Just an update

[happytulip]

Hi Everyone, thank you so much for all of your good wishes. Once again the kindness and support on this forum is incredible.

Unfortunately I have not yet moved to the appropriate ward and medical care because of various factors delaying the move. However, because of LUK and Paul getting involved, that is the plan. Prior to Paul's involvement there really wasn't any plan to speak of.

Despite not being on the appropriate ward, I am getting very kind nursing care and the ward doctors are trying to be as helpful as possible whilst acknowledging that their speciality is different.

I am actually in with the most horrific muscular pain which is stopping me mobilise. I'm even struggling to use a Zimmer frame and almost took a tumble this morning whist try to get to the bathroom.

The strange thing is, is that the muscular weakness, pain and swelling came out of nowhere and occurred within 3 days. I am unable to use my arms or legs go or anything. Even drinking a cup of tea is a challenge.

The only thing that has happened recently is a course of antibiotics after a tic bite. That's the only thing that could have triggered some type of reaction.

Who knows what's caused it but I'm so desperately hoping they can sort me out soon.

Once again, MASSIVE thanks to Paul and all of the Lupus UK team. Things really did change in a big way for me after their help.

Thank you,

HT 🌷🌷

[PMRpro]

That's what happens with PMR - can strike overnight, And it sounds like that ...

[happytulip in reply to PMRpro]

That's what I wondered but apparently I'm too young. I think it's a possibility n

[PMRpro in reply to happytulip]

It DOES happen in under 40s, it is unusual but it does happen. Prof Sarah Mackie in Leeds, who is probably the UK expert in PMR, says she has patients in their 40s. The youngest patient case report with PMR in the literature was 24! We know of a GCA patient in S Wales who was 37 when he died with undiagnosed GCA - the pathologist found it, they always get it right, just they are too late!

Wonder if someone could be persuaded to contact her. Does pred relieve it?

[happytulip in reply to PMRpro]

Steroids improve it, and I get relief when I take diazepam too.

[PMRpro in reply to happytulip]

Muscle inflammation causing cramping maybe. Have they looked at your creatine kinase level?

[happytulip in reply to PMRpro]

Yes CK levels have been done. Can you have PMR if you have a normal ESR? Remember that my inflammatory markers never go up. The highest my CRP has been was 21 and that was with urinary sepsis.

[PMRpro in reply to happytulip]

Yes - increasing acceptance of that and suggestion from an Itlian group it may be a subclass of PMR.

semanticscholar.org/reader/...

and some of his previous work:

ncbi.nlm.nih.gov/pmc/articl...

academic.oup.com/rheumatolo...

[KayHimm]

Oh, Happytulip, I am so sorry to hear about this serious episode. I can hear how much you are struggling. Hope your doctors get this figured out soon. It does sound sort of fast and furious.

Many 💐s

Kay

[Kevin53]

So pleased that Paul and his Romford team were able to provide assistance. Hope it all improves quickly. Take care. Best wishes Kevin 💜

[happytulip in reply to Kevin53]

Thanks Kevin, please scroll down and take a look at my progress, or lack of it. I'm stuck on the wrong ward because they can't source LED lights, I would happily get someone to bring some from home or order some from Amazon and pay myself. I'm giving up.

I'm supposedly a "complex patient" who needs a management plan to be cared for by a senior doctor in a certain team. And instead I am being seen by a newly qualified doctor just for legal reasons. No one is actually trying to work out what has caused this problem in my legs. Ty hey are just plying me with seriously high levels of opioids.

[Loopyru]

Hope things will soon get easier for you and hopefully the doctors can soon find out what brought all this on . You take care and am glad Paul was able to intervene for you

[happytulip]

Unfortunately I am still in the respiratory ward and being checked in by a very nice junior doctor each day. They are nice and have wonderful nurses, but that's not what I need. I need someone to work out what has happened to my muscles and find out the cause of this instead of just plying me with excessive amounts of opioids, benzos and steroids.

Paul did indeed help because it got the big wigs in a flap but now it seems to have ground to a standstill and I'm no further forward that I was on Sunday when I came in.

[Partner20 in reply to happytulip]

I am so sorry that your proposed ward move has come to a standstill. Having noticed that you were recently bitten by a tick is there any possibility of having contracted Lyme disease? This can lead to debilitating muscle, joint and head pains, and can leave people bedridden. Contrary to popular belief not everyone develops the traditional bullet ring rash, my daughter was one. So many here are thinking of you and hopefully today will bring better news and progress.

[happytulip in reply to Partner20]

I did get one massive textbook bullseye rash from the tic bite and was treated with 3 weeks of amoxicillin. My initial bloods has come back negative for lymes but they are running them again. Thanks for the tip xx

[Partner20 in reply to happytulip]

Good morning! How kind to take the trouble to reply when you have so many concerns of your own to address. Glad to hear that you were given a course of antibiotics after your bite. However, I understand that Lyme infections are complex, and can lead to long-standing further conditions even after being treated by antibiotics, so always best to bear that in mind. I do hope today brings better news for you, and that you will finally be treated as you should be. All best wishes.x

[BeeManShrop]

Hello HT So Sorry to hear your sad experience at Addenbrookes. It does make me wonder exactly what the criteria and assessment process is for a hospital to become classified as a "Lupus Centre of Excellence". It sounds as though this hospital is sadly lacking when it comes to dealing with a Lupus patient especially if they do not have basic requirements e.g. available specialist doctors who understand the needs of SLE patients and only partially have LED lights installed. I wonder whether there is a system to regularly review "Lupus Centres of Excellence" hospitals and should they not be maintaining the required standard how is the classification removed/withdrawn?

Surely, it is very misleading (to say the least) for Lupus patients when an accolade suggesting that certain hospitals provide an "excellent" service to Lupus patients when this case, and others, seem to demonstrate that the opposite is really the truth. Perhaps Paul can consider this please.

[happytulip in reply to BeeManShrop]

Paul explained that the centre of excellence award is given based on the outpatient care, which I cannot fault in this trust. The lupus team and specialist nurses are brilliant.

However, it is my opinion that inpatient care should be incorporated into the centre of excellence award. On the basis that if I am well enough to attend an outpatient appointment then that's great. But if I'm unwell with a medical problem and am admitted to hospital as an inpatient that affects my SLE then I am really vulnerable, especially if I am being looked after any speciality like endocrinology, cardiology, general medicine. SLar patients are rather complex and need to be looked after by medics who know and understand the disease and in my experience, everytime I have been admitted and carer for by a "random" speciality then I always get discharged and readmitted.

I believe a centre of excellence should take into account when patients they are at their most vulnerable, which is laying in bed hooked up to drips and drains and not having their sle symptoms taken into account because "the bloods are all normal." I'm tempted to have they put on my grave!

But that is just my opinion.

HT 🌷

[BeeManShrop in reply to happytulip]

I agree with you completely. When an SLE patient is so ill that they need to be admitted to hospital surely that is the time you need, more than ever, to have the "excellent service" from the NHS specifically tailored for the complexities that go with SLE.

My wife was admitted several years ago as she could not swallow anything, neither food nor meds, and was discharged after two weeks with no diagnosis. Within a week she was readmitted at the height of Covid, and was in a gastro ward. After a further 4 weeks she had deteriorated (unbeknown to me!!! a no one at the hospital saw fit to tell me!!) eventually she was discharged and I wrongly thought she must be fit enough to be sent home. When I asked how I was to manage to feed her as she was been fed through a tube, it was only then that the consultant on duty called me in to tell me that she(the consultant) thought my wife only had weeks to live and they were sending her home, with no diagnosis, for the last time. It was two weeks after discharge that the results of a blood test had come back showing that her dsDNA was over 1000 which indicated SLE. It was four months later that the rheumy started the hydroxy treatment for SLE.

Luckily, she is still about (and bossing me ) 3 years later. Goes to show that consultants do not know everything. I should say that this was NOT a centre of excellence hospital -- far from it.

Hoping you get well soon.

[happytulip in reply to BeeManShrop]

I don't think I have the adequate words to respond to your reply, other than to say that I am so relieved that your wife is still with you. Its an unbelievable tale!

[Hoofprints]

I hope you are on the mend soon 🤞🏻You mention a recent tic bite. Have they tested you for Lyme's disease? Can be done on a blood test and might be worth ruling out as symptoms of Lyme's can be pretty nasty. Prompt treatment with the right antibiotic for the right duration should deal with it.

All the best

[happytulip in reply to Hoofprints]

Tick bit was massive and I had the appropriate abx therapy. Bloods so far are negative for lymes.

[Hoofprints]

👍👍