I’m afraid this is going to be a long post! The last six months have been a total nightmare, which is why I have been mia. After a routine blood test my husband was found to be so severely anaemic that he was sent to hospital for an immediate transfusion. During the course of the next week he had two infusions of iron and a blood transfusion. Then followed a series of appointments to see if he was bleeding anywhere. Nothing was found but he developed a urine infection, was treated with antibiotics but after a week still had an infection, was unable to walk and couldn’t get out of his chair without help. Paramedics who attended from GP surgery suspected sepsis, 12 days in hospital, numerous tests including a bone marrow biopsy, a possible diagnosis of cellulitis, tested positive for Covid but no symptoms,(caught in the hospital ), put in a side ward, blood transfusions about every 3 days, left lying in urine soaked bed despite me asking four times for them to change it, then a problem with last transfusion which caused his arm to balloon. Discharged the next day even though he still had mobility issues. He improved slightly once home but two weeks later he stopped eating and drinking again, couldn’t walk or get out of chair and was very confused. Ambulance called and again they suspected sepsis. Lots more blood tests and sepsis was found but we were never told that. They said he had acute kidney injury and an infection somewhere. 3 lots of antibiotics and intravenous fluids . Greatly improved after a week but still had mobility issues. Three days later they wanted to discharge him but I objected on the grounds that I was unable to lift him out of a chair and he had to be mobile before he came home. The following day he phoned to say he was being discharged. He was already in the discharge lounge when I got there, the physio who was getting him some aids was very unhappy as he thought he wasn’t fit to be discharged. No one even suggested a care package. One week later he was back in hospital after being unable to even turn over in bed, and very confused. This time he had kidney failure but was too weak to have dialysis, his blood pressure was very low and said they would just treat what they could and keep him comfortable. By this time he was quite lucid and chatty having had fluids. There was no indication or suggestion that this would be terminal. As there was a long wait to get him on a ward I went home in the late evening, something I now bitterly regret. At midnight I got a call to say he was deteriorating rapidly. Back to the hospital, where he was visibly in distress even though he was sedated. Four days later he died just before Christmas. During those four days he was heavily sedated, his daughter and I stayed with him with just short breaks for a shower and sleep. I had gone home to do that on the Friday morning and got a call from his daughter to say he had gone. Did he wait till I wasn’t there?
Before this I was having a problem with left hip, finding it difficult to walk. Was given exercises to do by physio which made no difference. Then I developed a really painful right shoulder, exacerbated by having to help hubby get out of his chair. Eventually got an X-ray of hip and shoulder. Nothing wrong with hip, but rotator injury on shoulder and OA. Was told to have blood test in case PMR was flaring and they would get back to me after that. No contact from them. ESR was 6, CRP not tested. So I now have pain and stiffness in both upper arms and both hips. Really struggling to do anything, even getting dressed. I’m currently on 5.5mgs of pred and am very tempted to go up to 10 to see if it helps. I’m also considering seeing a GP privately or maybe I should try and see Prof Hughes as he’s not too far away. Any thoughts or advice would be greatly appreciated as I just don’t know what to do and no one now to talk it over with. I should have gone to Pilates this morning- suggested by GP, but I was so stiff and in pain that I didn’t go, mainly because because of the thought of the uphill walk from the car park to studio!
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I am so sorry you have been through such a stressful time losing your husband. Stress definitely can affect PMR I reckon. I would go up to 10mg and I hope it helps. You could contact Cruse Bereavement Support. cruse.org.uk I came across them when we used a room next to them for our arthritis meetings. They sounded like they were having a riotous time whenever we were in the building and they were there too!
Oh my goodness, what unimaginable stress you’ve had and it sounds like the system let you down. It may well have been his time given the rapidity and number of acute issues that unfolded, but that is not the point. It is very difficult in situations where a person is stuck between a status of palliative and acute care because everything is happening too quickly. There is no time to stop and think about the information in front of them by all teams involved, or the lack of information available at the time. It can lead to the frantic events and then sudden loss, no time to be still with one’s companion. With this trauma that is often delayed in effect I can quite imagine autoimmune activity becoming more than before now rather than then.
On the subject of leaving him, I have seen it countless times with those who are going to pass. They go when relatives leave, often the ones with the closest connection, almost to the minute. I have no idea why but one got a feeling it would be the case. Sometimes the unconnected nurse needed to leave too.
It might be an idea to consider the flare protocol depending on how soon you can see a doctor.
I have no words of wisdom, except that I think you were absolutely right not to go to a Pilates session that you weren't fit for. Also, that if you are considering seeing Prof Hughes privately, then go ahead and treat yourself, because he would have more time for you than at a standard NHS appointment, and would be able to answer most of your questions, which really helps when you have a lot to deal with.
I am so very sorry for your loss, and all that you are having to endure. I am sure you will find advice and support from the experts here. Sending you a warm hug. 🫂
I believe I have had PMR twice. Both times I flared coinsided with very stressful family events outside of my control. I am 100% convinced that stress is an agrovating factor. As Dorsetlady has suggested increase your dose of Prednisolone please do this now.
You need the support of others and going to Pilates , Cruise etc and getting out the door will help. You can't do that if your body won't let you, give it a hand to do this.
Please update us in 3 or 4 days and let us know it's helping. Thinking of you 🤗
My heart truly goes out to you, what a terrible time you have had. The lovely ladies here give such great support; do everything they advise to help you regain your balance and stabilise your PMR. Big hug x
I am so sorry for your loss, im afraid the NHS is crumbling around us ! I wont go into details but can say a couple of things happened to me while i was in hospital having a THR. The test to see if you were fit to go home was walking down a corridor then down a flight of stairs. They have cut the flight of stairs out of the test ! I asked why they had done this as i had to do it last year when having my first hip done. To my horror they said that part of the mobility test had been dropped !! to get people home faster, needles to say i went home telling them i was not ready that night ended back in A and E waited all night to see a Dr sent home again in the morning. The district nurses had to come in for 3 weeks as i left the hospital with an infection ! What a waste of time and Money for the NHS. So i can relate to what you and your poor husband went through ! It makes me so angry . Take care Viv.🌹
What a ghastly terrible ordeal you have been through! I am not surprised that now you may have PMR - it ( and flares)seems to be associated with stress in my case and by a lot of other people. I can only recommend trying to reduce any kind of stress on yourself by asking for some help with anything that you think would be appropriate. To me 5gm seems not enough and 10 mg or 15mg would be better , but seek expert advice and just reduce physical activity if you can. Go and lie down when you start to feel tired - do not push yourself.
I am so sorry for your loss and the horrible time you have had. Bereavement and loss can have a huge effect on the your physical health. I increased my pred by 5 mg after the death of my daughter last October and I am still 2.5 mg higher than before. I think you have to give yourself care and time. I have stopped trying to taper as I am still grieving so much and have developed so many health problems. My very best wishes and sympathy x
Thank you for sharing this difficult event with us. Praying that you can now get the support for your own health and that you can grieve well for your beloved husband. All the best x
I'm so very sorry about your husband. My worst fear is they won't listen to me and miss something life threatening. My heart aches for you and the family. Gently hugging you. By the sound of it you're flaring, and who wouldn't with all you've been through. Try to get a higher dose of pred. Flare protocol. You were so right NOT to go to Pilates. Wait til your pain settles. Clear it all up and go from there. 🫂
My heart goes out to you; such a stressful time. Condolences to you on the loss of your husband. Many, more knowledgeable than I, have offered good advice. Thoughts and prayers to you💞
I am so sorry for your loss and all that you had to go through.Try and take of yourself during this difficult time.I read that love ones want us to remember them when alive so they try to wait til we leave them.Prayers and hugs to you ❤️
I'm so sorry to hear that - know exactly what you have been through, Virtual hugs xxxxx
"Did he wait till I wasn’t there?"
Almost certainly - my husband died at home after over 48 hours where we were sure each breath must be the last. It was a big religious holiday weekend so there would be no shops available and we had next to no food, I and my nurse daughter left to get something - by the time we parked at the shop, he had deteriorated further and we didn't make it back. My other daughter was with him but it was the first time I had left the flat.
He died at the end of October and I thought I was doing really well. I was encouraged to take up the bereavement counselling I was entitled to (not in the UK) but about March I woke up, got out of bed to go to the loo and my back just went into spasm - I had to call for an ambulance as I could not move. I had been in the middle of a treatment by my rheumy - a needling procedure - but it hadn't done well with the 2 days off over the weekend!!! I felt totally broken. All were in agreement though - the effect of the previous few months had come home to roost.
I was in much the same state as you - and it took months of physio to get me fit enough to go to PIlates, I really don't know WHAT your GP is thinking about telling you to do Pilates - even if the exercises parallel physio exercises, how it is done with a physio is different to a class, You need to be fit first. Better would be water work - but not even the intensity of a class, just walking in water, I had a few hydrotherapy sessions and only then did she send me to aquafit and it is a class aimed at rheumatology patients, not the healthy,
If you can, I would try to see Rod Hughes. But I suspect you may need some better GP support - it was steroid injections that made the most immediate difference to me and then I could work on the next stage, X-rays are to rule out some things - they do NOT show soft tissue problems like bursitis and that is what it sounds like could be your problem. Myofascial pain syndrome is part of PMR - and it is a beast.
Deciding when to die. Mine did for sure ... he was at home fortunately - about an hour or so after he'd seen both children and the 4 grandchildren and completely compos mentis.. .
Luckily the carer from the hospice was there at the time [he obviously knew that as well]
Knowing him from 46 years of marriage - and longer together - he probably thought to himself- "b u%%er this for a game of soldiers, I've had enough and I'm off!].
Hmmm! I had actually had a good talk to him the day before while we were alone, telling him that no way was he to go on 22nd and spoil all my happy memories, first date, wedding anniversary etc. So he chose to go on 20th! Obviously he listened, or I like to think he did!
Mine certainly didn’t - but then he never did - and I hadn’t reminded him it was our 46th WA.. just that he needed to last the day until the kids arrived.
We were all supposed to have a couple of weeks in a country cottage - all planned in advance by son [knowing the end was in the offing and it was high summer]. Sure he hung on until daughter and family got here from NZ… so that was good.
Actually because we were all together from then on, both children helped with sorting funeral [although much has been done by hubby] which we managed to get organised before my daughter & family went home, it was a very cathartic and enjoyable [some might think that’s a strange thing to say] time.
We all mourned together and laughed together remembering the good times, and the older grandsons [13 & 17 yrs] and DIL & SIL learned a lot of things about ‘granddad’ they didn’t know before.. he certainly lived life to the full.. and I know it helped me in my bereavement.
As I’ve said before, August 12th had a great significance in his life- he was a country boy - a gamekeeper in his youth and later in life [it’s the first day of the shooting season], he joined the army on that date, we got married on that date and he died on that date. As they say - “aligned in the stars” if you believe that sort of thing. 😊
My very best wishes to you… life throws a lot at us at times, but we are very resilient, and we can, and do get through it… 🌸
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