Not to bad but not Brill

Hi all, hope you are all doing well.

Yesterday was my 1st day to drop by 1mg of pred down to 19mg per day.

I was really reluctant to do this as I am still not over the last flare. My neck has really been stiff and painful sometimes going down to my shoulders and blades and the tops of my arms, well you get the picture.

I feel ok in myself which has to be a plus.

My diabetes is taking a bashing with the pred though and my BS levels are in double figures. Doc told me last week to expect bad news when I have my hb1ac in 2 weeks and to book in with the diabetic nurse.

I will also be having loads of other bloods done at the same time as the following week is my 1st visit to a rheumy so all results will be there for him/her.

I took my boy Harley (new puppy) for a walk on Saturday and wondering if that was what made my neck flare. I was with my hubby and our other german shepherd, Harley pulled me a little if he was not inline with Millie (other GS) so possibly was the cause. Other than that he is fabby dabby dosey LOL. He has gave me a new reason to get up in the morning at 6am though by 6pm I am well and truly ready for bed. Once he is 100% house trained I will stay in bed later and hubby can send Harley up to me when he goes to work. That way if I struggle to get up he can push me out. :)

Anyway, will see how I go on the 19mg for a couple more days and if no improvement on my neck I will increase back up as the doc has given me permission to do so.

Keep smiling

Sue x

12 Replies

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  • Missed you Sue. The fight goes on. Good luck.

    Pats.

  • Thanks Pats. Struggled to get out of bed this morning but all has eased now apart from my left forearm.for some reason. Took Harley for a 20 min walk last night so possibly it is that as the left hand is used to hold his lead.

    The fight certainly does go on.

    :)

    Sue x

  • Early good morning wishes to you all out there.

    Oh what a day! Firstly yes my early morning post - really strange, I went to bed thinking I was getting a full nights sleep (even dreamt it), but NO the body alarm, which has been active since 13th August when all this started, went off, admitidley today it is abour an hour later, went to bed at 10ish, so not bad 5 hours ish..

    Well back to today - for those who may have read some of my blogs, I have been diagnosed (or not, still being debated), that I have GCA since August, biopsy (inconclusive) etc - commenced on 60mg pred, this was reduced, increased, reduced and now on huge decreasing dose - currently being reduced by 10mg each week!!! and by gosh is that causing problems, but told by rheumy to push through it and put up with it, this is due to side effects of pred in first place. Having huge break through headache - currently on 30mg pred, 120mg dihydrocodene slow release x2 daily, plus loads of RA drugs - MTX injection 20mg weekly etc.

    Through all of this I have continued with full time work - I am 52, married and am a Child Care Social Worker (so as you can imagine quite a busy job). I realised I have been struggling and my GP has been saying I should take time out, but I am pretty stubborn and wanted to keep control of something, can't manage my health, at the moment it seems to manage me (this is not how it usually is - generally I am a person who has RA, not I am have RA, GCA etc oh and by the way I am Hazel!!!!!....). I loath taking steroids, but know there are few alternatives, so my 'control' was working.

    I work in a great team who care, and I mean really care about one another, and unbeknown to me each of them has been expressing to my new Manager about their concern - they have noticed a clear deterioration in my health, my presentation, just in ME. I have been on a 10day intensive training (day 2 on Tues) and had a call from my Manager asking me to see her after the training today.. BOMB SHELL.... she has been 'reflecting' very social work term..., and has spoken with HR etc and has sent me on 'sick' leave. I could work, but only if my GP gives me a letter stating I am 'fit to work' - he is is the one who keeps saying I should be taking time off, the one I keep saying 'I need to keep focused, keep in control' - kinda don't think he would be comfortable sending a letter to the local Social Care stating this.. I feel it has been taken out of my hands..

    How do I feel - so mixed, my feelings, emotions, thoughts are all over the place. There is relief, there is anger, feel low - what am I going to do with all this time... Tired, tearful - oh heck, I really am not able to put into words how I do feel - welling up just typing this.. Would appreciate any thoughts from any of you wonderfully supportive people out there if you have experiened anything like this?? Where is MY control - it feels I don't have any.... Feel really scared, still waiting on MRI's to try to find out why my left side is not working properly, least after the CT I know it's not a tumour (which is what my GP had seriously thought I would have), but he still thinks something is going to show on the MRI - just wish it could be over with, just hate all this not knowing... I don't want to have anything, but an idea of what is casuing so many problems would be good - in all probability it may jusy be my auto ammune system is just very active and working on it's self - have fibrosis of the lung, RA, fibromyalgia, asthma.

    Sorry such a long post, and thank you if you have read it all... Just needed to get some of the thoughts out - it feels quite cathartic - just a little relief..

    Thanks again

    Hazel xx

  • Dear Hazel <br style=""> I can understand how you want to be in control and how that means continuing to go to work and not to go 'on the sick'. But if you can just give yourself permission to have a couple of weeks' sick leave it might make all the difference. That's what Occupational Health said to me when I was really ill with the PMR - that my employers would rather have me off for two weeks than have me crash and go off for six months. That was a light bulb moment for me.

    There's another thing too. You could be doing a favour for all your fellow sufferers who need a) health workers b) employers c) colleagues d)friends and family to understand that GCA and PMR are serious illnesses that have a major impact on people's lives. It's not just a case of take the steroids and get on with it. You are one of thousands of working people who fall ill with GCA or PMR every year, and yet these are still illnesses that 'nobody has heard of'. How can that be?

  • Sounds like the preds are making you moody - this is common - yes you do need time off work. Think of this time as positive - if you do craft work then this can help - be like me get out the dusty old knitting needles - Xmas is coming - get creative it helps. Mood swings are very common but use them to your advantage - sort out cupboards, things like that help. At least you are being investigated and should soon know what is causing your symptoms. Try and be positive - everyone keeps telling me that there is light at the end of the tunnel so hang on in there.

  • Margaret is right - there is definitely light at the end of the tunnel. But we have to help ourselves to reach that goal, and it seems the stress of working is just adding to the problems. I'm sure that the waiting for a positive diagnosis is the worst part. Try not to look at it as "losing control" just a bit life changing at the moment. So give yourself lots of TLC - some exercise such as walking which can release those feel-good endorphins and perhaps meet up with favourite friends for a coffee and a chat. I do hope you get some positive results soon.

  • Hazel, after reading your post I feel I must reply (haven’t written anything before) as the similarities between our two situations are uncanny. I too am in my 50s and have a number of conditions which meant I was considered disabled before I was diagnosed with PMR/GCA three years ago. I too am a social worker, managing a busy child protection team. Like you I have clung to work as the only area of control and sanity in an increasingly out of control personal world.

    Over the last year my health has deteriorated and I am in the never ending cycle so familiar to all-tests/drug changes/side-effects/steroid drops/infections etc. However, I did not stop and listen to my body and the people around me (family, team and colleagues ) when it was clear to see that my coping strategy of “just getting on with it “ was having the opposite outcome and I was sinking fast. I teetered on the brink for several weeks more and then was forced to stop when I could hardly stand up. My brand new GP took one look at me and said I had “hit the wall “ and could expect a long recovery. That was three months ago and I am still off . Like you my emotions have been all over the place as I am facing the possibility that I may not be fit enough to return to the work that has in many ways defined me for years.

    What I have realised is that our serious and complex work needs people who are emotionally available to do justice to the children and families who rely on us . You have been lucky that your manager and colleagues cared enough to act to protect both you and the children you work with and have not driven yourself to the collapse that I did. It sounds like you have a full time job sorting out your current worries –so be kind to yourself and let others look after you for a change.

    C.

  • Hazel - sorry to learn of all your problems.

    When I was first struck down with PMR I was upset because I had to give up my charity fundraising which meant a lot to me however I just did not have the stamina to keep going for long periods. I found the constant lack of sleep at the higher doses really pulled me down and made me very negative. Friends were worried about me as I looked so pale and drawn.

    My elderly Mum gave me some very good advice. She is 95 and severely disabled with OA and in a Nursing Home. Physically she is in a dreadful state but somehow remains cheerful. Her advice was to concentrate on what I could do and not to think about what I could not do.

    Initially I found this hard but my fellow charity workers were great and I now do admin work on my PC for the same charity which gives me a focus and keeps me in touch with the same people. Gradually I have improved enough to return to my embroidery and patchwork. Again my sewing friends have been very good giving me lifts until I was well enough to drive again. I have also tried to think positive and take a long term view and keep telling myself that I will get better one day.

    Now a year later and on a lower dose I am feeling a lot better although I still have some way to go but at least I can do a lot more and am sleeping better.

    I hope that you get a diagnosis soon and start to feel better. Get all of the support you can from friends and family and give yourself lots of TLC. Find what you can to fill your time, anything you fancy - a good book, meet friends, craft work whatever you can manage but also make sure that you have plenty of rest so that your body has a chance to start healing itself.

  • Hi Hazel

    You have so much more wrong with you than I when it comes to the state of your health. I worked on in my care job until I couldn't get out of bed and to be honest it just wasn't worth it. I had made my condition so much worse than if I had stopped earlier. I only have PMR - ONLY! - I feel so weak and crippled some days and I can only imagine how you feel.

    My specialist said he was only happy for me to do "light work". I do as I was told, but I find coping with the side effects of pred as hard as trying to push the PMR back to sleep.

    I miss my old job so much and I really miss the friends I had, but I know I have to be sensible.

    I think that the stress caused to your body when you are continually pushing it to carry on will only worsten all the illnesses you have, so try and accept what your doctors are saying and "let go".

    It won't be for ever, I'm sure. Think of it this way, Hazel, what would you say to anybody else who was in your state of health and failing. Would you really encourage them to keep going as if nothing was wrong with them?

    Pats

  • Hey Hazel and Charlie1 - maybe we should start a sub section of these blogs - couldn't resist saying I was a hospital psychiatric social worker, Mental Health Officer ('preferred social worker' in England, or some similar name) but I retired early to spend time with my husband who was 13 years older than me and I'm so glad I did. There is life after social work. Believe me! So begin to try to appreciate time spent getting yourselves better because you are the best resources in the department I'm sure. And none of us is indispensible; the work will carry on while you cope with the stresses of PMR and it'll be there when you return. You could make a list of all the lovely, educational, or really different things you might do when you retire - its not far off, is it? Recently I got a part in the local panto in December, but stood down before rehearsals began because I got a bit of slipped disc which I blame on steroid - I hauled a suitcase on and off flights and buses for a week away and forgot I had weakened muscles. Felt I couldn't risk anything else happening as the panto is a team effort, but am singing in the back row of the chorus, to the pleasure of my little grandchildren.

    But I know its truly hard to think optimistically when you're full of drugs and pain and feeling rotten. 9/10 months in I am beginning to feel much like my old self again. Still a long way to go, but my thinking is clear, I have motivation after a long time without, am starting to build up weakened muscles after months and months of sleeping on the sofa with the dog during the day. I am thinking of returning to my part time job again. My house is a midden of unsorted paper on the Deep Litter system which I have not dealt with and which I have to tackle.

    Importantly I now have a clear idea of how best to come slowly, slowly down from higher doses of pred, how to eat properly, how to be sensible about activity. I am inclined to forget that PMR is still with me as I improve - do far too much - and end up feeling exhausted, low mood, some pain in arms/shoulders but I know its my fault for opening the door to the tiger's cage.

    You'll derive loadsa sense from this site. I am feeling less dependent on it now. Best of luck to you both and my old friend Pats.

    Janimaths.

  • To everyone who has replied and those who read my writings - a HUGE THANK YOU...

    I have now been off for 2 days and the acceptance is settling in. Went into work today after seeing my GP (more on that later), to drop off my certficate - I was really brave, well I think so, I took in my work laptop, my work mobile and my note books, so I am not tempted to be involved in what is going on daily. I still have access to emails from home, but in that way I can keep in touch with my fantastic friends/colleagues. It was a weight, albeit a very small 1oz weight, but it lifted just a little from my shoulders.

    My Manager and I had a really positive chat - I thanked her for seeing what I didn't want to. She seems to be making an impact within the first month of her start date. She is coming in wit a fresh pair of eyes and can see the team on their knees and is actively going to address it, so in some ways my illness has highlighted a huge problem, which unfortuantely is often endemic in Social Care and the side the public do not see. Working 11/12 hour days, no lunch breaks, often not taking leave and driving to all areas of the Country. Then there is the stress - no I won't get on my chair here to bang the drum - just wish we were not painted so black in the media - especially Eastenders at the moment, we really do not work like that!!!

    Back to the GP - when I went in he looked surprised to see me, not due to visit until next week. Explained my managers view that I needed a letter to say I was fit to work - he just gave me a very wry smile/smurk... then did not say NO, but just, you know those are my thoughts.. and picked up the sick note pad! Agreed to sign me off initially for 2 weeks - but then said it will be for longer, just need to do this slowly, I suggested negotiation, at which point he smiled again (this is unusual, often wonder if he has a sense of humour)..

    That bit over and then - discussed the fact my consultant has contacted the GP - need urine test as appears I have protein in my blood, possible issues with my kidneys all due to the auto immune disease. Early morning sample to be done Monday, so another wait, another possibility! But then looking at what they are testing for it appears it is something called Bence Jones - this is not so good, maybe researching is not the best thing, can be linked to myeloma, although those with auto immune disease can have false positives...

    We then discussed the amount of pain I am still in with headaches and the numbness and loss of sensation in my left side - he did the relflex things and has now decided to refer me to a neurologist.

    I suggested my immune system was having a field day at the moment by just attacking itself - he said that was an understatement - it's having a field day!!! Can't disagree with that. Now to top it all I have further reduced the pred today - now down to 20mg, come on side effects, do your worst!!

    Counting the days now - my hubby and I have booked a little cottage on a farm in North Wales and head off there next Sat - were going to Betws-co-ed, this was planned to be a walking holiday, that's not going to happen, so now am planning a train trip up Snowdon, the Ffestiniogg Railway (apologies I think I have spelt it incorrectly) and a trip to Portmerion, plus rest days.. Lots of home cooking, fresh air, time to chat and just be together..

    Thank you all again for reading, supporting, being there and understanding, and above all for letting me read what happens to you out there, it makes me realise I am not alone and helps put things in persepective, especially Charlie1 - so many similarities - it is a job which can totally consume you..

    Have a happy weekend one and all - I am off to a Food Festival, as long as it is not rained off, I live in the South West near Poole Quay and we have been deluged all day Friday, so fingers crossed it eases off, still raining whilst typing this at 12.30 a.m. - sleep evading me yet again!

    Sweet dreaming

    Hazel x

  • Hi Hazel

    When PMR struck me like a sledgehammer in January, I didn't know if I'd ever get back to work, and spent much time fretting. I came to realise that I needed the time to help myself recover. I'm now on a phased return and improving. Be kind to yourself. I think this is a lesson all those of us with PMR have to learn. It seems to hit people who do too much and get by until something tips the balance.

    Moira

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