Leg Satsuma Update: Over the last couple of days my... - PMRGCAuk

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Leg Satsuma Update

Singr profile image
29 Replies

Over the last couple of days my pain has become excrutiating. To the point I feel sick. I have called NHS 24 who referred me back to GP surgery as they had been the ones to send me for x-rays etc. Waited until next day with no sleep. Spoke to one of the GP's (the one who said my condition was stress and misdiagnosed. Basically he told me I had to put up with it because GP surgery would not see me due to corona virus. I just felt like crying. I told him I have had to start using the Naproxene I was told not to take as it is an NSAID. Even that did not have any effect. He tells me there is no way it is PMR possible Osteo arthritis and wear and tear. Told him I have had x-rays but not showing up any wear and tear. Also explained to him this is like pressing pain due to the fluid sack which is getting larger. I'm pretty angry. Feeling again like medical profession not listening. Conclusion: he will prescribe me some Naproxene which does not help. Hacked off. Thoroughly hacked off and wincing with the pain.

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Singr profile image
Singr
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29 Replies
SheffieldJane profile image
SheffieldJane

I hate when you enter one of the gaslight zones where a GP ( usually) completely denies your reality. Stick to your truth and avoid this particular doctor. “ Perplex me and I will take away your diagnosis and diminish it with words like stress and wear and tear, you hypochondriac “. Is how it feels. I have been reading the vaginal mesh stories and feeling very angry for these poor women.

We need to continue to fight our corner with research and assertiveness.

Singr profile image
Singr in reply toSheffieldJane

I love the way you describe our situation. It made me laugh thanks. I am of course going to nick it.

Marilyn1959 profile image
Marilyn1959

If the GP is that unhelpful go to A&E! You need effective pain relief as a minimum and further investigation of the cause of the swelling. If the fluid sack needs draining they might be able to do it there and then or speed up an urgent referral to the relevant department. I don't know how GP's are justifying their existence at present. Why is it that the nurses at the practices are seeing patients face to face and talking on the telephone to patients, when you can't see a GP or talk on the phone to one for love nor money. What are they? A superior species that needs greater protection than a nurse or pharmacist or dentist? Makes me really angry and I don't even need to see one at present!!!!😤😤😤😤🤐🤐🤐

Oumaof2 profile image
Oumaof2 in reply toMarilyn1959

What worries me greatly is the oncoming winter! If GP's aren't happy with face to face now, when cases are somewhat lower, how are we ever going to see one when cold weather and C-19 returns?... Very very concerning...

scrambledegg profile image
scrambledegg in reply toMarilyn1959

My GP has been fantastic about telephone consults then face to face if needs be. But I have a friend who's a district nurse covering several surgeries and none of the GP's will do face to face. As she says, the nurses feel like cannon fodder as they're now doing calls on behalf of the GPs!

Marilyn1959 profile image
Marilyn1959 in reply toscrambledegg

But why?

Singr profile image
Singr in reply toscrambledegg

Shocking isn't it.

Singr profile image
Singr in reply toMarilyn1959

I'm with you on that one. Grrr.

whitefishbay profile image
whitefishbay

I’d go to A&E.

PMRpro profile image
PMRproAmbassador

I too would be at A&E and telling them WHY. Pain is ALWAYS a sign that you have something that needs sorting and your GP is being insensitive (at best) and incompetent at worst.

Singr profile image
Singr in reply toPMRpro

Totally agree.

S4ndy profile image
S4ndy

A&E!

It's ridiculous that your GP isn't seeing people. Our GPs have been seeing people all the way through the pandemic. They did do telephone triage first and saw people when needed.

I was at GP on Monday and they told me that all their staff had had an antibody test! 50% of the staff in both GPs surgery and attached pharmacy, were positive for cv-19 antibodies. Most of the staff had not shown symptoms of the infection and worked right through the peak!

Don't be worried about going to A&E as they are separating out people with symptoms and keeping on top of infection control. My Rheumy said that the hospital is safer than the supermarket at the moment!

Do hope you get it sorted soon.

Rugger profile image
Rugger

Definitely A & E. I fell 2 weeks ago and broke my arm, but felt very safe at the hospital as they had put in place all the necessary procedures. My GP has prescribed high strength codeine for the pain in my arm.

You deserve far better care!

SheffieldJane profile image
SheffieldJane in reply toRugger

Oh no Rugger, poor you! What happens to your Tocilizumab now?

That sort of thing really shakes you up. Which arm? Your rugs!!

Get well soon. At least the Codeine will be really soothing. 🌷

Rugger profile image
Rugger in reply toSheffieldJane

Thank you, Jane. Rheumatologist says TCZ can be continued, thank goodness. We have to pause it for an infection, but not this. I blame the TCZ for making me feel so well and gardening so much during lockdown - I fell in the garden after a morning's work on the vegetable plot! 🌱

It's my dominant, right arm, so frustrating to say the least. No rugging, knitting and 'excused all duties' at home, so being waited on hand, foot and elbow - except it's the head of my humerus that's come adrift! 😀

Yet another exercise in patience for me.

It will pass.

SheffieldJane profile image
SheffieldJane in reply toRugger

When we look back we just won’t believe this strange time. Encouraging about Tocilizumab, I have no energy or motivation currently. 🌷

Singr profile image
Singr in reply toRugger

Ooh what is TCZ?

Rugger profile image
Rugger in reply toSingr

TCZ is Tocilizumab, a biologic drug used in the treatment of GCA. Apologies for the 3-letter abbreviation! It helps to block the inflammatory process, but if we have an infection, we have to pause the drug to allow our body to fight the infection.

Let us know what you decide to do and how you are. 🌻

PMRpro profile image
PMRproAmbassador in reply toSingr

The brand name is Actemra

Marilyn1959 profile image
Marilyn1959 in reply toRugger

Oh Rugger! So sorry for you. It never rains but pours. The rugs will have to wait! I do hope you are at least comfortable. Sending you virtual hugs xxx♥️♥️♥️

Rugger profile image
Rugger in reply toMarilyn1959

Thank you, Marilyn I well remember your fall and fracture. How are you now?

Singr profile image
Singr in reply toRugger

Ouch poor you. that was the thing that was bothering me. I'm worried about bringing infection back to my mum as she would not survive it.

Rugger profile image
Rugger in reply toSingr

The hospitals are possibly the safest places, as they are stopping everyone at the door, providing masks and sanitiser, not allowing anyone in, other than the patients [poor OH had to sit in the car park for 2+ hours!] etc. Our hospital has been reconfigured so that 'minor injuries' [didn't feel like it!] were directed to what is usually the ECG suite etc. I felt VERY safe from CV-19. However, I can sympathise with your dilemma, but you really need to get your leg examined and the pain controlled.

Best wishes.

PMRpro profile image
PMRproAmbassador in reply toRugger

Our hospital does allow an accompanying person in - once I have been with OH and they just accepted it, the other times I have been cross-examined! Don't let you in until the appointment time either ...

Constance13 profile image
Constance13 in reply toPMRpro

Are you not "officially" his carer? They would surely let carers in!?!

PMRpro profile image
PMRproAmbassador in reply toConstance13

Nothing official no - but we just say he can't hear whoever he is going to see!

Marilyn1959 profile image
Marilyn1959

Lots of us saying A&E. How are you today?

Singr profile image
Singr

After another crap sleep I can no longer bend or straighten my leg without extreme pain. Avoiding walking and I can't concentrate on anything. I think A&E will be the only answer but my mum is trying to discourage me due to covid risk. It's a dilemma.

CT-5012 profile image
CT-5012

I wouldn’t worry about getting infected, I have been to A&E with a fractured wrist , fracture clinic twice, had an operation on my eye for glaucoma and two follow up clinic visits since, three more to go. Temperature checked and checked for any symptoms as soon as you get in the door, every one wearing masks including me. Also had swabs taken two days before my operation and told to self isolate until operation. Now locked down until the end of this month, looking forward to a haircut in August 😷😂

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