Well I'll be damned!

[Groovykindoflove1992]

Well, as a follow up to my post 3 weeks ago, I had my Rheumy appt. this morning.

She spent ages with me. I told her all my woes, and she thoroughly examined me. I must've have yelped loudly about 20 times 😖 She went through all of my symptoms one by one and said she had come to the conclusion that I have Fibromyalgia and not Polymyalgia. The greater trochantric pain syndrome I have and problems with various other joints is as a result of hypermobility. She explained everything to me really well. I burst out crying when she said I hadn't needed to be on Pred for the last 2 years after all. I was so upset as it has made me feel so unwell and caused me so many problems over those 2 years 😞 She gave me an injection in each trochantric bursa, told me I didn't need to take Alendronic Acid etc anymore. She has upped my dose of Amitryptiline as I've hardly slept for the last 5 weeks and I'm exhausted 🥱😴I am 4 stones heavier than I was, 3 of them put on in the first 12 weeks of pred, and I have high blood pressure, never having had it before all this started. She says she's not worried about this as it's been caused by the Pred and the double dose of Celebrex each day. I've had my cholesterol checked which is nice and low, and a few other things. I came away feeling quite positive overall and that there is a little chink of light at the end of the tunnel for me, but I really feel like I am in mourning over the Pred malarkey 😭My new 'regime' is 15mg of Lansoprosole first thing, then 100mg of Celebrex morning and evening, with 50mg of Amitryptiline, upping that to 75mg in 2 weeks time, about 2 hours before bed. Let's see how I go!

[piglette]

Did pred ever work for you? As it does not touch fybromyalgia.

[Groovykindoflove1992 in reply to piglette]

It did, yes, at 20mg. It got rid of all my knee/hip pain too. It was a miracle. However, I was dropped down to 15mg after 2 weeks and all the pain returned. I yo-yo'd up and down for a good while before seeing the rheumy. I'd suffered for 6-7 years prior to phoning the Dr when things escalated. Looking back, I'd not long lost my Dad, and I had a nasty fall at work, which I didn't add into the equation when it all got so much worse 💁‍♀️

[Groovykindoflove1992 in reply to Groovykindoflove1992]

So, to cut a long story short, it only worked for 2 weeks!

[piglette in reply to Groovykindoflove1992]

I was dropped from 20mg to 15mg and it was a disaster too. I blame my yo yo-ing because of that caused problems. I had a rheumie who wanted me on 10mg in double quick time. It is strange you had such a good result initially. I wonder what the steroids were helping?

[Groovykindoflove1992 in reply to piglette]

I think they helped the pain and inflammation from the hypermobility. It affects the muscles, tendons and ligaments around my joints 😕

[Pixix in reply to Groovykindoflove1992]

I agree…I’ve only been diagnosed with hypermobility for 3 months, but discussing it with the doctor I can see it was there throughout most of my life…jaw dislocations, huge cracking noises & pain in thumbs,toes, other joints were starting to dislocate, popping back in. When I was on 15mg the osteoarthritis pain went away…but who would want to live on 15-20mg daily for rest of life…& it wasn’t a complete cure, just a temporary relief! I’ve also put on 3 stone, so can sympathise…oh & I also have fibromyalgia, but I’ve had that about 15 years now (& found it much easier to live with than PMR!) I had worse inflammation markers from OA (& prob hypermobility!!) than when I started PMR! Good luck, S x

[Groovykindoflove1992 in reply to Pixix]

Thank you! I feel a lot calmer about things today. I can get my head around things a bit better. Hubby and kids (son 19 and daughter 17) have been so good through all of this and I am so grateful for them. Hubby's always said I am the calm one who keeps us all together and everything running ship shape, but it's been a bit different for the last couple of years. Been hard to let go, but I haven't had to change a bed or hoover etc for a long time and daughter loves to cook, but I still organise us! I know they'll help me with the weight loss side of things. I feel in a position to help myself a bit more too 🤞

[Pixix in reply to Groovykindoflove1992]

Good news! I went on the 5:2 diet…now updated as the fast 800 diet, & lost a stone & kept it off…until I had new health problems & had to go back to 10mg…& currently lost incentive…but will be back dieting soon enough! Oh, I take amitryptylline, too, for muscle spasms, and take it by 7pm each night…or I’m even more of a zombie in the mornings, as Mrs Nails suggests timing it right below! S x

[Karenjaninaz in reply to Groovykindoflove1992]

Do you have Ehler Danlos syndrome? It’s a different autoimmune disease characterized by hyper mobility.

[Flutterbies57 in reply to piglette]

Pred helped all of my pains for the first few days , then Fibro pains returned , but PMR pain disappeared within 24 hours

[Groovykindoflove1992 in reply to Flutterbies57]

I felt 50% better within 2 hours of my first dose of pred and within 24 hours I was 100% pain free!

[Nextoneplease]

Well, yes, what a situation!!! I think in your bio you say you felt pred helped??? I’m confused…..hope the new medication regime works well for you 🤞xx

[Groovykindoflove1992 in reply to Nextoneplease]

Thank you 😊

[SheffieldJane]

Good luck with your new regime. Don’t look back, it’s done, here’s to a better future.

[Groovykindoflove1992 in reply to SheffieldJane]

Thank you so much 🙂

[HeronNS]

As fibromyalgia is not an inflammatory disease, how did she explain the high inflammation markers you told us about in your earlier post?

And be very careful of taking Celebrex for long. It has some serious side effects of its own (e.g. serious gastric problems), but if it gets you started in the right direction, good enough!

[Groovykindoflove1992 in reply to HeronNS]

Rheumy says it's from the inflammation in my muscles/tendons/ligaments caused by the hypermobility. I've been on Celebrex for about a year, since she suspected there was something mechanical going on as well. Then she doubled the dose and doubled the Lansoprosole to protect my stomach and told me to stop taking it if felt any abdominal discomfort.

[HeronNS in reply to Groovykindoflove1992]

Interesting . Do let us know how you get on. All the best! 🌼🍀

[Groovykindoflove1992 in reply to HeronNS]

Thank you 😊

[MrsNails]

Hi, re the Amitriptyline - l find & was advised by a Dr to take the Amitriptyline around 7pm - it takes a while to kick in but taking it around 7pm prevents that hangover feeling the next day.

What’s happened re the Pred had you already stopped it or are you tapering?

Good Luck

MrsN

[pata63 in reply to MrsNails]

I picked up that Amil-tip 😉from you, and it really helped that hangover felling. I shared it with another friend and she found it helped as well. I think we're on to a good thing.

[MrsNails in reply to pata63]

That’s the beauty of the group 😉 How’s the flare, is it settling?

[pata63 in reply to MrsNails]

The pain is gone but I'm still having to take it easy. Went to yoga on Monday, but skipped the gym class today and just walked to the shop to buy a couple of things. Then I had a nap in the afternoon for an hour.

[MrsNails in reply to pata63]

It takes a bit of recovering from - l ironed three pairs of linen pants so l was very impressed with myself 😉

[Groovykindoflove1992 in reply to MrsNails]

I've never had any issues with Amitriptyline, ie hangover feeling next morning. Had 50mg last night and slept like a baby for the first time in 5 weeks. Bliss! Knees and other joints are much eased this morning, possibly from steroid jabs yesterday? I had my last pred at the end of March. Had a few adrenal issues and was sent to A&E about a month later with a chest infection that my hubby and son had mildly, but made me feel dreadful! Phoned 111 to see if I should maybe take a bit of pred re sick day rules, saw an out of hours Dr who sent me to A&E with high BP and a heart rate of 153. Hospital never answered the question about pred, but had a beta blocker and a bag of fluids, spent 12 hours on a crazy ward and then went home. Think things have settled a bit now on the adrenal front 👍

[HeronNS in reply to MrsNails]

I was curious too and I did find looking at her previous post that GKL had been off pred since March, and .... symptoms worsening since then. 🤷‍♀️

[Knip]

We are all different and many of us have a mix of different symptoms and ailments. The great news is that it sounds as if you starting out as if from 'scratch', and that you are doing this in a very positive frame of mind. Having temporarily taken Amitryptaline many years ago, early on my journey, I was told to take it early evening by a retired pharmacist, who took the trouble to discuss my various drugs with me. Inflammatory markers can be raised by other issues not just by long term conditions. I hope you'll keep in touch and let us know how things are going with you. God Bless, K.

[Groovykindoflove1992 in reply to Knip]

Thank you so much 🥰 Yes, I think those markers can be affected by weight too. Rheumy said that my markers are probably just my norm as they've been the same all the way through this. Not sure about that bit, but aving bloods done again in 3 months 💁

[Flutterbies57]

I was diagnosed with Fibromyalgia 20 years before I woke in the night with horrendous new and different pain in the upper and lower body zone . This new pain was diagnosed as PMR. On 20 mgs pred all pains disappeared for 5 days then the typical, consistent Fibro pains returned , but the new stiff, debilitating pains went . I have just had a flare. The PMR pain is very different from the fibro pain I continually suffer from . As soon as I upped my pred , the PMR pain settled again . I have been aware for many years that I am hyper mobile, and I have been diagnosed with Ehlers Danlos, a genetic hypermobile condition . I have never been given any drugs for Fibro. I had to learn how to deal with it myself , which I have done with Osteopaths , Chiropractors and stretches . I just had my first treatment to try and stabilise my ‘loose’ hip joint but then covid hit . I have been able to cope with Fibro pain , but I would never have been able to cope with PMR pain without pred . I do hope your new medical journey will be a successful one . Please keep us updated about how you are going.

[Groovykindoflove1992 in reply to Flutterbies57]

Than k you! Yes, Ehlers Danlos was actually mentioned early on, but I don't have any skin issues and my joints have never been so hypermobile that they have dislocated or anything like that.

[Flutterbies57 in reply to Groovykindoflove1992]

In the early days when I went down with Fibro I decided to get fitter. I enjoyed it for about 6 months then the joint problems started and have never stopped . I constantly have to b put back together.

[Groovykindoflove1992 in reply to Flutterbies57]

I had been doing Slimming World and had slowly and carefully lost 4 stones over 3 years. I walked every single day come rain, snow, xmas day, hols etc but was starting to feel pain at the end of my walks. I upped the length and pace of my walks thinking I must need to get fitter but was walking like an Egyptian mummy and someone was having to take my trainers off when I got back and help me to the sofa where I woul zonk out for an hour. I then twigged that something must be up if I was struggling to even go for a walk!

[marionofnorwich in reply to Groovykindoflove1992]

Egyptian mummy, I like that. Good description, though I feel more like one of those wobbly windup toys that toddles along on two feet by also swings from side to side - know what I means?

[Groovykindoflove1992 in reply to marionofnorwich]

Yes, one of them 'n' all 😆

[Flutterbies57 in reply to Groovykindoflove1992]

I did the same . Rail , hail or sunshine . Every single day . I loved it until I started falling apart . I never once felt like I had overdone it tho.

[Groovykindoflove1992 in reply to Flutterbies57]

It just makes the whole thing even more depressing when you feel like you literally can't do anything. Not even walk 😑

[PMRpro Ambassador in reply to Groovykindoflove1992]

You can say that again! I walked every day all winter - came the spring and I couldn't walk to the village without making things worse!

[Groovykindoflove1992 in reply to PMRpro]

I think Drs and Rheumys think we don't try and help ourselves, but they don't live with this horrible thing do they 😡

[PMRpro Ambassador in reply to Groovykindoflove1992]

Nope - maybe they need to ...

[Groovykindoflove1992 in reply to PMRpro]

I've seen in the news about this menopause vest that mimicks what it's like to have hot flushes. Imagine what a PMR one would look like! It would have weights in it, tight bands, spikes and all sorts 🤣🤣🤣

[PMRpro Ambassador in reply to Groovykindoflove1992]

There is one, sort of - except it is to mimic aging.

wbur.org/hereandnow/2019/06...

Should be supplied together with a copy of Helen Twohig's paper "I suddenly felt I'd aged"

core.ac.uk/download/pdf/302...

[Groovykindoflove1992 in reply to PMRpro]

It's just missing some spikes 😆 Both very interesting reading though 👍

[Pr0jection]

I was diagnosed with fibromyalgia by the first rheumatologist I saw. I didn't think to question it because my mother had both polymyalgia and fibromyalgia. I was told to take anti inflammatories and pain killers. This I did until I was diagnosed with PMR by another rheumatologist several years later after experiencing awful pain for 4 months. As a result I became allergic to most anti inflammatories. On the plus side after 2 days on prednisolone I had my life back. Glad that you have been finally diagnosed correctly. Wish you well, and keep us posted.....x

[PMRpro Ambassador in reply to Pr0jection]

Why would you use antiinflammatories in fibro? It isn't an inflammatory condition.

[Pr0jection in reply to PMRpro]

No idea, but as she diagnosed me incorrectly anyway who knows?

[PMRpro Ambassador in reply to Pr0jection]

My mind is having a right boggle!!!!!

[Pr0jection in reply to PMRpro]

Sadly there are only two rheumatologists left in our town now. The lady who misdiagnosed me, and mine who wants me to just 'come off' prednisolone in a year's time because he says that my PMR will be gone (he must have a crystal ball). Thankfully my GP is very supportive so I will probably ask her to monitor my future progress. Thank goodness we have this support group......

[PMRpro Ambassador in reply to Pr0jection]

Ah yes - those famous crystal balls. Usually very cracked ...

[Snowy12]

I have also been told what they said was GCA in 2019 when I was started on 60mg pred is in fact fibro. I am very angry that I’ve been battling to get off pred for the last 3 years and it has also left me with high blood pressure and diabetes. Every time I got down to around 15 I would be in agony couldn’t even roll over in bed. They said it was because my adrenal glands weren’t working or that I had steroid withdrawal symptoms. I finally took my last pred on 8th May this year and I’m on pregabalin 200mg and mitarzapine alongside all the blood pressure and diabetic tablets I now have to take. It was a GP who had just returned from maternity leave who diagnosed fibro. I had taken time off work again as was not sleeping at all, in terrible pain stiff in the morning feels like my body’s been pumped with lead over night. The rheumatologist I’ve been seeing regularly for the last 3 years did some pressure tests on me and confirmed the diagnosis she handed me a leaflet and said good luck! I also cried when I was told I had fibro and the GP pointed me to a website and as I read each symptom I could tick every single box. I asked the rheumy if it could have been masked by the pred she said it’s possible. Still in pain all day the pregabalin is helping me sleep but the pain is constant and doesn’t go away.

[PMRpro Ambassador in reply to Snowy12]

Even bigger boggle as I try to imagine how fibro could be confused with GCA!

I do see how it can be confused with PMR because when I was researching what it was I had that my GP claimed couldn't exist as my bloods were normal, the fibro trigger points were borderline. But in the end 15mg pred sorted it all - suggesting it was NOT fibro. The trigger points I have all overlap the myofascial pain syndrome trigger points which is common alongside PMR.

[Groovykindoflove1992 in reply to PMRpro]

It's no wonder our minds boggle, is it! The stress of wondering what we might have isn't good, then ticking all the symptoms boxes of various illness/conditions makes you convinced you have about 20 different things wrong with you 🙈

[Whippetygirl in reply to PMRpro]

I love all the boggly minds on here, you couldn’t make it up could you.

[powerwalk]

You could have had PMR too? I have both. Had the fibro first. Best of luck with your new regime. At least you're done with the pred! Let us know how you get on. Best wishes I hope your pain eases for you.

[Groovykindoflove1992 in reply to powerwalk]

Thank you 😊 Yes, I suppose I could have!

[Snowy12]

Thank you for your kind words. My initial symptom was right side scalp pain. It seem to improve with pred for a good few months then came back and they’ve tried me on loads of different epilepsy drugs over the last 3 years none of which helped and then I couldn’t get off the pred.

[MiloCollie]

Oh I bet you feel loads better just for all that. Nobody wants PMR or pred or fibro but half the battle is knowing what you’re dealing with. Hope you start to get some sleep now. 😎

[Groovykindoflove1992 in reply to MiloCollie]

I slept like a baby last night for the first time in 5 weeks 😴

[Harrywogan]

Wow,Groovy what a trip you've been on,Iam not under a Rheumy just Gp and everyone can make mistakes so please for you,I THINK but fibromyalgia not so good either but at least no Pred. Take Care Harry

[Groovykindoflove1992 in reply to Harrywogan]

Thank you Harry. Yes, I find it strange that I am pleased myself 😆 I'm not angry with my Dr's diagnosis of PMR in 2020. I had the right sort of symptoms at that time, my blood markers were raised and I responded brilliantly to pred 💁‍♀️ I am grateful that I don't have anything life threatening and can hopefully help myself to improve myself 🎉🤣

[HeronNS in reply to Groovykindoflove1992]

Well from all I've read fibro would not have responded brilliantly to pred so it appears, for whatever reason, you did need it at that time. I think a lot of us have quite ambivalent feelings towards pred, especially if we have some negative reactions to it at higher doses. (Fortunately for me my reactions were all "hidden" - increased ocular pressure, increased blood sugar, possibly bone thinning but as I didn't have a pre-pred baseline I have no proof of that, and later some muscle weakening, but that could also be explained by aging.) You might enjoy an account I wrote back then:

healthunlocked.com/pmrgcauk...

[Groovykindoflove1992 in reply to HeronNS]

Ha! That is brilliant! You are so desperate for some kind of relief at your worst that you will grab anything offered. I knew pred was bad after watching my Mum on it when she was in the early throes of RA, but I didn't care and I was elated as I knew I WOULD be getting some relief!

[HeronNS in reply to Groovykindoflove1992]

Of course I haven't yet reached the end of the story. I take around 2.5 mg a day now. So, "long PMR"! Had looked up my symptoms on the internet and came up with PMR (which I'd never heard of) and when I saw it was treated with steroids I actually dismissed the idea because I was so sure I could never have anything serious enough to need that kind of medication, and forgot all about it. Several months later, you're right, I accepted the treatment (not without questions, even then in the state I was in) and have never looked back.

[Groovykindoflove1992 in reply to HeronNS]

I only knew about it because of my Mum, but had never heard of it before then. She was initially treated for PMR when it was actually RA.

[HeronNS in reply to Groovykindoflove1992]

I hope she did well after proper treatment. I have a cousin with RA and truth be told, I'd rather have PMR! i do have osteoarthritis, however, which after decades of not being much of a problem, is beginning to affect me quite severely now. One thing after another. Oh well.

[Groovykindoflove1992 in reply to HeronNS]

Yes, it's so painful and destructive, but she's a trouper. She's had a tough time over the years. Bleeding ulcers, blood clots and all sorts, and all caused by various medications. She's been on Methotrexate for 30 years and Enbrel. She was my Dad's full time carer after he had a major stroke. She'll be 90 next year!

[DrRon]

I am super glad for a clearer diagnosis and prognosis for you Groovy, and the relief that this brings for you. But at what dose Pred are you and how will taper that?

[Groovykindoflove1992 in reply to DrRon]

Thank you ☺️ I finished tapering off pred at the end of March. It wasn't doing anything for me and hadn't for a long time. I was on it for 2 years, but only ever had relief from my symptoms for the first 2 weeks at 20mg 🙄