I have tried WW and Slimming world, but am now working on healthy, low white carbs/sugar, lots of fruit and vet and portion control, and not beating myself up. Still on 30mg preds, so its a challenge.

Best wishes to you!

[pmrdec112014]

So impressed Suzi! Well done and green with envy! X

[Celtic PMRGCAuk volunteer]

Suzy, so glad the M25 behaved today and you arrived at this one in time. It sounds as though your body was a bit of a pin cushion, so let's hope that at least one if not all of those injections work. It sounds like a good appointment all round, with lots of knowledgeable explanations, reassurance and treatment - Dr Rod Hughes at his best.......as always. I bet you left the hospital much more light-hearted than when you arrived!

As for the weight loss - wow! And still on steroids, so very well done, Suzy.

[5lupins]

Always hard dealing with parents. Glad you had a good appointment. Hope everything goes well, sending good wishes from a very gloomy Yorkshire. Jen

[trish29]

Hello Suzy, I am so pleased you got to see Dr Rod Hughes and all went well at your appointment. I hope that your steroid injections help you and you get pain relief.

Dr Hughes is the Best Rheumatologist that I have seen in all my years with PMR and I have certainly experienced some very unhelpful ones .I agree with PMRpro that Dr Hughes should be cloned, he is very understanding and I've never come out of his clinic in tears like I have with others .I hope your Pain settles down now Suzy. In the past Dr Hughes has told me I can take nurofen instead of Co-codomol but my stomach doesn't tolerate it. Well done on losing weight, I fight that all the time ..Best wishes trish29

[Charlie1boy]

Fantastic with the weight loss Suzy! Well done - you really have to be very single minded to achieve that. You are an inspiration.

Good luck

[Lizwillis]

Hello Suzy,

So glad to hear after your traumatic time last week that you had a very good appointment with such encouragement. You have done amazingly well with your weight too, which must make you feel so much better. It is interesting to hear that you are able to give yourself permission to eat what you like and that weight loss is achievable. I have only been on steroids since October 2015, starting at 20 mg, now down to 14 and a bit wobbly, but also with all sorts of family stresses including a very difficult 97 year old mother, and have put on a stone on top of being overweight already. So, any other helpful advice about eating and weight loss would be very welcome! ( like you sugar in the form of biscuits/ chocolate is my comfort)

DriftwoodLiz

[PMRpro Ambassador in reply to Lizwillis]

Have you looked at the 5:2 diet by Michael Mosley? It was on a TV programme in the UK but there are also books. It works on the principle of 2 days a week, not consecutive ones preferably, you limit what you eat and drink to 500 calories but the rest of the week you eat normally - which again means that nothing is totally off limits, tomorrow isn't a diet day and you can have that piece of chocolate or ice cream. I used it to reprogramme my "appestat" - to learn better portion control and it worked very well. I had to combine it with cutting carbs drastically to lose weight and it was very slow but it did make a massive difference to my expectations of a plate of food. Eating out is now very cheap - we both get at least 2 meals out of one plate full and take a doggy box with us...

[Lizwillis in reply to PMRpro]

Thank you very much for your suggestions. I have been wondering in actual fact whether one of the things which would be good, in any case, would be to reduce the amount on one's plate. So will revisit the 5:2 book. How do you cope with splitting a meal when out though? Maybe the thing is to get just a starter?!!!! Reprogramming the " appestat" sounds like the way to go!

[PMRpro Ambassador in reply to Lizwillis]

We don't live in the UK which helps - if you don't want all that is on your plate then they happily "pack it ein" as my daughters used to say and we bring it home - a pizza each from the village (we don't like the same things) provides an evening meal and 2 lunches for both of us. David often orders a child's portion of Wienerschitzel and even that is too much for him! However, when I remember I pop a plastic tub or two in my bag.

We have one lovely local restaurant where at lunchtime the portions seem to be smaller - and perfect for us, or we have a starter plus a dessert between us (one plate, 2 spoons, their desserts are to die for!). Others with a reputation for large portions will happily bring one meal and 2 plates - though occasionally I have found places where they have the cheek to charge for an empty plate. Seemed a bit stupid since the cutlery was on the table... I shall order one meal.

There is evidence that if you use a dessert plate instead of a dinner plate you are satisfied with less food - and one study found that as the average size of plate has increased from about 9in to up to 12in since the 1960s portion sizes have as much as doubled. For those of us brought up in the 50s and told to eat up what was on our plate that has also led to us eating far more than we used to. Plate colour also makes a difference - you eat less off a red plate apparently. So filling a small red plate for your meal leads to you being satisfied with less it seems.

[Sandradsn in reply to PMRpro]

I lost 2 stones on the 5:2 way of eating,before pmr and Pred.I am 8 lbs over my ideal weight now due to Christmas mainly. I would recommend Kate Harrison s book 5:2 diet

[suzy1959]

I don't think I have ever been called an inspiration before! Thank you Charlie1boy. Personally, I was advised not to do the 5:2 plan. It is still technically a diet and it doesn't really change your habits, so I don't think it would work for me. My weight loss is slow and steady ( like steroid reduction!) but I am also able to go out for meals, eat puddings if I want to and have a glass of wine if I want to. I have never felt so in control when not on a diet. I always felt very out of control of my eating, especially when I had been on a diet for ages and suddenly felt I couldn't do it anymore- it was too hard! This way, there is no alternative- this is now my way of life- it is not temporary. I have to make it work!

[Lizwillis in reply to suzy1959]

I must say I have tried a number of diets over the years including the 5:2 which I just could not get into. Also tried hypnotherapy. Nothing has worked for me apart from losing weight before a gall bladder op years ago, restricting fat, but this is probably not healthy. Also, not sustainable, like you say. Like another lady has said, I hate looking ( and feeling!) like a bull frog and being three stone overweight now. Along with coping with the PMR and now accumulating family stresses, I am beginning to get very down about the weight and struggling to keep cheerful and supportive which I like to be. It sounds like changing one's habits, from what you are saying, is the way to go, and that you have had help with this to get to where you are now. Also, to not restrict what you want to eat, and being in control and be normal! Can you say what kind of counsellor to look for, please? How you are managing sounds very appealing and sucessful. Well done with managing all this along with all your attendant health issues. Not easy!

[HeronNS in reply to Lizwillis]

I think it is beginning to be recognized that people with weight problems are actually in this position more because of the quality of the food we are being sold these days than from any lack of will power on their part. If our microbiome is out of balance we will be very likely to make food choices that lead to weight gain. This is a complicated subject but if you have time you could do some reading about encouraging a healthy microbiome. There is more bacterial dna in our bodies than human dna, so it stands to reason its going to have a huge effect on our wellbeing. I've been eating a lot more fermented foods lately (yoghurt, kefir, various fermented veggies) than before, and a lot less wheat or other grains. Hope it helps the inflammation of pmr to go away, part of a many-faceted approach to dealing with this really annoying disease!

[PMRpro Ambassador in reply to suzy1959]

I'd dispute "the 5:2 doesn't change your habits" - it was exactly that that it achieved for me. You can actually eat an awful lot of veg and lean meat for 500 calories in a day when you concentrate on food choice and it makes you think about what you use in a meal. Within a few weeks I no longer felt hungry after a low calorie bowl of soup for lunch for example - and didn't need as much to feel satisfied, not always eating all that was on my plate on the other days.

"I always felt very out of control of my eating, especially when I had been on a diet for ages and suddenly felt I couldn't do it anymore- it was too hard!" - you never have that on the 5:2, tomorrow is always a "normal day" when you can go out for a meal but slowly you want/need less and less to be full. But combining it with the reduced carbs view I also removed any taste for sweet food after several weeks, it takes about 6 weeks to reeducate your palate about any taste.

You are quite right that any "diet" won't achieve anything in the long term, it has to be a reappraisal of what and how you eat, but the 5:2 approach DID help me do that. I didn't actually eat very much of the sort of thing that I shouldn't - not much fried, nothing deep fried at all, very little bread and cake about once a year. But I was eating too much for ME - not any more.

[Lizwillis]

Thank you everyone for all your helpful thoughts and comments. I have started to be aware of how much I am eating. This is a beginning I think. I shall revisit some of the suggestions and try and integrate them. No time seems to be a good time to tackle this tricky issue, and at the moment there a number of very difficult family things going on with various family members which is emotionally wearing. However, with such good positive outcomes and suggestions I am feeling encouraged. Many thanks to all of you.