I'm going to stop referring to PMR/GCA as a disease. It is a condition which presents itself to us in various states depending on our circumstances and current level of health. There must be reasons why it changes so often and swings back and forth. Sometimes we have a good idea and can trim our activity to reduce bad effects and sometimes whatever we do make little difference. It really does take us where it pleases and refuses to obey our will. We are used to upping our medication when we feel a flare or even anticipate one and try to prevent it. Sometimes we can't tell if it is a flare or a reaction to the drugs. I know from my own experience; which by the way will be different from yours but have some similar states, that my physical condition has been seriously diminished by this and the drugs. This is debilitating and further limits what can be achieved causing frustration. I have a much better idea of this condition now thanks to everyone on here and some hope that I have come to an understanding of it. I am trying to reduce for the third time and hopefully will get to a more acceptable level of medication whereby I will be able to start thinking of rebuilding some of what I have lost. Well, that is the aim anyway. We'll see how it turns out now that I am a year into the condition.
Not a Disease but a State/Condition.: I'm going to... - PMRGCAuk
Not a Disease but a State/Condition.
I can see where you’re coming from cycli, I think we all try to discover a pattern or pathway for this condition to help make sense of it, what it is & where it’s going. I for one clung on to my previous ‘self’ i.e. the fit person who could go all day doing any job, any time. However after a while I realised that pmr is truly in charge and with acceptance I became better able to self manage & take small steps forward in getting back to some fitness & my old life. I’m not there yet by any means, what I’ve lost is gone but I’m rebuilding & like you I’m sure we’ll get there eventually. Keep positive!
I feel similar. For a long time I tried to continue as normal with work, gym, social life etc. Unfortunately, PMR had a louder voice than me (unbelievable, many would say!😄) and I had to learn to adapt.
As many on here will already know, I'm now medically retired, and as upsetting as I found this, I now am managing my condition far more effectively.
I have all the time I need to focus on myself and my own health & well-being and my general overall health has definitely benefited.
Of course PMR can (and does) throw a curveball from time to time... almost like the PMR is reminding us who's in charge!..... but the more knowledge we have, the more successful we'll be at managing our symptoms and side effects and the outcomes will hopefully be more positive.
I may not be capable of engaging in all the same activities as previously but there's still lots I can do and I always enjoy my daily visit to the gym.
If nothing else, I'm maintaining a basic level of fitness that's within my capabilities and offers some positive results at a time when any small improvement counts!
Hi,Yes. Interesting that you refer to pmr as a condition, because that is exactly what I do, although I sometimes feel it is an affliction!
I guess that is because, a lot of the time, I don’t actually feel I’ll (like in the sense of a nasty cold).
However, I do understand that, for many on the Forum, pmr is very much an illness, and they do feel rotten.
Paddy
hi Charlie1boy. It was my comment not Kendrew's. I recognise it makes us ill, But I don't think of it as a disease. There are too many variables we have to accommodate and adjust to.
ok, but, whilst in no way wishing to be pedantic, you will see in Kendrew's reply, she also refers to pmr as a condition!
my bad, you are correct. Goes to show how we have that connection and thinking but have to adjust to differences we each experience.
I'm glad that others see it similarly as it helps me to think I may be on the right lines with thinking about it. It tends to make us very focused on ourselves and we have to be careful that we don't exclude people as a result. Admittedly it does highlight those we would prefer not to engage with and they show their true colours, but in general it's important to still try and think of others when this blooming condition allows. One silver lining is that it makes us understand in a really visceral way just how much others may be feeling with their conditions and not to judge others too harshly. Many are suffering from similar problems and the cause is not always visible like with us.
It is almost as if you have written this for me. This is exactly how I feel 2 years down the road and still learning about this condition.
What I find the most difficult is explaining to friends why I sometimes can not do the things we did in the past.
Partner is fine and fully understands but those others around me do not seem to accept my condition....guess I just don't need these folk around me.
Very well explained, that is exactly how I feel. I am retired now and not having the stress of not having to make myself to to work and not letting people down. I much more accepting of my limitations, but agin surprised set such an impact PMR has when it wants to.
Just to add my two pennyworth.
The terms Illness and Disease are often used interchangeably. But they are two different terms that can not always be used in the same context.
So, what is the difference between an illness and a disease?
The difference between an illness and a disease lies in the fact that illness is a feeling of being unwell, with or without the presence of a disease whereas a disease is a diagnosable condition characterized by an abnormal state of the body.
Hence, contrary to the popular misconception, there is no specific correlation between illness and disease. An illness may or may not be caused by a disease and a disease may or may not cause illness.
Apologies, just realised the above is illness and disease not condition. The link below gives better definitions.
healthwriterhub.com/disease...
That's fine Bcol. No problem as I often post to get ideas and peoples thinking. after all, no one has all the information. There is no test that specifically isolates PMR and as such can only be diagnosed by inference, i.e. the symptoms, which vary in location and person. So more a condition identifiable by non specific means. We can be ill at varying degrees by almost anything.
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