Lost, bewildered & alone!

[Aanneml]

Currently taking Pregablin until I can see another Rheumatologist. Not had support from anyone but my GP and a Facebook group.

[Constance13]

The title says it all! So sorry you are having to deal with this pesky illness all alone.

But, what am I saying? You are NOT alone - there is someone on the forum most of the 24 hours.

I'm one of the "oldies" and have had PMR for 8 years but, thank goodness, have a LOT of help. Don't despair - someone will be along in a minute who will be able to help.

Try to smile - when I look at myself in the mirror first thing in the morning I always have to smile. I didn't know hair could stand up in sooo many places!!

[Aanneml in reply to Constance13]

Thank you Constance13, this is the 1st time I've had any support. I'll be on this website a lot!

[Constance13 in reply to Aanneml]

I've been on it for six years and STILL have questions to ask!

[Seraphina56 in reply to Aanneml]

Just want to say that I have had so much solid advice and support from folk here. You’re in the right place.

[PMRpro Ambassador]

Do you have a diagnosis? Pregabalin isn't usually used for polymyalgia rheumatica, it is used for nerve pain and fibromyalgia which is a different illness although a lot of the problems are similar. I think we do have a few people on here with experience of fibro though.

[Aanneml in reply to PMRpro]

Yes, diagnosed by Rheumy Dec 19, discharged by the same Rheumy Feb 20. My GP has been trying to support me since and I'm waiting for Rheumy to start appointments to put me back on steroids.

[PMRpro Ambassador in reply to Aanneml]

Why can the GP not put you on steroids? Many patients are managed by GPs all the way through their journey.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Have replied to Aannemi’s second post - and advised returned to GP.

[PMRpro Ambassador in reply to DorsetLady]

So have I I think!!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Of course you have......obviously responding at the same time!

[PMRpro Ambassador in reply to DorsetLady]

And Snazzy - don't we make a brilliant team 😇

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Naturally 😊

[Amkoffee in reply to PMRpro]

I cannot speak for the posters reason for not getting treated by GP however my GP refused to treat me at all even though he's the one who diagnosed me. And I was forced to wait three months before seeing my rheumatologist and getting treatment.

[PMRpro Ambassador in reply to Amkoffee]

I think that is a US/UK difference - a lot of US PCPs seem very reluctant to do anything that could be said to be a specialist area.

[Amkoffee in reply to PMRpro]

That is true. It is frustrating because I have a specialist for everything wrong with me.

[PMRpro Ambassador in reply to Amkoffee]

In the UK these days you might, if you were lucky, be referred to an elderly medicine specialist - they specialise in complex patients, mostly older of course but not only. They also aim for quality of life rather than being focussed on cure at all costs.

[Amkoffee in reply to PMRpro]

I am always suggesting to frustrated people with undiagnosed symptoms to stop running from doctor to doctor for that label and instead look for whatever will help relieve those symptoms. A lot of chronic pain does not always have a fix regardless of the reason. So find a doctor willing to treat the pain.

[Constance13 in reply to Amkoffee]

We haven't seen you on here very much lately Amkoffee. Hope life is treating you and your family well considering the difficulties we ALL have. 💐🍀🍀

[Amkoffee in reply to Constance13]

I thought my PMR had gone into remission but it had not at all. I have chronic lower back pain and I started taking Excedrin for it in addition to everything else. That lowered my inflammation markers enough that I didn't recognize that the pain was PMR pain and not just my chronic back pain. I stopped taking Excedrin for a week and I realized it was PMR. I recognized all the symptoms instantly. I contacted my rheumatologist and my inflammation markers were extremely high. . So that's why I'm back here and it looks like I'll be here for the Long Haul. Thanks for asking.

[Constance13 in reply to Amkoffee]

Sorry you're back - but pleased to see you- if you see what I mean!!!😂😂😂😂

[Lyndaki]

You have my sympathy! Whilst my initial support from GP & hospital rheumatologist was great, my last appointment with him was in November 2019. I had bloods checked at GP In Feb because of long term steroid use (since Nov 2018) but my March hospital appointment was cancelled & remade for Sept....nothing to do with the Covid crisis. Because I have had recurring symptoms I called my GP last week to ask for a blood test & advice as I felt like I’d been left to my own devices re reducing dose. If I had gone by the hospital’s advice I’d be completely off the Prednisolone now! No chance. (Am swinging between 4 & 3 mg at moment but might have to stay on 4 a while longer) A friend suggested looking for a forum online & I found this one. It’s been a godsend! I’ve found out more since joining than I was ever told before & am eternally grateful for the interesting pieces published.

[tangocharlie]

This forum is SO much better than any Facebook group (I know because I'm on about 6 different ones). The information on here is 100% reliable and given by experts in the condition. Whereas on the Facebook groups everyone has their own idea of what to do - I try and correct nonsence on there every day. You're in good hands now

[Amkoffee]

Pregabalin is going to do nothing for PMR pain. The reason for this because it is medication used to treat nerve pain such as sciatica. It has no anti-inflammatory properties to it whatsoever. If it is working to help control your pain your pain may be caused by something else all together.

[Aanneml in reply to Amkoffee]

Hi, Pregablin isn't really doing anything for the pain apart from making me very drowsy and sleepy, that's why I'm off work!

[PMRpro Ambassador in reply to Aanneml]

If I were in that position I wouldn't take it at all! One thing if it works ...

[Aanneml in reply to PMRpro]

True, I took it last year when GP was trying all kinds of meds for me, it didn't work then either. I'm expecting the Rheumy to give a shot of steroids soon so I can come of Pregablin.

[Tamtan2]

I too feel like you do lost don’t know what to expect been on meds been taken off meds with no alternative this support group was also my first help in understanding gca/Pmr although I’m a good way off understanding the illness but beginning to realise it’s trail and error and depending on your own body for answers. Haven’t seen rhuemy since March and think I have had a relapse as my head is sore lumpy and Pmr symptoms have returned on 20 mg prednisone. Going for a gastroscopy Monday then to see respiratory doctor due to side effects. Take care keep asking questions. 🙏🏽

[Aanneml]

Good luck Tamtan2, I agree, its trial and error a frustrating process to go through.