Urgently Requesting Help & Support.: Dear Pmr... - PMRGCAuk

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Urgently Requesting Help & Support.


Dear Pmr sufferers,

I am in shock as I heard that my 53 yr old very fit husband tragically died yesterday. I suffer from Pmr and the shock seems to much to bear. We also lost our beloved pet therapy dog last week.

We also have an autistic foster daughter and son. I know my Pmr is going to flare up and I need help and advice as to how I cope with it (should I put up my steroids - I am currently on 10mg after reducing from 20 these past 8months). My heart has been thumping all night and I just need to get through the all the horrible things the next few weeks is going to bring. I need to be strong for my son and foster daughter as they can't cope with any sort of trauma and they rely on me.

I would be grateful dear people for anybody's advice as I can't think straight at the moment and feel lost!

30 Replies


I am so sorry for your lose

My prays and thoughts are with you

I can not advise you others with more experience will do that .

But I just wanted you to know we will all be sending lots of love

during this difficult time.

Stay strong you will get through this but please take care of yourself as well.


As Rose54 said, I am so sorry for your loss, and the pain and suffering it has brought on top of your PMR. I also can't comment on your question as I have RA and GCA, but I'm sure you will get some good advice from others on the Forum. Just try to remember we are all here, thinking of you, and you wishing you well during this very sad time.

CelticPMRGCAuk volunteer

Dear Moonmaiden

I am so very sorry to hear about the loss of your husband - what a terrible shock at any time but especially when happening so suddenly. I feel for you but only someone who has been where you are right now can truly understand how you are feeling, and I know those contributors here will be along here to help guide you through this difficult time. Although it sounds as though you are obviously used to being a wonderful carer and a giver, helping others, you cannot manage this on your own, and you shouldn't even try - you now need help and support. My dearest friend for more than 50 years lost her husband very suddenly and unexpectedly too several years ago now. They were unable to have children so she was totally alone but for her friends. She sought bereavement counselling and has always said how the lovely counsellor, together with our help, guided her through the worst days and the grief. She is now in a very happy place again. Please do seek help from your GP in the first instance - meanwhile we are always here whenever you feel in need of a chat, albeit virtually. Meanwhile, roughly whereabouts in the UK are you - there might be a PMR support group near you to at least help in that direction too? Increasing from 10mg for a while to help prevent the shock and stress stirring up any PMR inflammation sounds a wise move, but, here again, do seek an answer from your GP, referring you to a rheumatologist if necessary. I do hope that all the replies you are sure to receive from the lovely people on this site will go a little way to comforting you and supporting you in your grief. You and your children are in my thoughts and will be in my prayers tonight.

Moonmaiden1 in reply to Celtic

Thank you dear people. I live in Dorset.

Dear Moonmaiden, I am so sorry for your loss, especially with it happening so unexpectedly. As Celtic says you should not even try to cope with this alone, do seek the help of your GP for advice. I'm sure he will be only too willing to increase the steroids to get you over this difficult time. I do feel for you, but do not pretend to understand fully, as only someone who has already been there would understand. I hope you take some comfort from all the support that I'm sure you will receive from others o this site. Meantime my thoughts and prayers are with you st this difficult time. Take care, and do seek support from GP, friends and family around you xx

Thank you for your advice...I really am greatful x

DorsetLadyPMRGCAuk volunteer

Hi moonmaiden,

So sorry for your loss, and can empathise completely with you.

Lost my husband two and a half years ago, and although we knew he had limited time, when the end came it was a lot quicker than we had anticipated. I know I was extremely lucky in that we had time to say our goodbyes, but know of friends who have lost their spouses unexpectantly and how devastating that can be.

As others have said you need help from professionals as well as friends at this time. Take any help that is offered by your GP and other agencies, you may find bereavement counselling helpful in your instance - I felt I didn't need it but my circumstances were different, and I had a lot of help before the event, and knew I could cope with life afterwards.

You may feel you need to increase your Pred for a few weeks to get you through, but you also need help with your foster children, because you still need to take some time out for you.

As the name implies, I live in Dorset as well - there is no organised group, but a few of us from the Weymouth/Portland area have just started to meet up occasionally for an informal chat. Once you've got through the difficult initial times, you would be very welcome to join us, if you feel it would help, and you're within reasonable travelling distance.

My thoughts are with you, and you will get through this, although some days you won't think so it does get easier.

As my husband used to say - death is like a wound - at first it hurts like hell and very raw, in time it heals over, but there is always a scar there to remind of what was.

There is such a big hole in my heart. I am very grateful for your advice. Thank you x

Nannie-C in reply to DorsetLady

Very wise words Dorset Lady x

I can only add my deepest sympathies for you at this enormously sad and difficult time. It is likely that you will be in absolute shock for a while, especially with so much to think about and organise- the shock state helps us to deal with those things. Then, you are likely to find yourself having lots of mixed feelings. Often this is the time when bereavement counselling can be very useful. CRUSE is a good organisation to contact for that.

Be as kind to yourself as you can- not expecting too much of yourself. All you need to do is get through- one step at a time.

I agree that it is a good idea to talk to your GP about steroid dosage, but you may already know how to titrate your dose to how you are feeling.

Take care and take all the help that you can get.

Moonmaiden1 in reply to suzy1959

Thank you for your support. It means a lot. x


Oh Moonmaiden - there is nothing I can say to help at all. What an awful thing to happen - losing your partner is always bad, suddenly and unexpectedly is even worse.

I can only add to what the others have said - you need counselling to help you through this now and afterwards too. And you need to have someone around to help you and the children - and that is going to be difficult isn't it?

You may need a bit more pred but this is something that you need to discuss with your doctor - you are on enough pred for your adrenal glands to maybe not respond properly to the stress but I don't know how that could affect you. Certainly if you have any signs of an adrenal crisis or feel really unwell in any way don't hesitate to call 999 and tell them how you feel and what has happened and that you are on pred.

"In acute adrenal failure (addisonian crisis), the signs and symptoms may also include:

Pain in your lower back, abdomen or legs.

Severe vomiting and diarrhea, leading to dehydration.

Low blood pressure.

Loss of consciousness.

High potassium (hyperkalemia) and low sodium (hyponatremia)"

Moonmaiden1 in reply to PMRpro

I can see that I'm teetering on an edge. My prayers are for strength.

Thank you for your support....it means a lot! x

Thank you all for your advice. No one really knows how suffering from Pmr truly affects us except your good selves. I had to see my husband today, but have to wait for the coroner to decide further action. I really struggled to breathe and felt like someone had pulled out of my body, every ounce of energy that I possessed and, for a short time felt quite ill.

I did try ringing my Gp for advice this morning, but the practice was closed.

I am extremely grateful to you all for your support and understanding ....it has given me great comfort to know that you are out there. Thank you so much.

PMRproAmbassador in reply to Moonmaiden1

If you are in the UK you can call 111, explain the situation and ask to speak to a doctor (or nurse) for advice, medically qualified, not the call handler. Even though the practice is closed there is emergency medical care available 24/7 and there always has been.

Even during a "doctor's strike", so far the same number of doctors have been available for emergency care as normal, it is only routine, pre-planned stuff that has been postponed. Hunt's insinuations are lies, to put none too fine a point on it.

Dear Moonmaiden so sorry to hear of your husbands death. Such a shock for you. I agree with the others. You should not and possibly cannot cope alone with this. Please see your GP for help. But also remember we are here, we understand your illness and hopefully provide you with some comfort and support. X

Moonmaiden, I can't add further advice to that already given, I just want you to know that I'm thinking about you and hope that all the love sent to you through the group helps you a bit to cope. As others have said we are here for you x

Hello my dear,

My thoughts and prayers are with you at this time.

See your doctor. He will be able to help.

God bless



You are in my thoughts and prayers right now. Do you have anyone in your family or a close friend who can help you with your children? Or is there a respite care that could assist you with the children.

I send my love to you, dear one, that the Lord will surround you with His Love and send you wonderful people to help you during this devastating time. We are all here for you.

Like others can't offer any more advice. Think you have had really good advice given. Just to assure you of thoughts and prayers at what must be a really difficult time for you. I do hope you now know that you are not alone in this and will be able to seek the help you need and know that you can also post anytime and know that folk take the time and trouble to help and support you. Very best wishes.

Dear Moonmaiden, I do hope you have someone near you that can help you and the family through this. Talk to them, talk to your doctor , accept any offers that come your way. You are in my thoughts and although I can hardly comprehend what you are feeling , please feel the support coming from your friends in this group. Keep coming back and talking it through and know we are here for you. x

Dear moonmaiden, I cannot offer any advise but I can offer you my thoughts and prayers. I simply cannot imagine what you are going through right now other than to say your beloved husbands death must be simply unbearable, then with everything else on top.

I hope you have family members to call on because you will quite clearly need plenty of support right now.

I am thinking of you and hope that other family members will be there to offer help and to lean on.

Regards, Tina

Moonmaiden,please accept my sincere condolences on the sudden loss of your Husband.My thoughts and prayers are with you and the children at this difficult


As everyone has said and I also would say - I'm so very sorry to hear that your dearest husband has died. So dreadful to also have PMR - so follow the advice given by people here on what to do about your pred dosage. Do ask your GP for access to counselling services too. This is not being silly or not necessary. Speaking as one who has had counselling, it is actually invaluable in helping you to to be you and to make you strong.

With regard to your foster children - are you still in touch with the foster organisation - and could they arrange to have someone help you with explaining to the children? You shouldn't have to do this alone - or are you aware of any local organisations that would support autistic people? Any help you can get you need to look for and accept. Again, that is not weakness or giving in, that is being very strong and caring.

There's no time limit on grieving - take as much time as you need. You may be told by some to 'buck up' - just ignore them! Every one of us is so different. I do hope, however, you can eventually meet up with Dorset lady's informal group as I'm sure they will also support you well.

Take great care of yourself and your children and I hope you get all the help you need.

dear @moonmaiden,

i am so sorry to hear about what you are going thru. all i can say is pray and take one day at a time. we can do anything for one day. your foster children can take the shock as well as you can. how old are they. ? and you can't or aren't able to keep life's tragedies away from them forever. i would imagine that you are a bit older then they are.

it sounds like you need some well needed sleep. you could talk to your doctor about that. i'm sure he could give you something to handle the situation for at least a couple of months. you need sleep. you just can't think straight, and you can't do that with no sleep.. perhaps even something for the children if they are old enough. unfortunately we can't take all the problems of life out of their lives, or yours either for that matter.

i will be praying for you moonbeam. . take care. and you can do anything if you want to. but also be your own best friend. OK?

love you, judiB

I am so sorry to hear of your difficult situation. My prayers are with you. I would seek medical advice right away. You need some sort of tranquilizer to help you through in my opinion. It should be given by someone who understands your illness.

So sorry for your loss sweetheart. Sending love hugs to you and your children. X

Dear Lady,

Your loss is so great . I send you love and empathy. You are in shock as you say and this is a 'long haul' situation. Can you set up local support? Please contact people near you who can offer daily support or who know other people who can help. The foster social worker, a district nurse, bereavement counsellor. Your GP can best advise you re the steroids. I do so empathise One often feels with this dratted pmr that you can only cope if nothing else rocks the boat (and I am talking very small things compared to what you are going through). I wish you courage and love. Jane

Just to let you know my thoughts are with you at this awful time. Not much practical help I know, but knowing someone cares can boost your spirits. Stay strong and keep in touch if you need a boost.

Dear Moonmaiden,

All I can add to the outpouring of love and care and advice is my love. Be gentle with yourself and accept help. You strike me as a person who gives love and care to others, you need it now., draw on that strength. Bless you!🌹

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