Stress related relapse - don't know what to do

[EscapedtoWales]

Hi everyone

Been reducing without issue down to 6mg. Been under a lot of stress with recent house move and then new management at work have resulted in huge amount of stress/anxiety. Last week my shoulders and groin became stiff and started to hurt. When we moved in August new GP practice refused to refer me to a new consultant even though I was under a consultant where I had moved from. After a few day with no improvement I had no choice but to ring new GP to see if I should increase my steroids and all got on the end of the phone was 'umming and ahhing' - when I sad shall I just see how I go she said 'that's a good idea'. Pain and stiffness just got worse so on Saturday I increased from 6mg to 7mg. This hasn't given me any relief and I wondered if I should increase again. I have no faith in our new GP practice and with no consultant I just don't know what to do. I would so appreciate your advice. Thank you Lynne

[DorsetLady PMRGCAuk volunteer]

Usual advice from Rheumies is to go up to a dose which is 5mg above the dose you last felt okay at for a short sharp blast of Pred. Do that for 5-7 days to clear out the built up inflammation- and then you should be able to drop back down to previous (good) level without a problem.

So if you were previously okay at 7mg, then a few days at 12mg and providing it’s sorts the problem, back down to 7mg. You might find going up to 10mg sorts it, but it’s entirely up to you.

However, if it were me, provided it was sorted, and I got back down to 7mg successfully I’d stay at that dose until after Christmas before considering a reduction.

The level you are at can be problematic with adrenal glands coming back into play, add in situation at home and work, the winter weather and Christmas - it’s not a good time to reduce. When I had GCA I always put my reductions on hold for about 6 weeks over this period.

[EscapedtoWales in reply to DorsetLady]

Thank you so much DorsetLady - that all makes perfect sense. I have been feeling so alone with all this and not knowing where to turn. It was funny because my reduction has been going so well I had almost forgotten about this group. Thank goodness you are here.

[EscapedtoWales in reply to DorsetLady]

Hi Dorset Lady. I wondered if you could offer any further advice? I increased the 5mg as you suggested and although there's an improvement from when I first posted I still have pain in shoulders and hips. I was seeing the GP about something else and asked their advice and they said just stay on the extra 5mg. I have done 17 days now and just feel like I am not 'knocking the inflammation on it's head'. Do you think I should increase again? Thank you.

[DorsetLady PMRGCAuk volunteer in reply to EscapedtoWales]

Hi,

Sorry to hear that, so are you still at 12mg? If so and things haven’t got any better, then are you sure you aren’t trying to do too much in the run up to Christmas?

If not, then maybe a week at 15mg is need, and if that works then a drop back down to 12mg.

If that doesn’t work, then after Christmas you need to see GP again, and if possible get bloods tested to see if inflammation are high.

Do hope you soon feel better.

[EscapedtoWales in reply to DorsetLady]

Yes still at 12mg. It has been a tough week with a close friend dying and pre-Christmas visitors - and there has been a definite worsening of the pain over the last week. So maybe the stress and the additional work is the cause - why hadn't I put the two together? Think I will slow down and just see how I go and if things don't improve I will increase again.

I really value your advice as I have little faith in our new GP surgery. Luckily when I did see the GP I managed to get them to refer me to a rheumy, which a previous GP had denied me.

Thanks again. Wishing you a very merry Christmas - or as they say here in Wales Nadolig Llawen.

[DorsetLady PMRGCAuk volunteer in reply to EscapedtoWales]

Well I’m not surprised following the week you’ve had - one or other of the situations would have been stressful enough, but both together - a double whammy.

Try and have as restful time as you can - not easy this time year - no matter how lovely Christmas is, everything is out your normal routine.

Take care, and see how things are in a couple of weeks....but you know what to do if things don’t improve, even a few days at a high dose sometimes works.

[Hidden]

I agree with Dorset lady and have done the quick blast of an extra 5mg for a week then dropped to 1mg above what I was at when flare occurred . Stress is a factor in relapses/flare for me and its not good for the healthy body nevermind a pmr body . I hope you feel bettersoon. The Dr's reaction probably due to a lack of knowledge about pmr so after Xmas when you feel better discuss it then. 🌻

[EscapedtoWales in reply to Hidden]

Thanks Poopadoops - I feel so much better now I have a plan. I had almost forgotten what is was like to have PMR symptoms but they just appeared overnight and it was like I had one back 2 years - it really brought home to me how much stress I have been under and the impact that has had on my poor body.

[Hidden in reply to EscapedtoWales]

It is scary isn't it.

[SheffieldJane]

Hi there. I am sorry that you’ve had two massive stressors in your life, moving home and new management causing huge stress at work. Is there anyone to can talk to about the impact changes are having on you at work! It can’t be what they intend surely?

I agree with the good advice about dosing that you have had already. I would be keen to find a good Rheumatologist, your doctor seems very unsure of our conditions.

[EscapedtoWales in reply to SheffieldJane]

Hi Sheffield Jane. Unfortunately I think the new 'hatchet' manager wants me gone - I moved to Wales from Yorkshire but agreed with old management (verbally) to continue working from home in Wales. New manager not happy about this - despite the fact I can do the job just as well. I think after the stress of the move the work situation was the proverbial straw. I have also been stressed about the new GP practice on so many levels including the point blank refusal to refer me to a rheumy - yet they obviously don't know how to manage this flare. We are in a rural location and unfortunately there's little option to change GPs. I will go back when everything has calmed down and discuss a referral again. Thanks for your reply

[SheffieldJane in reply to EscapedtoWales]

If you think that there is an attempt to subject you to “ constructive dismissal” and alter your working pattern “ Equalities Act 2010” you do need to make a note of everything that is said and done to you. These actions by your “ hatchet manager” are contrary to the law and you may find yourself fighting a legal case. Ensure that you know your rights - Citizens Advice or ACAS should be able to advise. There is also the provision under the Equalities Act for people covered by Disability Rights. They may find themselves on very shaky ground. Working from home is becoming more and more usual. My OH manages an organisation in London and lives in Sheffield.

I feel very sorry for you being subjected to this whilst ill, not to mention your GP’s attitude. I hope you have taken DorsetLady’s advice about your current dosing and are feeling better.

[EscapedtoWales in reply to SheffieldJane]

I increased pred yesterday and feel so much better - thankfully. Yes I have been wondering about my rights - our Union isn't great. Unfortunately the agreement for me to work in Wales and come up monthly was a verbal agreement with previous manager. But thank you for the advice - it's definitely worthwhile me looking for support.

[SheffieldJane in reply to EscapedtoWales]

Working a certain pattern over a period of time establishes a contract. My knowledge of Employment Law is a bit dusty now, but I would urge you to take some qualified advice. Remember to date and document everything. The Union may be able to point you towards some useful advice even if their powers have been considerably weakened. If you are friendly with your previous manager, perhaps they can provide you with a note of their decision to allow remote working and the thinking behind it. Some lawyers will work for you pro bono. Without a fee unless you win compensation when they will require a percentage. I hope it doesn’t come to that, but as a good brownie does, you need to “ be prepared”.

Best wishes! ( I am ex HR - reputable employers do not behave like this).

[EscapedtoWales in reply to SheffieldJane]

Thanks SheffieldJane. I am hoping things will get resolved amicably. We will see.

[Constance13]

Hi AtR! So you Did find your new home? Is it in the area you were looking for? You'll have to change your forum name now!😂😂

Don't forget - you never need to feel alone - there is always someone on the forum, and, as you know, we've all been where you are with this pesky illness.

Kindest regards from Constance. 🎄🍾🍸

[EscapedtoWales]

You remembered! Yes we found our dream home but unfortunately the path to buying it was so stressful - including being effectively homeless after selling our house in Yorkshire. But now it's ours and I can't believe how lucky we are. And you are right I will have to change name to 'escaped to Wales' or something like that - ha ha. I am just so glad the Forum is here - when the surgery won't refer you to a rheumy but don't have the knowledge to support you where on earth would you go for help?

[PMRpro Ambassador]

I fear you are meeting the downsides of a move to Wales and their NHS. It can be a whole different world. Where in Wales are you?

[EscapedtoWales in reply to PMRpro]

I am in Mid Wales (Powys). Husband is a social worker and the whole health and social care system seems to be broken. Main issue seems to be lack of suitably qualified people to fill vacant posts - only those looking forward to a quieter life and eventual retirement seem to want to move here (so I have been told) so that fits us - ha ha! Then there's the huge distances you need to travel to access healthcare -neighbour is waiting for a heart surgery and he has to go to Stoke!

[PMRpro Ambassador in reply to EscapedtoWales]

At least he is being allowed to GO to Stoke - many in Wales struggle to get specialist treatment in Wales and are refused funding to go somewhere else. I keep a list of places in the UK we couldn't consider if we returned, Wales is on it! I grew up in the Marches, shopped in Knighton, wouldn't live there again though.

Have you seen the xmas ad from the Rhayader ironmongers?

[EscapedtoWales in reply to PMRpro]

I have seen the Ad - it's been a big feature on BBC Wales. - really lovely and an antidote to the mass commercialism of Christmas.

[PMRpro Ambassador in reply to EscapedtoWales]

Isn't it! Well done both dad and son I say ...