Help - I may have PM !! I'm a runner
Posted , 18 users are following.
Hi, Awaiting a blood test, but everything matches and I'm beginning to worry. I'm 59 and a keen, fit runner - i was training for a marathon before the stiffness started in my thighs, hips & shoulders 2 months ago . I have only recently got over a period of extreme health anxiety by running. It literally saved my life, and i have had some amazing achievements for a guy my age winning my 1st ever medals & prizes for my age group. I had very high blood pressure & was overweight & unfit, as well as the anxiety before i started running. I now have perfect BMI, don't drink or smoke, and have healthy veggie diet. If i do have PM, it would be a nightmare for me. I can just about run still after a long warm-up, so should i continue - i can cope with the pain? Also I really don't want to take steroids as the side affects would be devastating for me. I've even heard they destroy your muscles and cause suicidal thoughts, as well as putting up your blood pressure. I fought really hard to get it down without having to take drugs so I'm not doing anything to put it back up! (My dad died of strokes & pulmonary when i was very young, and he was only 37) . can i cope without the steroids - I've heard they only treat symptoms and don't cure? I'm really scared and my health anxiety is coming back. Also how long does PM last if i do have it - NHS says around 2 years - is it possible to shorten this by diet, exercise, physio etc? can't wait to get back to normal!!
1 like, 37 replies
priscilla23271 tonchee
Posted
Hi Tonchee, the good news is that if you do have PMR, your diagnosis will be confirmed if your Doc puts you on an initial high dose of steroids and your pain miraculously goes away in a day or so, sometimes within hours. Steroids don't cure PMR, but they reduce the inflammation it causes so you can go on with your life, albeit in a somewhat more careful manner. I have been on Prednisolone for 2 years and I have no damage to my body apart from cataracts which are a common side effect. Your veggie diet should protect you from weight gain and high blood pressure.
The bad news is although some people seem to manage without steroids, no other magic solution to the pain and lack of movement we experience has been proved to work as well,. I remember saying 'thank goodness' to my GP when she prescribed Prednisolone for me as I had had experience taking it for another autoimmune disease in the past...I saw it as my friend, and it has proved to be. I teach a ceramics class 3 times a week, I drive, walk a little, even with my arthritic knee, and I am 80 next year. You are just a youngster so you have every chance of becoming free of PMR in the future (2 years is a bit optimistic), and lots of people on this forum lead very active lives....I'm sure they will be here soon to share their experiences with you! Good luck...and suicidal thoughts?...never!
EileenH priscilla23271
Posted
I must say this yet again: it is a fallacy that response to pred is confirmation of a diagnosis of PMR. It is just one more piece in the jigsaw. And NOT if it is a high dose - PMR characteristically responds well to a moderate dose, 15-20mg is usual. More than 25mg muddies the water as many other things would also respond well to such a high dose.
priscilla23271 EileenH
Posted
Sorry Eileen, by 'high' I was thinking of the initial dose my GP gave me which was 20 mg daily and she told me if I responded to it in a few days then I could be sure it was PMR, and if not it wasn't. I had blood tests as well which confirmed I had a high level of inflammation. I was just talking from my own experience., not trying to be an expert, just to reassure Tonchee who seemed really worried about what had happened to him.
bob03667 tonchee
Posted
You can learn how to cope with PM and still exercise vigorously - maybe not in marathon competitions but enough to keep fit and get high on endorphins.
When I first had pain in both shoulders which spread to my arms wrists and upper legs, I was having to lift a coffee cup with two hands. Getting in a car was painful as was pulling on a tee shirt or putting on the seat belt in the car.
Although I'd run several half-marathons, I'm now 72 and before PM was doing 4-6 mile walks at a 13-14 minute mile pace. I was playing golf 3-4 times a week and an hour upper body workout 3 times a week.
When they determined it was PM, I was devastated thinking I'd never feel normal again. But I'm now 8 months into it and back to 2-3 mile walks and playing golf 2-3 times a week - and playing as well as I have ever played.
This discussion group has been a godsend with wonderful people sharing their experiences. One thing to understand from the beginning - everyone is different - and especially the amount of prednisone that you can eventually reduce to without doing long-term damage to your bone density or other adverse side effects.
Most important, find a good rheumatologist and particularly one who is athletically inclined.
p.s. I'm also on BP meds for high blood pressure and a statin for elevated cholesterol.
Heron82 tonchee
Posted
Hi Tonchee,
don't worry life does return to normal on the treatment. I too was a healthy 59 yr old when I was diagnosed. I have had to make some adjustments, but am coping well and leading an active life. I eat a well balanced healthy diet and have not gained any weight since beginning the steroid. I've had no muscle wasting or other side effects - other than not wanting to take the steroids, but they are needed as they control the pain and stiffness and give you your life back.
This site is wonderful as it gives great support and very helpful advice (Eileen is the guru). Stay strong, go with the flow, get on treatment to avoid the pain and discomfort and use this site as well as your doctor for advice and support.
So far, I've been 20 months on this patient journey, I can get down to 5mg per day and no further, but I'll keep trying as one day all shall be well.
Best wishes
tonchee Heron82
Posted
Hi HERRON,I have now been diagnosed with CMR but have decided to avoid pred for now. Everyone is different and for me i know it is the right thing. Despite positive ESR and CR my stiffness is quite mild and i can still run without pain once i have warmed up. I do get tired quicker but ive read that still happens with pred. I don't want to get stuck on 5mg for years like many on here. take care
Michdonn tonchee
Posted
Tonchee, I know we are all different, but PMR inflammation can get out of control. I was a active cyclist and skier and ended up in a wheelchair. Do yourself a big favor don't let the inflammation get ahead of you. Good luck on your PMR journey.
ptolemy tonchee
Posted
Remember if you do have PMR you are ill and just by pretending you are OK will not help. As Eileen says you are opening yourself up to getting GCA which is not to be sneezed at and then you will need pred to stop blindness.
tonchee Michdonn
Posted
I'm now getting flu symtoms - shivering etc . IF i take the pred, will this go away too? Hope so because i don't fancy feeling like this for 6 years!
tonchee ptolemy
Posted
Thanks everyone - i've never had much mire than a cold before, so this has hit me like a truck! Guess i'm in grief for my lost health and also in denial/anger. an absplute nightmare - my whole social life and being is competive running.
EileenH tonchee
Posted
Bereavement counselling may be helpful - and I am not being funny.
Whether the pred will deal with the shivering remains to be seen but fever is common with GCA. You need medical advice and to accept what is advised by your doctors.
tonchee EileenH
Posted
Been back to the Docs this morning as flu symtoms got worse Dr thinks i may have Lymes disease as well - i got a tick bite month after the stiff legs started . im on antibiotics 3 weeks then blood test , then assess if i need to go on pred providing Lymes has gone? cant go on pred with Lymes as will run riot!!!! fun times indeed. 😃
tonchee
Posted
have a red rash around tick bite on my back (couldnt see it myself) not sure what happens if i get GCa before the Lymes has gone? only slight headache at moment and jaw Ok
tonchee
Posted
Guess someone up there is out to get me? I had a bowel cancer scare last year which took 3 months of pain and worry to resolve - severe diverticulitis apparently? ps have heard pred can cause perforations in that too by the way! 😃
ptolemy tonchee
Posted
If you take a coated tablet or even an uncoated tablet with a PPI you should be OK. I am sure your doctor will check though.
Anhaga tonchee
Posted
Always have your pred with food. A little yoghurt goes a long way towards protecting your stomach and gut.
Anhaga tonchee
Posted
Hopefully the treatment for Lyme will help you feel better, even if you still need pred after the Lyme treatment is done. It might take a lot longer than three weeks, though, mightn't it? Where do you live? Where I am, Nova Scotia, the last few years we've become one of the danger areas for picking up this disease, unheard of not that many years ago. 😦
EileenH tonchee
Posted
The most recent thought is not that the pred CAUSES the perforations but that it masks the symptoms by reducing the inflammation until it is severe - which means much more careful monitoring of things and a low threshold for taking it seriously is required.
tonchee Anhaga
Posted
Hi, I'm from UK near Wales. My modesty cost me dear - i left the trail to go to the 'bathroom' after a run. feel like i have the flu and are panicking as i've felt like this for more than a few days before don't think i could cope with being ill for months. really am despairing. 😦
Anhaga tonchee
Posted
When I feel sick, which admittedly is not often and here I am touching wood, I try to sleep. Sometimes if I am up to it I'll read or listen to the radio or watch tv - but nothing which will upset me. It's a defensive mechanism. We are animals, after all, and a sick animal will curl up in a ball in a quiet place and sleep until it feels better.
Don't forget to stay hydrated, though.
This too shall pass. Hugs. 🤗
tonchee Anhaga
Posted
Thanks so much for your kind help and reassurance. I do feel much better today. Not sure if i do actually have pmr , Lyme or both? Still stiff, but less flu-type feelings thankfully. I assume your pmr sickness comes and goes from what you say? good advice anyhow. hugs and take care,
Michdonn tonchee
Posted
Tonchee, my PMR is funny if I am sit resting I have little to no pain. When I try to stand and move I am very stiff, as I move against that stiffness the pain is excruciating. I cannot walk sometimes. I normally can stand pain pretty good; skied this year with cracked or broken ribs. PMR when the inflammation is out of control stops me cold. Good luck in finding your answer. Stay positive, try to be active and smile. 🙂
EileenH Michdonn
Posted
Are you sure it is the PMR and no an add-on????????
Anhaga tonchee
Posted
I have never felt "sick" as such from PMR. Guess I'm lucky that way. Some people do describe feeling "fluey". But I have been sick with other things, not least of which was a nasty tummy bug dear hubby shared with me a couple of years ago. I never put back the weight I lost in those 36 or so hours, and I could ill afford to lose those pounds. And for the duration I just slept in a chair and didn't move unless I had to!