question re blood markers

[powerwalk]

Can I ask a quick question - as we go on the symptoms as opposed to the raised blood markers at times - what happens if you need to change work arrangements - as in having to give up work because of all this. I would certainly hope not to (I'm still working nearly two years into this) - but the fatigue is just killing me. If your blood markers look ok - would they just think you are cured and should be in work?

[PMRpro Ambassador]

If you are taking pred to manage your symptoms - your blood markers SHOULD be normal. That is the point: taking pred relieves the inflammation which causes the symptoms. If there is no inflammation left over the liver doesn't produce the proteins in response and the blood markers remain low.

The fatigue is a part of the underlying autoimmune disorder and not really affected by the pred and fatigue is a part of many illnesses, some a/i, some not, some of which don't create raised blood markers. Examples are fibromyalgia or CFS.

You'll have seen this collection I assume?

healthunlocked.com/pmrgcauk......

all very relevant so have a read if you haven't - and maybe again if you have! They all bear repeating

How anyone manages to work fulltime with PMR is beyond me - especially if it is a "proper" job. I worked with unmanaged PMR but I was freelance and could arrange how and when I worked as well as having no commute.

[powerwalk in reply to PMRpro]

Thank you for that - do you think working fulltime prolongs the illness? Would you have a view on that? I just don't know how much longer I can keep this up - and trust me I already have fibromyalgia too so I know whats like to k eep going - but I just feel all out of fight now.

[PMRpro Ambassador in reply to powerwalk]

I don't see what difference it should make to be honest - unless of course you feel the stress of work is impinging on your immune system and its continuing attack on your body. I worked freelance and we have been retired for nearly 9 years. I developed PMR long before that - and being retired doesn't seem to have made any difference: I still have PMR! The same applies to a lot of people.

I think you have to look at it the other way round - you have fibro and PMR. How does forcing yourself out to work impinge on YOU? Without working full time I have a pretty good quality of life. If I had to drag myself to the workplace every day and by the time I got home at night I was fit for nothing but going to bed then that QOL would soon disappear. I'm old enough not to have to work. We could have continued working until now but chose, in fact, to go early - we have less income but it doesn't matter, life costs less too.

[powerwalk in reply to PMRpro]

Yes - I have no quality of life to be honest. I can 't even stay awake now in the bus in the mornings - I'm so drowsy. Neve mind in the evenings!!! Thank you - I have some thinking to do - or rather its been forced on me I just can't see me carrying on like this. Thank you.

[PMRpro Ambassador in reply to powerwalk]

I can recommend retirement! At the very least - can you go parttime? Or would that be to the detriment of a pension?

[powerwalk in reply to PMRpro]

well there's the question - I was thinking of trying 4 days - but then I was thinking what way that would affect the likes of pension etc., either way I need to do something. This is just un-doable - I keep waiting for something to change - next week I'll feel better - but its not happening!!

[PMRpro Ambassador in reply to powerwalk]

Have you an occupational health department? I know people who retired early on health grounds and it doesn't affect pension calculation. They are on other forums but I'm sure there are people on here too. It isn't easy with various hoops to jump through of course!

[powerwalk in reply to PMRpro]

can well imagine. More stress!!!!! Thank you.

[Hidden in reply to powerwalk]

I think quality of life is the defining issue. I remember dragging myself to work 16hrs a day with travel and spending the rest of time in bed with fibromyalgia/chronic pain etc. Pre PMR . I did try to get work closer to home with no joy. Could you take 3 months off and then see how you manage? Fatigue is a terrible symptom because it defies a lot of management strategies especially when you have to be at a certain place for a certain time and guarantee you can do the role you are employed to do. That increases anxiety and stress and builds on fatigue. So on and so on.

[powerwalk in reply to Hidden]

oh it certainly does - and the stress of trynig to appear "normal" when you're just dying inside. I feel I've run out of reserve - and thats saying a lot for me - I always keep going. Changes to be made I think! thank you.

[SheffieldJane]

If you work for a fairly well established organisation they may allow you to retire on health grounds without disadvantage. That's what I could have done had I still worked for the civil service. It was the best deal you could get. Like PMRPro, I cannot imagine holding down a job with this condition, but many on this forum do just that. I even had to give up voluntary work where I had a lot of autonomy, I just couldn't take the stress anymore, although it was so fulfilling. Stress makes me feel quite acutely ill almost immediately. Unfortunately, with the best will in the world, I was walking into a lion's den of stress. Sometimes you have just got to say " enough"!

[powerwalk]

yes - I find I can't handle stress at all now. I really think thats what caused this thing - had very very severe stress for a long number of years in my job. Very unpleasant boss!!! As I say nothing is changing with me - so can't see me carrying on like this. Thank you.

[Hidden]

If you think about how body deals with stressors it's hardly surprising that we have wonky physiological relations with cortisol and other hormones. I often think that diabetes for me was partially stress based. Constantly in fight or flight. Insomnia..... All the things that push bodily processes to the edge.

[powerwalk]

Yes - if we could turn back time - that constant stress is really so bad - your body cannot possibly keep that up longterm. Unfortunately when you're in the middle of it - it can be hard to change things.

[Kath567]

You certainly aren't alone in such a tough decision. I have come to realize that without my health, nothing else matters. You can get another job, maybe seasonal, part time? But, you need to listen to your body and it's clearly giving you your answer.

I am too struggling as I need the money and benefits, am too young to retire, but if I continue as I was, I will only get worse. I developed autoimmune conditions after a period of severe stress too. I am taking time during this sick leave to come up with better coping skills and see it as important as any prednisone. Just because your markers are low, doesn't mean it can't change overnight.

[Patience47 in reply to Kath567]

Kath567, you are right when you say, "without your health little else matters".

[powerwalk in reply to Kath567]

yes true. Thank you. Now have a whopper of a kidney infection which I am plagued with constantly. Just to add to fatigue. Yes nothing is right at the moment. Thank you for your reply.

[PMRpro Ambassador in reply to powerwalk]

Kidney or bladder infection?

[powerwalk in reply to PMRpro]

kidney I would think - pain all up my back towards the side.

[PMRpro Ambassador in reply to powerwalk]

I asked just because there are a few PMR-related causes of the same sort of symptoms as a UTI.

You HAVE been to the doctor?

[powerwalk in reply to PMRpro]

yes this morning

[Kath567 in reply to PMRpro]

PMRpro Can you please specify what you mean? I have been having unexplained low abdominal pain.

[PMRpro Ambassador in reply to Kath567]

UTIs (urinary tract infections) are always thought of as the cause of cystitis - but there are several other reasons for cystitis including PMR, taking calcium supplements and pred - plus others no doubt. Low abdominal pain can also be a symptom.

If you have low abdominal pain you should get your doctor to check it out. There are other reasons.

[Kath567 in reply to PMRpro]

Thanks so much for the info, I had an ultrasound, urinary cultures, but nothing shows. Interesting about calcium supplements, although I am inclined to think it's PMR related as my inflammatory markers are increasing again.

[PMRpro Ambassador in reply to Kath567]

I find if I take my calcium outside meal times or haven't been drinking enough I have pain around that area and the symptoms of cyctitis: frequency, urgency, discomfort. I assume fine grit is forming if the urine is too concentrated.

But yes - I did have problems for years before pred - must have been the PMR. I think both can lead to irritable bladder syndrome. It's been discussed loads in the past, probably 4 or 5 years ago.

[Kath567 in reply to PMRpro]

If it's not one end, it's the other lol.