Do hope this helps - I remember well how lost one can feel at the outset of this illness - and here is that much-need hug albeit virtual
Very best wishes.
Thank you so much for responding. It really helps to know that things will get better. I consider myself a very active person and full of energy, so this is a real setback. I will certainly take your advice. When you say anti-inflammatory foods, what do you mean? I appreciate your comment about pacing myself. It will be hard, but I understand why I need to keep myself "stress-free". (Might be a bit hard, since I am a first grade school teacher!) Thank you for the hug! Hope to hear back from you sometime.
Take care. Hi Tuni!
Welcome! Have a virtual hug from me too
You will feel better now you are on steroids - just don't get over-enthusiastic and think you're cured! The steroids reduce the inflammation that is causing the pain and manage the disease. Some people are never pain-free, others are almost back to normal as long as they take a high enough dose but the aim is to get the dose down to as low a level as possible, where you can function well with a minimum of both pain and side-effects. The side-effects can be about "now" (hot flashes, weight gain, hair!) or about a long time ahead (osteoporosis, diabetes etc) and need to be monitored.
Read around this forum and go check out the UK one at patient experience uk and you will find lots of stories from people who ski (me), cycle, play golf and lots of other things. But don't expect to be the same as anyone else - PMR and steroids affect each of us in a different way. The common thread is to manage your pain and pace yourself - the steroids won't change much about the fatigue if that is a feature of your PMR. You could also follow the link below to the British support site which has a load of info and stories from patients and doctors about PMR and steroids.
And a major warning - don't try to rush yourself off steroids or let anyone try to force you to do so too quickly. You need a low dose, not a no dose for the present. There is a mine of info about tapering on these forums if you take the time to read them - try to find the time. Too rapid tapering might lead to a flare or even a major relapse, after which it is often more difficult to reduce the dose.
Good luck and keep in touch - both the forums provide good info and support, even if it is virtual. We've all been there so know what it's like first hand. It can only get better!
MrsE
Mrs. E-
Wow...this sight is amazing. Here in the United States it is Thanksgiving and I know I have so much for which to be thankful. I am thankful for my new "PMR" friends! I will look look into the link that you sent and appreciate your advice. Not looking forward to weight gain...took me years to get off the weight I gained when I was a youth, but know that it is all part of the treatment. By the way, will I lose some of my hair? I don't have much as it is! I am beginning to feel the hugs that you all are sending my way. Thanks so much.
TuniMy hair is fine - it was better but is still thick but has re-developed the curly bits of my younger days which have a mind of their own. It is a bit dry though. The usual complaint is of too much hair - peach fuzz on your cheeks and embryo beards!! The first goes away again as the dose goes down, the second can be dealt with and one lady said recently that she met a group of friends recently where she was the only one with a smooth lip and chin because she is so paranoid about looking and dealing with it!!
As for weight gain - rather cuddly than in pain and miserable. You can always buy a larger size. And that should also go away - in fact one lady from Dublin has LOST weight, so who knows - maybe you will too!
MrsE
Hi again Tuni......
.....and Happy Thanksgiving, by the way!
For anti-inflammatory foods, I have oily fish 3-4 times a week such as salmon, mackerel and sardines (the latter with the bones to also help with bone protection). I eat beetroot and garlic daily and turmeric when I can add it to a suitable meal such as casseroles or risottos. I eat lots of mostly organic veggies and fruits thereby trying to reduce my intake of toxins. If you try to restrict your sugar intake and also carbohydrates, you will hopefully find that you do not put on too much weight (I have gained only about 5lbs).
With regard to hair loss, like you I also have very fine hair. I did go through a stage of losing it but happily it has now recovered on the lower doses so don't worry if you do suddenly have a similar problem because it should resolve itself.
Hope this helps and good luck.
Dear Celtic and Mrs. E.
Well, I feel so much better having read your posts. I agree, better to be cuddly and bigger than to be in so much pain. I began taking fish oil a few weeks ago. My husband has been taking a dose of it for the last month or two and he finally convinced me to try it. I am not a big eater now, and love vegetables, so perhaps I can keep some weight off.
Not sure about the face hair...good thing I am a red head..perhaps it will not show!?! My twin brother has a beard, so now we will look more alike.
I am beginning to calm down a bit about all of this, but I know I will soon have a more questions.
Take care. Tuni
Tuni
Ask for a Vitamin D test to check your level. If low this also causes aches and pains.
See the Vit D thread on Patients Experience website. http://experience.patient.co.uk/
Long journey ahead of you and knowledge is power.
Mrs. UK
Thank you for the advice. I did not realize they could check my Vitamin D level. I was told by my doctor to take it, so I bought some calcium/vitamin D chews. I have an appointment soon and will discuss this with my doctor. I will read the website you suggested. Again, Thanks.
TuniTuni
Calcium Chew are OK, if your levels are not low - if they are they do not touch it. Mine was low and I needed 40,000 units per day for 10 days and now awaiting second blood test.
Also it should have been tested whilst they were doing the tests for PMR as low levels of Vit D cause aches and pains - it is one of the tests contained in the BSR guidelines - before a diagnosis of PMR is confirmed, if the Vit D levels are low - they will be boosted to normal and if the aches and pains continue and you then respond to 15mg - 20mg of steroids - its PMR.
I assume you do not live in the UK or somewhere like California?
Mrs.UK
Thanks for your help. I will certainly ask my doctor for the test. I am now on my 6th day of medicine and am beginning to feel somewhat better. Am also realizing that I have to slow down some until I have gained back some strength.
I am hoping to go back to work part-time at the end of next week and now face the problem of explaining this to my peers. This forum has been wonderful...I feel like there are people out there that understand exactly what I am going through, but when I go back to work I am not sure how to explain. While I appreciate my co-workers' interests, I am afraid they will think I am a bit crazy.
No, I do not live in the UK or California. I found this forum and it looked like a good one, so decided to join. I live in a rather unexciting state...Ohio. Not sure if we are famous for anything, except that we are considered one of the "swing states" in presidential elections. Ohio is comprised of many different types of people (voters) and we can sometimes greatly affect the outcome of an election.
Again, thanks so much. Best wishes.
Tunihttp://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
You could print this off and give it to them. The person who wrote it does not have PMR - but its good for explaining. The main reason for making our DVD was that it tells patients, but when family and friends look at it - they understand. You look good on the outside, its the inside that matters.
Mrs. Uk
Wonderful information! Thank you so much!
TuniWelcome to the forum Tuni,
The Spoon Theory is wonderful. Mrs. UK told me about it a couple of weeks ago, and I sent it to my family and closest friends.
I used to teach full time until 18 months ago when I was diagnosed with PMR. Now I teach part time, and sometimes even that is difficult. The worst part for me is the fatigue. I'm really grateful that my principal is so supportive of me! I teach reading to K through 2nd graders. I absolutely love the kids and really feel like I'd fall into depression if I wasn't able to be at school. The kids keep me smiling...
A big problem for other people, is that we don't "look" sick. It's really hard for them to understand what we're going through. The spoon theory helped the folks I sent it to. And I tell people that I have an "autoimmune" disease called PMR. If you say it's a form of arthritis, everyone and his uncle tells you that they have arthritis too, and then they don't understand the seriousness of it.
Take care and here's another hug!
JannieJannie
Thank you for your reply. I love the spoon idea and will certainly use it when I am questioned. I agree with you about calling it autoimmune disease. I have told a few people that I have "curable arthritis" and they do not understand.
So, how are you feeling overall? How much prednisone do you take? I am concerned about the side affects, but I realize there is very little I can do, except watch what I eat and exercise. I agree with you about the fatigue. Prior to getting PMR I had a lot more energy and my friends and family teased me because I was always on the move.
You sound just like me when it comes to the students. They are so sweet and forgiving and understanding.
Thank you for the hug and for taking time out of your day to write.
Tuni
p.s. Are you from Montana? My husband and I hope to visit there soon. We have heard it is beautiful.Tuni - it is very common for people who were very active to develop PMR. It is, of course, possible that we notice its effects more and are less likely to accept that "it's your age, what do you expect" so go to the doctor. I am quite sure there are many who just put it down to "rheumaticks" and are never diagnosed as having PMR.
Once you get down to about 10mg a day the side-effects diminish greatly, it often also gets more difficult to reduce from there. However - not everyone gets side-effects, no-one gets them all (there are 82 listed ranging from minor to serious). With respect to exercise - don't force yourself as that will only make the whole fatigue thing even worse. If you can walk, try to do some every day. If you have muscle wasting from the steroids a physio can suggest exercises to help - light weights and bicep curls for example.
And eating - a study by Danish scientists looking a different diets and maintaining (i.e. not regaining) weight has just been published and shows that high protein (25% of total calories) combined with low GI is the most successful. It is the largest study to look at this and did proper controlled trials with 4 of the most commonly recommended types of diet. The high protein part reduces the muscle wasting that you get with weight-loss diets and which can also be a problem when taking steroids. It also stops you feeling hungry quickly so you don't want to snack. What does need to be very restricted is anything made with refined flours and sugars. Basically, the whiter the flour the faster the blood sugar level rises after eating it, inducing the body to make insulin to reduce the blood sugar level. This then falls quickly and gives you those hunger pangs so you snack on a high sugar bar or something so the process is repeated. Having insulin in your blood also encourages any excess calories you have taken in to be deposited as fat - mainly around the waist. Taking steroids also has an effect in the way your body responds to insulin and makes the effect greater.
Good luck and more hugs - you'll get the hang of it soon and then the psychological aspect of having a chronic disease will improve too.
MrsE
MrsE.
I appreciate the information. I am a big starch eater....donut for breakfast, crackers for lunch, etc. I have been trying to eat more fruits and vegetables, and meat. I love red meat, but have heard that is not a good PMR food, so have been eating more chicken/turkey. And, as I posted earlier, I take a dose of fish oil everyday. I am trying not to feel sorry for myself and have made some progress in adjusting to all of this, but it is difficult.
I go back to work today....teaching 26 first graders. I am excited, yet apprehensive. I am not known to be a teacher that sits down while she teaches, but today I might have to take a few more breaks than usual.
Thank you for more hugs. This forum has been so wonderful. I feel like I could ask any question about PMR and there would be someone who would help.
-TuniHi Tuni,
I'm down to 11 mg. of prednisone now. I've been as low as 9mg., but the pain was too much for me. All I wanted to do was lay on the couch and weep. I went back up to 10 mg., still no good. So about a month ago I increased to 11 mg. and I'm doing much better. Still some pain, mostly hips and shoulders and FATIGUE. Like Mrs. E. says, getting below 10 mg is tough. I have to have my light out by 9:00 (actually 8:30 is better) to get up for school at 6:15. If I over-do, which I did on Thanksgiving, I really pay the price later. It's not pretty! The hard part is to learn to pace yourself. Lots of rest breaks.
I'm one of the lucky ones and haven't gained weight with this. In fact, I've lost weight. My rheumy is always surprised when she sees me! The worst side effects of prednisone for me are the moon face and bruising.
I was super active as well before PMR struck. It seems like most of us were. That's one reason this is so difficult. I actually was able to kayak a bit this summer and ride my horse short distances! Nothing like before, but still....If I get enough rest, it's easier to count my blessings.
Hope your first day back to school goes well. The kids will be happy to see you!
Gentle Hugs,
Jannie Jannie-
So you started at 20 mg eighteen months ago and now you are at 11? I am anxious to see how long I will be at 20mg.
My students were very nice to me upon my return and I had a good day. Very glad I started on a Wednesday, however, so I only have two more days to go. It is only 8:30 and I am already in bed...decided to take everyone's advice and take things slowly for awhile. As a teacher I am sure you will appreciate this....I have been off work since November 10, I returned today and found a note in my mailbox saying that my principal is observing me tomorrow! No breaks for me I guess! This is my 30th year, so it will be interesting to see what the young lad has to say...
I agree with you about many of the people on this forum saying they were very active. It makes me wonder why us? Do you think our bodies are trying to tell us something? I certainly have seen things differently since all this began in August. Really shows a person that they can not control everything around them.
Well, thanks for the post. Gentle hugs back at you...
-TuniTuni - as I've said before, I wonder if it is the fact that those of us who were used to doing loads are more aware of how much we are limited by PMR. We are also a generation that is not ready to be old - think about your mother or aunts at the age we are at now. Both my mother and mother-in-law were "elderly" once they got to their mid to late 50s - I just can't imagine either of them going skiing as I still do, and intend to do for some time to come! I was just going to say to Jannie I can't even envisage the idea of getting up at 6.15 - but I do start at 7am to go skiing in the high season to get out before all the tourists appear. However - bed at 9pm is my preference but my husband then wakes me when he comes to bed at midnight as he is incapable of getting into bed quietly! I've compromised, I go to bed later so I'm more likely to be in deep sleep!
Tuni - hope the obs go well - maybe he'll learn something!
Hugs, MrsE
Tuni,
18 months ago, I started on 40 mg. of prednisone. When PMR first came on it was really severe, I couldn't turn over in bed or lift the covers. It was really hard to move! So I went to my family doctor who didn't know what was wrong. He's the one that started me on such a high dose, just to get me moving again. And it was like a miracle! After a couple of days at 40 mg., I practically ran into school with energy to spare. I wasn't able to see a rheumatologist for 2 1/2 months. The closest rheumy is 65 miles away. Anyway it's been 18 months of coming down from 40 mg. Thought I should clarify that for you.
Mrs. E., I'm impressed that you're able to downhill ski! I'm a downhill skier, as well, but I don't think I could do it right now. I might have to try my cross country skis out this winter...fingers crossed!
Gentle Hugs,
JannieJannie - I start SLOW and the quads protest - but by mid-January I'll be able to spend 3 or 4 hours up there if I want to and the weather is good enough. I'm a fair-weather skier, like to see where I'm going! Thank goodness for chairs and gondolas to recover in! The movement of downhill skiing has always been able to get my hips and shoulders moving, even before steroids.
Who cares - the views are fantastic, the people great - even the tourists mostly - and I'm in the sun and fresh air.
MrsE
PS - cross-country is WAY too hard work! At least with downhill the really hard work is done for you! Long live lifts - and ours are all chairs or gondolas, some with heated seats!
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