for the past year Ihave suffered with depression, pains in my thighs and arms have had problems turning over in bed, have not wanted to eat, the only food I w,ant is ice cream and rice pudding, I am on the heavy side but have lost no weight at all which I do not understand, I feel really low when I wake up in the morning for about 45 mins. 8 months ago I went to see a hip specialist who x rayed my hips said they were fine and diagnosed me with hip bursitus,the doctor then put me on depression medication, I then had an ulcer on my tongue for about 8 weeks my doctor sent me to a mouth specialist who referred me to a rheumatologist because he thought I had polymyalgia, during all this time I have not wanted to do any of my hobbies or even go out. my rheumatologist has done many tests on me and wants to start me on steroids next week, please can anyone tell me if they have gone off eating in such a big way,have not eaten meat for a year now,would love to hear from anyone else who have had these symptoms. thank you.
Vanessa, I'm sorry to hear how poorly you have been and for such a long time - I can relate to that as I was unable to get out of bed for many months during a year of non-diagnosis.
It isn't surprising that you have gone off your food if you do have inflammation of untreated PMR coursing through your body. Although this wasn't one of my symptoms during that first year, I went on to develop additional symptoms, later diagnosed as Giant Cell Arteritis, a linked illness to Polymyalgia, and went right off my food with nausea and vomiting and lost almost a stone in a month. Weight loss is very common pre-diagnosis, but as you have put weight on, if it is PMR it could simply be because you have been in too much pain to exercise.
If your rheumatologist starts you on a trial dose of 15-20mgs a day of Predisolone, and you feel an improvement in your symptoms of around 70% in a very short time (sometimes in hours or at most a week or so) then he will probably take that as confirmation of PMR. If you do not experience this fast response then he will probably investigate you for other conditions, such as a hormone/thyroid/Vit D deficiency - these test should be done anyway to eliminate reasons other than PMR.
I do hope that helps, but do keep in touch and if you have any further questions we will be happy to try and answer them from our experience with PMR.
If you do start steroids next week, it will certainly be advisable to eat before taking them.
thank you for that, please tell me when you had pain was it all the time,mine is not, I have had times when it has been hard to walk then times when I am ok to walk, am always worse at night when am in bed and feel terrible when I wake up, have just nbeen away and rheumatologist gave me a injection before I went, it made me feel so much better in all ways but only lasted for 2 weeks
Yes my pain was continuous, but we are all different and therefore can react slightly differently to both the illness and the treatment. I'm assuming the injection the rheumatologist gave you was a steroid injection, in which case it must be reassuring for you to know it helped to relieve your symptoms, even if it wasn't very long-lasting. People do react differently to these injections as well with some saying their relief lasts longer than others. Just popping out quickly to catch the shops before they close so will have to scoot.
I was in incredible pain before diagnosis and was told it was a virus. I would lie in bed on my back and any movement was agony. I could not lie on my side. I was just not hungry and did in fact lose a lot of weight. The trouble is if you are then put on steroids you are hungry all the time! Well I am. On the other hand they really are a miracle drug if you have PMR. I do hope the steroids help, if it is PMR they will and your life will change.
This will be moderated and will be delayed.
If you go to pmr-gca-northeast.org.uk and click on Useful Medical Information, read the British Society of Rheumatologists guidelines of the Diagnosis and Treatment of PMR.
You need to find out all about it as a newly diagnosed person. It is also worth reading other things on that site and looking to see if there is a Support Group near where you live.
Keep coming back to this site and asking the question. Does not matter if it sounds like a 'daft' question. Some of us have been there and done that and will be able to help.
Good Luck in this strange journey nobody wanted to take.
No sorry I haven't gone off my food so much. Did find it easy to cut meal sizes and did lose weight a little bit. then with the Prednisone I found I was always hungry and have put a lot of the 7 kgs I lost back on so that was a negative however I'm still in the okay weight range andwill be watching very closely what I eat. No much help to you
Hi Vanessa
I too had absolutely no appetite in the early stages of pmr. I was adamant I was going to take steroids if at all possible so struggled severely for about 8 months trying to control inflammation with ibuprofen then aspirin when the ibu became too 'head-thuddy'. I forced myself to eat as well as I could and started reading reading reading about pmr. This forum has been so helpful - thanks everyone.
I am fortunate to have a moderate level of pmr at the moment but what I decided to do in about March was to give up bread and pasta. I also consulted a nutritionist who helped my with immune system supporting vitamins and minerals (inc zinc, copper, vit D, iodine etc). Some of these I may not have needed but they were at low levels do I figured at least worth a go. I've tried to eat as healthy as I can - lots of fish, veges, some fruit, nuts, whole grains, some dairy (but next aim is to stop dairy and sugar).
Now after 4 months gluten free (I am not officially gluten- intolerant) I am feeling tonnes better. My appetite has mostly come back.
Are you still eating mainly ice cream and rice? Can you try to swop a rice pudding for veg, brown rice etc every now and then? Getting what you eat a bit on the right track might help you feel a bit better overall. There is a great book I just discovered called Potatoes not Prozac by Kathleen DesMaisons. It's all about our relationship to simple sugars and how that's at the route of contributing to many inflammatory conditions. Again I'm not saying this is a complete answer but over the last couple of days I've gone through withdrawing from aspirin (not a nice experience) but gone out the other side feeling better. I still have pmr pain but it's tolerable and far less that 4 months ago.
I know not everyone will think this is the way to go with pmr but I thought I'd share my story so far.
All the best and hope you find a way to feel better.
thank you for that, find it really difficult to find out all about pmg although have read a lot about it was not aware that you could have a mild case, perhaps that is what I have as my pain is worse at night and first thing in morning, when i just wanted to cry and did not want to be left on my own, my doctor said it was depression and put me on citalopram, I am not a depressed type of person, as for going off my food, dont want any meat or veg not even potatoes Ido eat a banana every day and try to have some fish, am overweight normally and have not lost any weight but eat a quater of what I would normally eat, am seeing a really good rheumatologist who has carried out a lot of tests to rule out other things but thinks it must be pmg, really admire you for what you are doing but because I am not eating a lot would find it very hard at the moment, but thank you so much and please stay in touch.
Hi again Vanessa really appreciate howyou are feeling. I'm not a dressing sort of person but over the last year I have felt all sorts of anxiety, craziness and depression as I've tried to come to terms with pmr. Couldn't get out of bed etc
Will keep in touch and post if I find anything new / good.
X
There is no evidence that any diet makes a significant difference although a good diet will help a lot generally. I was gluten-free when I developed PMR but I feel a lot better when I reduce carbs a lot and eat loads of veggies and a bit of fruit rather than processed carbs. Everyone is different but you are likely to feel low both because of PMR and a poor diet.
PMR will respond dramatically to a moderate dose of pred - 15 to 20mg. It is worth trying. Injections will work for a short time - but the pred cures nothing, it manages the symptoms so is needed longterm, up to a few years or so but at a lower dose than 15mg.
thank you so much for your information, did you loose your appetite or get depressed before starting preds.
I didn't lose my appetite but depression is common in many autoimmune disorders and I probably did have depressive mood yes. Being ill itself with no answers especially will induce depression.
Dear Mrs O, last week I fell and broke a bone in my foot, saw a specialist yesterday who said to tell my rheumatologist not to start me on preds for at least 3 weeks giving me time to heal, I did not realize that you had flair upps with PMR, being I believe I have had it for a long time my boubts were when I read articles about it the pain was with you all the time, mine defernately started in my hips, then my arms then shoulders and my hands but have never had them all together it seems to move about from place to place, then I have a short remission and then starts somewhere else, but all this time I am defernately off food this has never changed until rheumatologist gave me a shot of 120mg of depomedrone, I then started to feel much better in myself and my appetite increased slightly but after 2 weeks things went back to normal, please tell me if this is normal with PMG. Thank you for your help.
Vanessa, I'm so sorry to hear you have broken a bone in your foot on top of everything else. I'm not a medic but if your rheumy believes you have PMR and wishes to put you on a trial dose of Prednisolone, then I would have thought it is more important to tackle your long term pain and inflammation in your body immediately rather than follow your other specialist's advice yesterday not to start Pred for at least 3 weeks to give your foot time to heal. If it were me, I would contact your rheumatologist on this one.
With regrd to the Depomedrone, as I have mentioned previously some patients find the injection gives them relief for up to a few months whilst others say the relief is very short-lived. It is far more likely that a continuous dose of oral steroids will be more successful long term yes, we can still have flares in the disease on and off throughout treatment but such flares are generally due to reducing the steroid dose either too soon or by too large an amount.
Do contact your rheumatologist and let us know how you get on.
Hi,need to ask you as you are not on preds, do you get the pain continually, only mine seems to come and go , maybe a week or two in my hips then to one arm and then the other then to my hands, always worse when go to bed and first thing in morning feel really awful but within a hour feel better, my rheumatologist wants me to start on preds but am really unsure, he gave me an injection od depomedrone and felt much better for 2 weeks then it all came back again.
Hi Vanessa
Yes I do still have pain in shoulders, hips, around pelvis, sometimes in my knees etc but with aspirin I've been able to manage it over the past few months. Pains are worse on some days and yes first thing but I can function. If I get lots of sleep the pains are always less.
I have recently stopped the aspirin to see if I am any better without it and I'm very pleased to say I am much better than when I had the big flare up 9 months ago. So as far as I can see, with the moderate pmr I seem to have, I can live without pred. Of course there is the possibility of flare ops - once we have this autoimmune disease it is always potentially there. If an infection causes the flare, not much we can do so I will review then of course.
Hope your foot isn't too sore - I think if you have moderate pmr like me, and you can tolerate taking ibuprofen or aspirin under the guidance of your gp or rheumy then you might be good to go down that route at least until your foot gets better.
I've actually just had a second opinion outside the UK where I live, and the consultant (in Belgium) was very happy to support my approach to managing the pmr.
So I'll continue and let you know how I get on