I was just recently (Not even two weeks ago) diagnsed with PMR- the pred had me feeling better in 48 hours and 99% pain free by the third day- we are confidant we are on the right track here! However, it took several months to diagnos and was not thought of immediately because I was in my thrities when I first presented (I am 41 now) which I guess is very very uncommon. Anyone else a young 'un? Also, I am having pain again today after a week of releif- it's maybe only a 4, which previously was my GOOD days, so I can deal, but is this normal?
Hi, Welcome to the PMR forum even though we would prefer not to be here. I am a newbie to PMR just got diagnosed November and am still learning quite a bit. Some of the more experienced ladies or gents will be able to answer any of your questions. This is a great forum where you will get lots of support and information and advice from other users. Hang on in there and I am sure someone will be along soon to talk with you. Good luck on your journey. Pat
Thank You Pat
I am actually HAPPY to be here- I have a diagnosis and it's not fatal- I am undergoing treatment and it is WORKING= Happy! I have been through so many cancer screenings its not even funny, so PMR for me is a relief!
Hi.
Yes you are the youngest person I have heard of, having PMR. I keep being told I am young to have it and I am 55! As for your pain level increasing today, I am thinking that having been almost pain free for over a week, you have made the same mistake most of us did (and sometimes still do) and have done too much. This is a sure recipe for PMR pain next day. The only way to get the pain back under control is rest, rest and more rest. Strangely, this is one of the hardest lessons to learn in controlling PMR. During the time PMR is active your muscles are not getting enough oxygen and are, therefore intolerant of excercise. No matter how well the pred are working, the disease is only being masked, not cured. Good luck and welcome to the forum. It's a real lifeline being able to talk to people who understand what you are going through and there always seems to be someone around day or night to support you. Take care, Debbie
Ahh so glad to hear that you are relieved. Now you can breathe easy and get lots of information, support and advice from the more experienced people. They are a great bunch of people and will keep you right. I honestly don't know where I would be without this site. I have learned more here than I would ever learn from a gp or a Reumie (Rheumatologist). So stick around and someone will get to you. If not tonight then tomorrow morning. Good luck Pat
Hello Heyyady, I am thinking the same as Debbie and you have probably pushed yourself into doing too much because you were feeling so much better. I am sure the pain will quickly subside with rest. Diana
Hi and welcome to this great forum. Like the other ladies it has been a wonderful place for information and support. I can't agree more that you need to listen to your body and TAKE IT EASY. No matter how well you feel, if you overdue it you will pay. You are so young that it will probably more difficult for you to do but it is really important.
You didn't mention what dose of pred. you are on but there is lots of info on when and how to begin decreasing. Again you have to be very patient. I'm sure you will be hearing from the very wise and knowledgeable ladies very soon.
Hugs, Diana
That's just it- I am not on a high dose at all- I am on 10 mg a day. My team has decided that starting low is the way to go- and it is effective, so I agree!
Staying down when I finally feel good after 2+ years is really difficult- plus, I have almost 4 year old twins LOL
Welcome and I commend you being able to take care of 4 year old twins. That in itself is a job. Hopefully being young you will get some time when your flares up subsides.
what a relief when its diagnosed and medication helps! Time to enjoy the twins. I'm guessing they are noticing a big difference.
I'm 65. 5mg/day pred. A meagre male. I stop when I'm tired. My nana nap helps.
Otherwise I'm reasonably active. Yesterday's chainsawing means I have a few aches and pains today. But I'll do some more.
In the early days of treatment I found I experimented with what I could and couldn't do.
My very limited experience is that having found a dose at which PMR symptoms are stable it doesn't seem to matter how active I am. My limit is my tiredness. How much of that is PMR and how much my age I haven't a clue. Probably a bit of both. I noticed my energy level started declining around age 50.
I haven't experienced any real "flares". It will take others to describe what that means and what precipitates them.
You are the youngest person on the 3 forums here in the UK! The youngest case reported in the literature was a 24-year-old male runner who ended up in a wheelchair until someone had the idea to try pred - he was back to running in days. Those of us who "work" with the charity and support groups are pretty sure there are a lot of people out there like you who are investigated for the nasty things and then the doctors tend to give up because you are "too young", decide it is fibromyalgia or classify you as "hysterical" or hypochondriac. Just this week someone said "diagnosed with PMR, given amitryptiline, it doesn't help...". Of course it didn't - the mind set amongst doctors can be strange!
I was ignored for a long time as "too young and normal bloods" - that was in my early 50s - but I think the symptoms had been hanging around longer, just not bad enough to make me go to the doctor.
Like the others - I would suspect you probably felt so good you did too much. All the pred does is relieve the inflammation and swelling that lead to the pain. Your muscles remain intolerant of exercise and that is the aspect you must manage yourself - with pacing and rest where you can. Not that there will be much of that with 4-year-old twins! But it is important that you rest where you can and possibly work out a daily routine that allows a rest - on that basis I would recommend a blog called Despite Lupus by a young American woman who runs a business and cares for two little girls. Not that you have anything as nasty as lupus, but the fatigue and flares in it and PMR have some similarities and you are young enough to find a lot of things in common I think. She programmes in a daily rest - whether she feels she needs it or not and that is the crux: it is too late when you have overdone it, you will take longer to get over it than you used to. Anticipating such a problem means you rest for an hour or two now - and as a reward will have the rest of the day feeling good instead of struggling and feeling awful and bad-tempered (fatigue and pain do that however saintly you may be!) And the following day you will be fine.
Google too "the spoon theory" by Christina Miseriando - a parable on how to make the energy you have go round.
And when you have any questions - ask. Someone will have been there.
Where are you from? Wherever it is - I have a favour to ask; can you persuade your medical team to write a report of your case and publish it somehow? I'm fed up with doctors to try to tell anyone under 50 they are "too young" to be considered for PMR and/or GCA! Unusual doesn't mean it doesn't happen - and your medical team is to be commended.
Like all these other ladies, I have found this website an ENORMOUS help! I was only diagnosed (aged 71) 2 weeks ago, but I have been endeavouring to get a diagnosis for 20 years or more! It has been put down to Candida, Chronic Fatigue Syndrome, Depression, Fibromyalgia, Osteo Arthritis - you name it, it has been suggested! Now, two and a half weeks on Pred - and I am feeling better than I have for years. If only I had heard of this condition earlier......!
Thank you for the welcome I am still trying to absorb it all, it's a lot to take in! I was "nicer" to myself today, and even took a nap when my girls did, and am definitely feeling beter this evening!
Also, I am in California