Forgot pred!

It took me about 3 hours to get the negative effects of missing Pred.  That's why I was over confident.  It "kicked" me then however.  Next time I will take dose as soos as I realise I've missed one.

At the lower dosage levels, say 5mg and below, I prefer to take the pred around dinner time.

I have no pmr symptoms during the noght this way, and wake to a pain-free muscular-skeleton.:-)

Lately I have taken it a couple of hours early, and thus have more energy and freedom from pains when I go out for my evening jog or mountainbike ride.

Jog? Cycle!! Sounds far too daunting for me yet! 🤔

Now you sound like my older son... He said that he does not like biking, jogging, swimming or anything that rhymes with it   Actually any moderate activities promotes blood flow and reduces PMR symptoms... You should try it if you can.

Daisy64, I must agree dan38655's idea of staying active. I no longer jog and never rode a mountain bike. I love my road bike, currently my balance does not allow me ride. So I walk twice a day, in the morning swinging weights. But always aware of how I feel trying to listen to my body, if I have any stiffness or pain, slow or rest. Plus diet and supplements that I hope will help me with my inflammation. Get active, think positive with a smile on your face. 🙂

"You should try it if you can"

Please guys - most people DO do what they can. I can't jog or cycle and I can't even walk swinging weights - and that isn't "don't want to" that is "can't". Medically can't. Physiotherapist forbidden can't.

It isn't as simple as people having "just" PMR - you must bear that in mind. And many people told by others on the forums who are able that they can do it if they want to enough are already upset and depressed enough. Please don't add to it.

I wholeheartedly agree, Eileen. I can do more now but still finding it tiring if I overdo it so have not yet started swimming. I have too much on my plate just now and that is enough. We are all different and were all different before we had PMR so how can we do the same as others?  We are at different stages and some are so much worse than others. I had ME many years ago and what I found worked for me was not necessarily going to work for others. I think we need to respect each other's situation and be mindful that whilst appreciating others' information what  works  for one does not always follow for another. 

Did anything work for your ME? I just wanted to die in a corner!!!!

I was the same but continued to work and every set of stairs when I did home visits was liking climbing a mountain. I was fit for nothing when I got home. I took cod liver oil capsules and ate lots of oily fish. I went off meat. On of the consultants  at Ninewells (with whom I worked) took bloods as she was doing dome research and was interested in why I eventually improved when others hadn't. I think fish oils are now recommended but I'm not sure of the latest developments. My body just couldn't take meat.  Strange. It took a long time to feel anywhere near normal and if I overdid It I felt whacked again. 

WOW! Such a hostile response to my comment. You have twisted the very gentle and polite sentence "You should try it if you can" and change my intention completely.  The clue is in "IF you can" .  I used to run a lot, but cant any more. Should I get depressed if someone here talks about jogging? Because I don't. I am happy that they can, I may envy them, but I certainly don't get depressed. If anything, it would maybe motivate me to try. But we can only speak about our own experience. When you recommended pool workout a while ago, have you thought that you might depress people who are afraid of water in general?

I think it is given that people participate in this voluntary forum and try to help. It is wrong to promote idea that with PMR you can't do any activity. in fact ANY activity helps, and that is the intention of the message I typed that you responded to.

There is a research out there that points out that RATIO between omega 6 ( meat) and omega3 (fish oil) is important. While omega 6 acts as inflammatory substance, the omega 3 is exactly the opposite.

N/W just looked at me - by the time I got to see a doctor there the liver values that were high had fallen again - and said "nothing we can do, must have been a virus".

I couldn't stand for more than 5 minutes without collapsing. I ran a teaching lab at Bell St - couldn't work! Lost a load of weight though!!! That was in my mid-20s so they didn't even recognise it as a disease then - but they have a specialist unit now don't they?

That would possibly account for my body craving fish oil. I just went off meat completely. 

It wasn't hostile and it wasn't aimed at just you but there was no way of addressing it at more than one person and getting it into the right place. Someone agreed with it fast enough.

I, of all people, do not promote the idea you can't do anything with PMR - ask Michdonn who was doing not a lot until I told him to try walking. However, when you have replied to as many people as I have who have overdone it and ended up in a real mess you'll see where I am coming from. 

I wrote a lengthy reply and it vanished. I was involved at the beginning of a support group which was in Tayside. I was also fortunate enough to at least have been diagnosed with Coxsackie B which accounted for the ME. One of the young medics with whom I worked was very concerned about me continuing to work as my colour would turn grey/green and I'd have to sit down. I was able to pace myself but struggled greatly and the palpitations were unnerving. I was in my late 30s and didn't think I'd reach 40. It was awful. It took a few years to feel normal again. One of the staff at N/W who also had ME had to give up work and became involved in the research side. He certainly did a lot to get the right people on board. I still get the magazine sent but have not been involved for some time now. I think you are correct about the unit. There is certainly a lot of ongoing research. I also lost a lot of weight but a big problem was the brain fog. I had to write everything down and sometimes couldn't remember simple words. There are a number of similarities to PMR.

Vance Spence?

I am sure that it was the precursor to PMR - and in the middle I had something that responded to HRT. I stopped the HRT and PMR appeared a relatively short time later, also with raised liver values. I do sometimes wonder if trying HRT again would help - but I can't be bothered at my age 

That's exactly who I meant. Did you know him? I have wondered if there is a connection with PMR

My husband did his PhD under him and when Vance had to give up work we returned from Germany for OH to take over running the Vascular Lab. He also worked with Faisel, Neil and David - who was his PhD student. 

Life is full of such amazing coincidences. Are you in touch with Vance? I didn't realise your OH took over the Vascular Lab. Are you still planning a trip to Scotland this month? 

EileenH, I understand completely, you know I was sitting down feeling depressed and you did get me walking. Those first days were terrible. I used a cane, could not move my right leg without the cane, stiff and very painful. Little by little I increased my distance with a number of rests. So I now am a firm believer that you must do what you can to stay active. And I thank you everyday. Moving forward on my journey with a smile on my face

🙂

pm'd you - you'll see why

 

Thank you please excuse my ignorance. I'm a bit new to this!! Been in so much pain I can barely drag the dog for a walk .... But I do x3 daily not massive walks but I keep going. However....today is day 8 of Pred, I am alot more comfortable. Fingers crossed its working ...so today yes I've felt like smiling for the first time in a while.

Good for you Daisy64, I really do believe that the smile helps. 🙂🙂