An update

[WNBTHurs]

A belated update on the pains in my legs at top of thighs that felt like electric shocks. The Doctor has now diagnosed me with fibromyalgia as well as having PMR and has upped my dose of amitripiline which has helped with the pain. The doctor then said reduce your steroid by 1 to 7mg, as I stood in tears because of the pain I found the strength to refuse and say with everything going on I am staying where I am until the pain settle down .I couldn't believe they said that and want me to still rush down to zero pred but thanks to the wonderful people on here and advice given I knew reducing whilst in pain was definitely not a good idea.

[SheffieldJane]

well done for standing up for yourself. We do have to resist some ill founded medical advice. I wouldn’t be reducing whilst so symptomatic and when I did it would be slowly

by half a 1 mg tablet. Arm yourself with a read of FAQs accessed on this page under tapering.

[WNBTHurs in reply to SheffieldJane]

Thanks SJ, I was lucky to find this site been on this journey for nearly 18 months now and I don't know what I would have done without it. I have read everything so knew reducing now was not a good idea, I just wish doctors were more informed about PMR it would make it easier for us that have it. When I feel ready I will start a very slow tapering following DL recommendations although I know doctor won't be happy but I am not going to be rushed.

[SheffieldJane in reply to WNBTHurs]

Yes less confident and more informed rather than less informed and more confident. I am even sceptical whenever the Fibromyalgia diagnosis comes up. The place where they sweep the “ I don’t knows” often.

[Longtimer in reply to SheffieldJane]

You are so right about Fibromyalgia diagnosis, it’s a cop out when they don’t know what’s wrong with you, I am still battling on!

Hope things have eased for you.

[WNBTHurs in reply to Longtimer]

Thanks Longtimer, your right it can be a battle things have eased slightly and I hope yours does soon as well.

[Longtimer in reply to WNBTHurs]

Mine is complicated, having had a scan it showed no inflammation, so it was decided it must now be Fibromyalgia. I cannot move about without at least 5 mg pred, strange because Fibromyalgia isn’t supposed to respond to steroids! I wake up with a tremor, pain ( not nerve pain) very heavy fatigue, horrible blurred vision, so not too independent, which really gets to me! After Christmas seeing a Neurologist, I won’t give up looking for answers. Hope things get better for you.

[Nextoneplease in reply to Longtimer]

Good luck Longtimer ☘️

I hope things improve for you soon xx

[Longtimer in reply to Nextoneplease]

Thank you.

[PMRpro Ambassador]

Just because you have fibro doesn't mean you haven't got PMR - there are quite a few on the forum with both!

I'm also sceptical about a fibro diagnosis - if in doubt ... But if the amitryptiline works, that's good.

[WNBTHurs in reply to PMRpro]

Thanks PMRPro, like you say not sure when they don't know what it is but the amitryptiline has helped and let me watch up on some much needed sleep.

[PMRpro Ambassador in reply to WNBTHurs]

If all it does is help the sleep problem that is still a positive.

[piglette]

The trouble is it is not their pain.

[WNBTHurs in reply to piglette]

I know piglets, I consider myself a glass half full person but to be honest I felt broken with pain I the doctors office. Glad I stuck to not reducing the pred.

Thanks everyone for taking the time to 'listen'.

[piglette in reply to WNBTHurs]

I often think we know more about our pain than the medical profession.

[PMRpro Ambassador in reply to piglette]

There is no arguing that we know WHERE it is, HOW BAD it is and what makes it better!!!!

[WNBTHurs]

I agree but it has taken me a year or so to realise that with the help from here.

[Jackoh]

The electric like shock waves in my leg and feet were for me peripheral neuropathy and were definitely helped with amitriptyline. Good for you for stand your ground literally and metaphorically!! Xx💐

[WNBTHurs in reply to Jackoh]

Thanks Jackoh, I will look up peripheral neuropathy but just glad I got some pain relief.

[Schrodie]

My Rheumatologist tried to tell me I had Fibro, as I was still in pain while reducing, I was at 7mg Prednisolone last November and she wanted me off the steroids and onto the amitriptyline. She kept telling me, that she would get into trouble with her boss, and other departments in the hospital if I stayed at such a high dose of Steroids!

I'm not saying that you don't have Fibro, you may well have, but as there is no test for it and it doesn't respond to steroids it is an "easy" way to get you off the steroids and onto other medication, usually without question.

I was able to get a second opinion, as I felt I was being bullied, and when I read up on Fibro, it didn't fit most of my symptoms. A year later and a much slower reduction plan, listening to my body, I am down to 3.5mg with no other steroid reducers. Its not an easy journey, and I'm not there yet, but when I look back on how I was a year ago, I am a lot better than I was. I wish you all the best, you are the one who knows your body the best

[WNBTHurs in reply to Schrodie]

Thanks Schrodie. From this site I understand PMR a lot better than I did a year ago and the fibro diagnosis has not thrown me as much as the PMR did whether it is or isn't. I totally agree with you about knowing our own bodies and reducing pred when we feel the time is right and not being pushed into doing it sooner, thanks to all the information on here.

[Pixix]

I have both fibromyalgia & PMR. Steroids don’t help with my fibro at all. I have managed to taper to 1mg after five years, but it’s been difficult. I take amitryptylline every night, but if I take the recommended dosage I don’t get out of bed in the morning! Sometimes, it’s a compromise! There is a fibromyalgia forum. I joined one for a while, but to be honest, I found people just moaned about aspects of the disease that can’t be helped, & that was all! There are other drugs which help fibro, so do go back to the Dr if you’re suffering still. And, yes, I get the electric shocks most nights (unfortunately I am unable to take the fibro drugs! Take care!

[WNBTHurs in reply to Pixix]

Hi Pixix, it's good you are down to 1mg pred and your right about it being a compromise.I am just making sure I am not doing to much as I don't want a flare to start, the amitryptytiline has helped although like you say can affect getting up in the morning! Hopefully things will settle down soon but it's reassuring you tapered down to 1mg whilst having fibro.

[Pixix in reply to WNBTHurs]

I was diagnosed by my GP, then four different consultants in 3 different hospitals…who I’d gone to see for other reasons (not PMR, either)! They should prod you in at least 20 places on your body & watch for reactions. If you shriek loudly at at least 11 of them, then you have fibro. That’s how I was tested each time! I take Amitryptyline for problems due to osteo arthritis & hypermobility. I get a lot of muscle spasms & electric shocks, & it allows them to relax & I get off to sleep better. To counteract the ‘not being able to get up’ bit, I take it at 6pm. You may not need to take it that early, but it doesn’t have to be 10/11pm bedtime!

[WNBTHurs in reply to Pixix]

My GP and their specialist physio diagnosed me after lots of prodding and checking, I also have hypermobility and osteoarthritis and just been measured for a left knee brace. That's a good tip to take at 6pm as I normally take it at 9pm, thanks.

[Pixix in reply to WNBTHurs]

Sounds like they know what they’re doing, that’s excellent! First of all, I’d try taking it at 7pm, instead of 9pm, then earlier, if necessary. It’s a balance, really, & you’ll soon find your best time.

[PMRpro Ambassador in reply to Pixix]

Except as I point out, before my PMR diagnosis I reacted to more than 11 of the so-called fibro trigger points. But almost total relief in 6 hours to 15mg pred. Definitely NO fibro.

[Pixix in reply to PMRpro]

11 is on the cusp, though, my latest test was 16 out of 18, & the others were all 18 out of 18…& they threw in quite a few dummy ones, too!

[PMRpro Ambassador in reply to Pixix]

I still think a short course of pred should be part of the diagnostic process!

[Longtimer in reply to PMRpro]

Definately!

[Pixix in reply to PMRpro]

Could be, I guess. For me, the two things presented so differently & came 12 years apart & id been on lots of short courses of pred for chest infections about a year after fibro diagnosis…& they didn’t help the fibro at all!!

[Longtimer in reply to PMRpro]

Did they try to prescribe you Fibro meds?

[PMRpro Ambassador in reply to Longtimer]

No - I had done the poking and said it COULD be either on that basis but I didn't think it was fibro for other reasons. The GP referred me and actually, the rheumy never mentioned fibro that I remember.

[Longtimer in reply to PMRpro]

It’s all about getting the correct diagnosis. It amazes me the huge amount of people of all ages suffering from Fibromyalgia that more research isn’t done.

[Bramble2000]

I’m also sceptical about the Fibro diagnosis. Problem being that doctors often diagnose this when they’ve run out of ideas. Have you considered Meralgia Paraesthetica? X

[WNBTHurs in reply to Bramble2000]

Hi Bramble, no not considered but I will luck it up as not heard of it before. Agree re it can be diagnosed as they don't know what is causing the pain but with the tablets it has settled down a little so that's something.

[Missus835]

As PMRPro has said, we can have both, as do I. Also have severe osteoporosis. Unfortunately, I have a GP who insists I reduce and allows me only enough Pred for 28 days at the particular dose of the month. So, I go down by .5 for two weeks and the other .5 for the next two weeks. In a lot of pain, all of the time. Kudos to you for sticking by your guns.

[WNBTHurs in reply to Missus835]

Hi Missus, thanks it was hard as I was crying which is so unlikely me but to be fair I feel like I don't know who me is at the moment. Like you doctor only prescribes 28 days of pred at a time so it can be a challenge to stick to your guns. Hope your pain improves and you get a little relief soon.

[Missus835]

I feel you. These diseases have invented a whole new me. I do find with the fibro dx that GP now has something to deflect to, in order to justify the quick taper. She says I will thank her in the end. But what if the PMR isn't gone into remission and when I ask for bloodwork, she either says I don't need it or acts like she doesn't know what I'm talking about....maybe she doesn't. I'm so frustrated, as I'm sure are you. 🫂

[Waverley63]

Hi

For months I’ve had a pain in my left thigh, I’ve been to Nuerology who found nothing, I also had what I call a heavy left arm. I too have been diagnosed with fibromyalgia and am on the waiting list for IPASS clinic. They put me amitripiline but I have taken any as they didn’t really do anything. I have looked on u-tube and have been doing exercises for a pinched nerve and this seems to have eased the pains in my thigh, they haven’t totally gone away but some days I don’t feel any pain at all. I do get other random pains in my legs and seem to have picked up IBS but my pain level has dropped and I’m sleeping so deeply recently.

[WNBTHurs in reply to Waverley63]

Hi Waverley.Interesting re YouTube, I will have a look and search pinched nerve and see what comes up. I have been referred to physio but I imagine it will take quite a while before I hear anything. Thanks for the info.

[Brooklyn747]

I was treated by my local doctor for 3 months insisting I had fibromyalgia despite me repeatedly saying the non steroidal inflammatory meds didn't work....because my blood markers were not elevated at that time. Honestly doctors are not infallible and often aren't the best of diagnosticians, so good on you for standing your ground.....go girl!

[WNBTHurs in reply to Brooklyn747]

Thanks Brooklyn, glad you were diagnosed eventually and hope you are doing OK.