I have spent most of the last five months in a "fit of the vapours" on my sofa (literally speaking) trying to rouse myself into some sort of activity beyond feeling comatose due to the onslaught of symptoms fondly known as PMR.
Despite the attentions of my dedicated Endo and his attempt to knock the inflammation for six with a short sharp burst of Prednisolone - we have failed.
My CRP markers are continuing to rise despite my Prednisolone dosage as is my ESR - but none drastically so, but enough to indicate that there are still some inflammatory issues not being controlled.
He has asked my GP to (once again) refer me for expert advice from Rheumatology and advised that the issue is not related to my ME but specifically to PMR with a query that I may have some Giant Cell activity occurring as well.
I have been attending the Eye Hospital for the last year or so because of abnormal muscle pain in one eye. They have been completely brilliant with me but say that they accept there is something going on but it has not yet manifested itself enough for them to identify the problem.
Anyway, all that aside - I had committed to a birthday celebration night out on Saturday even though it was the last thing I really wanted to do...
As it turned out, I had the best of times and at 1.30 am was still raring to go...however at 1.49 am I was on my way to A&E at the QMC, Hospital, Nottingham.
The whole thing still feels a bit surreal. I stood up as we were about to leave and the heel of my shoe caught on the cross bar of the bar stool and I found myself hurtling through the air towards the concrete floor at great speed.
Several hours and six stitches later I realised just how fragile life can be.
Strangely, I had disabled my iphone code two days before otherwise my friends could not have contacted my son. I had also left my steroid medi-alert bracelet at home because the charm had fallen off.
So, sorts of makes me think you really should have everything up to date because you truly never know the moment..
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Pipalina
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OMG and ouch ouch ouch...hope the night out was worth it, you've certainly got the battle scars as a reminder...and what a reminder for you to keep things up to date. How are you feeling now?
Seriously though, you need to see a Rheumatologist for diagnosis - why is your GP not referring you? - you can insist if only for the diagnosis then he/she can manage it, otherwise see another GP in the practice.
I am sorry you have ME, did you get a diagnosis for that as I know my husband never did, they didn't seem to do it back then! It does annoy though that once you've got it it is the fallback for everything else.
Wishing you a speedy recovery after your fall - ouch again - and hope you get some sense out of someone soon for your other problems.
Many thanks for your reply and wishes...ouch is right but I'm doing fine really and the stitches come out tomorrow.
My GP did refer me to the Rheumatology department here in Nottingham which operates a triage system. As such, the referral was rejected as they decided that my symptoms were ME related and offered me an appointment at a pain/CFS/ME clinic - which I declined - as I knew my symptoms were not ME related!
I developed ME in 1992 but it wasn't "formally" diagnosed until around 1994. And yes it does seem to be a default cause of anything that is wrong with me with many of the medical profession. My best wishes to you too...Kathy
It only takes a minute for life to change doesn’t it! And yes you’re right, we should keep everything up to date, but usually we don’t! A lot of, Ill do it tomorrow.
Just give yourself plenty of TLC for a little while, and if necessary, an extra mg or two if needed.
I'm a child of the sixties so the scar might actually thicken up my almost non-existent eyebrows!
Oh dear Pipalina 💐
How awful for you, especially after you had such a good night out! It will have knocked you for six & as Dorset Lady says maybe a slight increase in Pred for a day or two.
Your Endocrinologist could refer you to a Rheumatologist if your GP is disinclined for whatever reason.
I’ve just had a referral the other way around from my Rheumatologist to an Endocrinologist, just another battle in the war against PMR
I do hope you feel better soon & this fall doesn’t cause you to much pain or stress on your body.
I see my endocrinologist on a private basis and he doesn't do any NHS work. His request to my GP is so that she will refer me under the NHS in this instance. We will see where this leads as an initial GP referral in February was rejected - this time it does have the weight of a supporting letter from my edno detailing symptoms, blood test result and his opinion on a diagnosis of PMR.
Hello Angela - I hope my GP does get a rattle on too!
I've just read your post about your Endocrinologist - mine is a little more formal than yours and does wear a suit, shirt and tie! More importantly he is brilliant with me.
I hope yours manages to "wake-up" your adrenals. Best wishes, again - Kathy x
Oh Pipalina you must be in total shock you poor thing! This will be a setback for your general health too. 😩 It’s back to the safety of your sofa for you.
I do not understand your Endo’s treatment protocol. The short sharp bursts of Prednisalone would make anyone with PMR ill and their inflammation levels rise. It sounds to me ( merely a patient) that you are experiencing the worst of both worlds, the disease and the Prednisalone side effects. Your poor body doesn’t know where it is. The usual treatment is a start dose of between 25 mgs and 15 mgs and a slow taper of no more than 10% of your dose, until you find the lowest comfortable dose to rest at. PMR apparently has a median duration of 5.9 years. The harmful inflammation has to be kept at bay - nothing will knock it out - more’s the pity. All we can hope for is control of inflammation until the disease hopefully burns out. I sincerely hope that GCA has not developed for you.
Forgive me if I have got the wrong end of the stick and I am so sorry about your bizarre accident. Get better soon. 💐
I was a little "dippy" for a couple of days - more than normally that is! I've had a few days taking things easy and I'm doing okay really - stitches come out tomorrow.
I completely understand your comments regarding my Endo's treatment but he has looked after me (very well) for around ten years so I have a great deal of trust in him.
I actually consult him because of my thyroid disease but he was the one who recognised that my recent symptoms were PMR related. As I mentioned above, my original GP rheumatoloy referral was rejected so without his support, intervention and pred I believe I would be suffering even more.
However, it remains to be seen whether I will receive the expert advice he has requested...Best wishes to you - Kathy
Trust is a great thing and of course he will regard your state of health in the whole not just one condition. I have Graves Disease too. The Endocrinologist experience never felt tailored just a sausage factory really. You’re lucky. All these energy stealing things. I wish someone would join them up, and understand the common cause.
I am so sorry to hear about your accident. Ouch! That looked like it hurt. You reminded me to keep everything updated (meds) and with me at all times. Keep persisting on your health concerns. You are the best advocate for your health. I do not know where you live but in California I see a rheumatologist, neurologist , and my GP to monitor my PMR, GCA, and Fibro. You deserve the best care possible. Hope you get your medical questions answered soon.
That looks very painful and as you say we really need to keep our information up to date .
I must admit its normally when I am sat on a train going away I think of updating my Steroid Blue Card and then notice I haven't done this since last time I went away.
I was told for 3 years or more I had ME but after doing so much research and arguing with my GP. Eventually another GP in the practice agreed with my diagnoses of PMR and put me on steroids.
Hard to say what causes my fatigue normally only kicks in during the evening so early to bed as get so grumpy irritated and know I need sleep .
Normally between 9 to 10,00pm each night but awake just after 5 00 am
Could be ME.PMR or thyroid chances are I will never know
"Could be ME.PMR or thyroid chances are I will never know"
I think when you have a few auto-immune issues many of the symptoms overlap and it is difficult to identify which one is causing a particular problem.
My ME causes overwhelming fatigue at times but the type of fatigue I experienced with PMR was unrelenting and did not subside with rest.
So, it's probably all of the things you mention...Best wishes!
Oh no. Eeeeek! Glad you are feeling a bit better. But it's typical for such things to happen when the phone is iffy etc.. I know what you mean about knowing a new pain symptom is not part of a pre-existing condition. It's fibro for me. Don't they realise when you live with your body everyday you get a sense of which sympyom belongs to a long term condition!!?!?
Please take care and I hope you can get further along to finding out what is messing with your eye. 🌻
So sorry to hear of your mishap! Glad you had a celebration before. Falls scare me! I’m walking in two low boots for stress fractures, visiting my mum and got a terrible stomach ache last night with frequent bathroom trips. PMR is challenging enough but coupled with other things, we get thrown off the couch! Get your blankie and have a seat!
Oh dear, sorry to hear you are suffering too. I've spent the day on the sofa with a blanket and a book much better for me than doing the pile of ironing awaiting my attention! All the very best to you x
Ouch! Hope you had nice paramedics. Fancy being part of the Sat night crowd in A&E!
"Despite ... his attempt to knock the inflammation for six with a short sharp burst of Prednisolone ... there are still some inflammatory issues not being controlled."
Nothing is controlling the inflammation - pred only mops it up, it hasn't changed the cause. It's the difference between the dripping tap that is making the floor wet where you keep using the teatowel to wipe it up and calling the plumber to replace the washer. Pred is a teatowel and the thicker it is the better it mops up the puddle. But it has no effect on the underlying, long term cause of the inflammation. It still keeps coming...
You need a bit more and on an on-going basis. And after that experience - you'll probably need a bigger bit more!
Yes, I'm one lucky girl - Saturday night in A&E. Don't recall the paramedics - good looking or not - or very much else after I hit my head until I found myself sitting in A&E covered in blood.
It hasn't taken me long to discover that Pred is likely to be my long-term friend and not just a passing acquaintance.
I only hope that Rheumatology will be willing to see me this time and that the supporting letter and information from my Endo will carry some weight!
Ouch! As you say could have been worse. Hope your referral to rheumatologist is successful.
PIPALINA, OMG!!!!! I cannot believe this!!! That was some night out on the town!!! Wow! I am a lightweight in comparison! I had no stitches and enjoyed the concert in spit of the cuts and bruises! I am so sorry, I hope this hasn't deterred you though... we have to live this life until it's taken away from us! Put those high heels back on (okay maybe a pair of trainers!) and get back out there! xxxx
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