Trigger of P M R from C.V. last year

[Seablue88]

Hello everyone.

Last September I got C.V.I was quite sick for 10 days. [after 3 jabs] The usual headache, aching body, exhausted .Afterwards I did think why do I still ache and have a very sore shoulder. I just kept thinking this is after affects of C.V. The pain and stiffness got worse.I was taking ibuprofen and wondering what was going on. { I am a very fit person swim and walk big shock to me] I was so bad I couldn't walk, getting into bed and out of my bed was like torture.Of course no sleep as well.Unable to get a Dr. appointment.My Husband took me to our walk in health centre.I waited for 3 hrs.I just kept walking around and trying not to stiffen up.I also called 111 at no time did any of the medical people mention the word P M R like no one had heard of it.The Dr. was very thorough she was concerned about my pins and needles radiating into my face and side of my head.Of course she told me to go to A and E and take a letter.We registered and waited 8 hours to see a Dr.I took paracetamol and hubby got us a drink and I had a couple of fruits and snacks in my bag. Dr.said I had nothing to worry about [I did have a blood test whist waiting] you have Rotator Cuff Syndrome. He gave Co-Codomol and that was it. Finally I saw a locum older Dr. after 12 weeks and loss of 1 stone in weight [which I couldn't afford to loose at 71 yrs old] He said the word PMR what! I was gobsmacked .We quickly got the magic pills [Prednisolone 20 mg.] and after 2days I slept and started to feel my pain easing.The fact that no one thought about P M R is unbelievable.All that pain,I though of every horrible condition under the sun I could have. 11months later I am doing great ,still swimming walking being sensible I do flag after lunch.So I have 30 mins sleep.Good diet no processed food ,plenty of fruits veggies and rest often.I am now down to 2.75 mg. I will not sit on my Laurels I know its still there and I am doing my meditation and use my Shaki Mat everyday.

I feel for everyone ,with all their long term problems. I wish everyone the very best of Luck xxxx

[123-go]

Hello, Seablue88. That’s quite a story and one that many of us will relate to. The delay in diagnosis and treatment, the struggling to perform the simplest of tasks, the not knowing what is happening to our bodies, dramatic weight loss, the effect on mental health and finally the relief with diagnosis and prednisolone.

You are doing very well and have a positive outlook. To be at 2.75mg of prednisolone from a starting dose of 20mg in less than 1 year (with no flare ??) is quite remarkable and although not unheard of is unusual. It would be helpful if you added to your bio your tapering programme…dates and doses.

I hope your journey to remission continues without mishap.

[Seablue88 in reply to 123-go]

Thank You and Hello 123-Go from this lovely North Yorkshire morning.

Well My doctor more or less said do my own tapering very slowly and just see her now every 3/4 months unless I have a problem.I only do very minuscule tapering 3/4 of a tablet at first for 4 /6 weeks then 1/2 then a scap 0.25. Now it really is getting low and Im'e keeping my fingers crossed.

Please you good people do not follow my pattern I can see there are some very sick people on this forum. I am just trying to do what I think is a good plan for me.

I wonder if after C.V. it has a different way of manifesting itself regarding P.M.R.

I do wonder if anyone else had a trigger from C.V.

[DorsetLady PMRGCAuk volunteer in reply to Seablue88]

I wonder if after C.V. it has a different way of manifesting itself regarding P.M.R.

It does seem to, and fortunately those affected those get through it more quickly. Hope that’s the case for you.

[123-go in reply to Seablue88]

If it’s working for you that’s brilliant! Thanks for the reminder that what is good for one patient may well not be so for another 🙂. Another thing that that strikes me is your healthy relationship with your doctor who trusts you to know your own body and taper your pred accordingly. Thank you for sharing your experience.

[Seablue88 in reply to 123-go]

Thank you for your support. That is exactly the phrase she used and I was pleased .I count myself very fortunate and I have 4 children and 8 grandchildren and they are all well and happy.I am very lucky to live by the sea and beautiful countryside. Kind regards to all you very knowledgable lot you have been amazing me for some time now and this was my first post 🤣🤣🤣🤣

[PMRpro Ambassador in reply to Seablue88]

Well hi and welcome now you have crawled out of hiding!!!!

[PMRpro Ambassador]

It is unfortuante that Long Covid and PMR can have very similar symptoms but it has also been noted that PMR triggered by the virus itself or by the vaccine, which also happens, tends to last less time than with other triggers of PMR.

You have done really well - I do hope it continues.