Struggling, weak, sleeping on and off all day, anxious, emotional

[Lyndab62]

Background.. PMR since Dec 16, at 5.5mg 2 months ago. Hip pain... made worse by physio, unbearable, upped to 10 then 12. Finally felt "better" as in able to potter around a bit, walk 15 mins, hip pain gone after helpfrom private physio . Reduced to 11 mg but last 10 days feel awful. Very weak and wobbly. Diahorrea every day 3/4 times in the morning. Sleeping on and off all day. Too tired to even read sometimes. Feel spaced out at times. Not with it. Racing heart and stomach pain. Lost weight, no appetite, and I'm quite thin now and not much muscle tone.

Bloods done...normal.

Waiting results of stool sample.

Waiting to see minds matter... mental health team.

Saw rheumatologist for the first time last week. Wants me to reduce. She did a ultrasound on hips, no bursitis, but there wouldn't be now! Wish I could have had this 2 months ago. She said to book her to do another if hip pain return s.

I'm driving myself nuts...what's PMR, what's anxiety, do i have Chronic fatigue now? Why no appetite? I'm v emotional and worried.

Live alone but family and friends around a lot.feeling v low.

Thank you everyone.

[Soraya_PMR]

In reminded of a spell of nausea and diarrhoea that I had trying to reduce from 8mg, and thought my adrenals might have been the cause. My rheumi didn’t agree and wondered if I had a type of inflammatory arthritis that is associated with diarrhoea (she did give it a name, but sorry I’ve forgotten what it was!) A scan disproved her theory, so I still think my idea could be valid. However as you’ve been down to 5.5mg previously I doubt this is the case for you.

Of course you may well have some bug that is completely unconnected to PMR, but the diarrhoea may be inhibiting your absorption of pred. So your daily absorption could be much lower than 11mg. Therefore check out symptoms of ‘adrenal crisis’ and see how you compare. Is it possible that you could take your pred after the diarrhoea has settled for the day, just to get you through this rough patch. Alternatively there are routes other than oral to administer steroids.

It might also be worth considering some rehydration salts (Diorylate, or supermarkets do their own versions) as diarrhoea on its own can make you feel awful. Try to drink as much as you can, even if you don’t feel like eating (maybe 24 hours without food would help, if it’s a bug?)

[PMRpro Ambassador in reply to Soraya_PMR]

Enteropathic arthritis???? Its the form associated with IBD.

[Soraya_PMR in reply to PMRpro]

Yes I do believe that’s it. Never had IBD previously, so I didn’t much agree with her suggestion. But we have to play the game, eh? Two scans later.......

[Lyndab62 in reply to Soraya_PMR]

Thank you for your reply. I will try taking pred late morning and see if that helps. And the salts. I'm drinking plenty. Many thanks

[Soraya_PMR in reply to Lyndab62]

I hope you get some resolution soon, life sounds pretty grim for you currently 🙁 Do keep us updated.

This is a decent read, and don’t we wish the medics would act as speedily and thoroughly as suggested here...

addisons.org.uk/articles.ht...

[PMRpro Ambassador]

What you describe really doesn't sound typical of the PMR we talk about here but PMR isn't the illness, it is the name given to a typical set of symptoms that are due to an underlying condition and there are several of various degrees of seriousness. Have you had the blood test for coeliac disease - it can be associated with PMR-type symptoms as well as gut problems. Inflammatory bowel disease is also a possibilty that should be ruled out. You have obviously lost a fair bit of weight even though on pred and that really does need investigating - not just by a rheumy. Your GP should be putting his thinking cap on and ordering tests if you are this unwell - so make sure he is aware of your condition. Get someone to take you to the practice if they won't listen.

I do hope you feel better soon.

[Lyndab62 in reply to PMRpro]

I've another appointment tonight with a decent GP. My 82 year old mum is taking me...fit as a fiddle! Apart from coeliac and IBD, are there further tests that could be done? A blood test last week seemed to cover everything, well the usual. I'm exhausted trying to work things out myself.

My hands and arms are sore and weak today. W ould it be worth upping pred even more?

Thank you

[PMRpro Ambassador in reply to Lyndab62]

I suppose you could try but please don't regard pred as a cure-all for muscle problems, it isn't. And until you have seen this GP tonight I wouldn't up the dose, let them see you in your current state. They do have to understand that you are physically unwell with things that really aren't typical of PMR. And as Soraya has said, poor adrenal function must also be considered.

[Soraya_PMR]

One other thought, are you on plain pred or coated?

[Lyndab62 in reply to Soraya_PMR]

Thanks for your time...plain pred

[Soraya_PMR in reply to Lyndab62]

Hmm, was going to suggest that if you’re on coated, maybe a change to plain might help. There’s that thought out the window 😉

[Lyndab62 in reply to Soraya_PMR]

Worth a thought...I'll try anything!

[Lyndab62]

Another point...I usually come round a bit towards the end of the day, and feel less weak then. Don't know if this is relevant

[PMRpro Ambassador in reply to Lyndab62]

Make a note of everything so you don't forget when you see the GP.

[Lyndab62 in reply to PMRpro]

I will. Thanks for your help and support.

[Jackoh]

How did you get on at GP surgery? X

[Lyndab62 in reply to Jackoh]

Hi, please see below Jackoh

[Lyndab62]

Update...saw GP last night. He is v kind, approachable, listens and discusses. Gold! First job more tests to rule in or out IBD and other bowel problems. He didn't rule out that some of my physical problems, appetite and weight loss, could very well be anxiety...which I think is the case as I feel better or worse hour by hour sometimes. But he's keen to exclude what he can and said to see him again end of next week when more results are in.

A better day today, helped by phone calls and texts from family and friends and my dad hoovering and mum putting washing out! Son and daughter in law to be brought food and I've eaten better today. It's not always easy living alone, but I'm so so lucky.

This really isn't me but I'm going with it and hoping I get through to a better place soon.

Thank you to this forum too. The advice is invaluable

[PMRpro Ambassador in reply to Lyndab62]

That is what I was hoping to hear! Good egg the GP!

[Lyndab62 in reply to PMRpro]

He's a top man! He's only in his 30s...hope he stays with this practice.

[powerwalk in reply to Lyndab62]

Good luck. A doctor that listens and helps. Worth their weight!!

[Jackoh]

So pleased he is taking all this seriously and that you are getting the support you need just at this time

[Lyndab62 in reply to Jackoh]

Thank you 😃