Fybromyalgia or polymyalgia

[Uglow]

My daughter saw Gp today with terrible pain in hips arms and she couldn’t finish her ablutions in wc or brush her hair without awful pain. She was diagnosed with fybromyalgia but has not been treated. She told them about me and they said as her markers were not up on last bloods they would do again. She said could she try steroids as she was a member of this group. Omg no no no you are too young 42 you don’t get poly at your age. She is suffering like crazy. Please can I have your take on it all. She has to wait for new tests and said it could be up to 12 weeks. I don’t think she will cope. She is so tired. Help needed.

[cycli]

Just because they think she is too young doesn't mean she can't have it. They should do the tests and if the symptoms don't respond to anything else why wouldn't they try pred. for a week to see if there is an improvement? I hope you can persuade your GP to take this approach. Maybe someone has a better suggestion as I still know so little .

[Seacat30]

Can you say how this started and how long she has been like this now? Does the pain vary at all with time of day or how active she has tried to be? Is she stiff as well as hurting?

[Uglow in reply to Seacat30]

She’s as stiff as a board all started about 5 months ago

[Seacat30 in reply to Uglow]

Oh dear she has been suffering for ages! Did anything in particular seem to set her off?

[Uglow in reply to Seacat30]

Tbh not sure but actually thinking about it it’s been way before my diagnosis in February. She woke up one morning paralysed couldn’t move. Then slowly got herself out of bed. I knew something wasn’t tight then and she saw a Nurosurgeon to rule out other things. Couldn’t find anything then said she could have had long covid even though she never had covid. They don’t antibodies test none found. Then in about august got Covid. And was hospitalised. Her rhumi said fybro but no treatment only amitriptaline. Still on pain every day

[Seacat30 in reply to Uglow]

I don't know enough about fibromyalgia to know whether it just hits you suddenly like that? I believe PMR can and does?

[Flutterbies57 in reply to Seacat30]

Mine hit suddenly , but I was suffering writer cramp for months before . I decided to get fit while off work, then a couple of months b later , pain all day , everyday for ever .

[PMRpro Ambassador]

She will come up against the age thing and they will say fibromyalgia - unless they find raised blood markers which means whatever it is, it is inflammatory so it cannot be fibromyalgia. However - some doctors just won't accept that. But if it is fibromyalgia - she will have to learn to manage the pain and fatigue as there really isn't a good way of treating it and relieving the symptoms. PMR is preferable in that sense.

The doctor is perfectly correct to be doing all the other tests are there are a load of other things that will cause similar symptoms and some of them are far more of a concern than PMR. Many of them will respond to pred - it isn't a way of diagnosing or confirming that you have PMR rather than anything else despite what you often see written,

[piglette]

The main factor needed for a fibromyalgia diagnosis is widespread pain throughout your body for at least three months. PMR tends to be bilateral and normally not through the whole body. There are other things it could be for example MS, ME and rheumatoid arthritis and even depleted vitamin D amongst other things. Blood tests will be needed of course. Has she been offered painkillers? Normally if they work it is probably not PMR.

[Uglow in reply to piglette]

Iv told her to try psin killers and monitor herself

[piglette in reply to Uglow]

Perhaps something like Tramadol. A friend takes them for fibromyalgia and they help her. I don’t know if she can get anything like that prescribed?

[Kielyc]

First of all I’m 40 , 41 next month lol .. only kidding.. todays hip pain has been a killer tbh the worst it’s been in a while a precious x ray months ago shows nothing. My bloods have never shown any inflammation. It’s so frustrating I feel like a 80 year old most days first thing and last thing is particularly bad. I try most days to ignore and try and push through I am a bit of a drama Queen with most things but this is definitely something I’ve never had before symptoms particularly worst since coming home from hospital with covid in august it’s being exesperated almost. My GP prettyMuch said if it is fibro that’s it not much we can do which tbh made me have the saddest day I’ve had in a while. Any ideas on what is best pain control would be fantastic.

[Flutterbies57 in reply to Kielyc]

My bloods have never shown that I have Poly. , but steroids r the only thing that gave me some relief.

[madhouse1 in reply to Flutterbies57]

Me too x

[cycli in reply to Kielyc]

Kielyc.sorry but it sounds as if you could also have PMR and the doctor needs to at least consider the possibility. If nothing else reduces the pain and pred. does it is an undicator. You need further tests to determine as far as possible what else it could be. I hope you can use the information from here and some persuasion as dr.s and consultants still seem stuck with their theories even inthe face of concrete evidence to the contrary.

[Uglow in reply to Kielyc]

😂😂😂40 omg you look so !!!!! Beautiful my fantastic lady. I love you and Iv struggling to watch your pain as I really do get. At least we have each other to hold us upright and this amazing group who will be able to advise you. Let’s home docs decide what’s happening to you ASAP. My girl xxx

[Betty_H in reply to Kielyc]

I haven't been on in a while, but when I was in my 30s (30 years ago) I was diagnosed with fibromyalgia. The best thing the doctors did for me was to teach me self relaxation techniques. The amitriptyline may help in the long term, but it can take a while. And it may not work at all. Find a recording of a progressive muscle relaxation exercise. Listen to it every day, maybe even twice a day. I still have some fibro symptoms off and on, but the good thing about it is that it does go away. Do you have the always present tender points on your body? If not, its not fibro. Hope you get better soon.

[Flutterbies57]

Uglow , I w as diagnosed with Fibromyalgia 26 yrs . 8 years ago I was deteriorating and I did not know why . One night I suffered excruciating pain in neck and knee which was so different from anything I had suffered before . It took me 15ish minutes to turn over . I went to chiropractor as usual . Timing was terrible , I had to see a new one as my old 1 was pregnant . I thought he was hopeless . 2 weeks later he insisted I see a Dr as he thought I had Polymyalgia . We don’t have the tests u hav in Britain . Dr said try steroids and see if they help . I researched Dr Google till my finger couldn’t cope and tried natural things . A month later I couldn’t live with the pain and almost begged for the steroids. Within less than 24 hours I had soooo much relief . Sadly I didn’t realise there r 2 types of steroids . I had 1 week of no pain after 18 years . I was beside myself with joy , then I thought I could move mountains . I did …..tons of soil and rocks . A week later I was back where I had been for 18 year , but the excruciating , unbearable new pain in neck and knee area had gone . 6 years later I am down to 1mg of prednisone . I could not have lived with the Pain without Pred . My Fibropain pain has now been rediagnosed with Ehlers Danlos . I was 65 when Poly struck . I hope yr daughter finds relief

[PuttyPenguin]

I don't pretend to be an expert but I do know that my step-daughter manages her fibro with painkillers. Painkillers do not help my PMR only steroids. That to be is one of the big differences between managing to two.

[Broseley]

A friend who has been living with fibro for 15 years got sent on a pain management course, 3 week residential (she lives in Wales). It helped enormously. Might be worth asking about.

[Alazarin]

A friend of mine was diagnosed with Fibromyalgia at the same time as I was diagnosed with PMR, GCA. Her symptoms were similar but different, she was offered amytriptelene. She does gentle yoga to keep mobile and has regular massage. Otherwise rest and pain killers.

[Nightingales]

That’s awful. I don’t understand, if she has been diagnosed, why she isn’t being treated for fibromyalgia. Take a look at the NHS site nhs.uk/conditions/fibromyal..., why would she have to wait 12 weeks for tests unless it’s ultrasounds or other imaging. But she needs treatment in the meantime anyway. Back to the dr ASAP I think.

[AncientMariner]

Never assume they know best, they stick to Orthodoxies worse than any evangelist you could meet, they know much but not everything. I was repeatedly told that I was too young at 53 to have GCA and I knew that was drivel and used to retort "There is always a first" well after 18 months a Rheumatologist took the time to listen to my family history of chronic Arthritic conditions including blindness in my Paternal Grandmother's case and diagnosed me with GCA. I am blind in one eye because of it and A+E didn't think it was GCA when I went in because of my age and I wasn't having headaches, I wasn't, I was having an overall intensity of pressure in my head and my willingness to be accurate and their medical orthodoxies in my opinion cost me the sight in one eye as they thought I was having a stroke and didn't give me IV steroids for nearly 24 hours. Allway's challenge, politely, but challenge.

[Uglow in reply to AncientMariner]

I totally agree ancientmariner x

[Barnaby2]

If the GP wants to make a referral the rheumatologist does not like the person to have been put on steroids as it may mask the symptoms. My GP put me straight on steroids and then later on when I needed an appointment with rheumatologist he wanted me to come off the steroids which was a nightmare

[Sharitone in reply to Barnaby2]

Golly! A good GP once told me never to suffer unnecessarily just to be able able to demonstrate symptoms to doctors. She said 'We will always believe you'. I would haver thought rheumatologists could manage that too!

[Constance13 in reply to Sharitone]

"listen" - reumies? You must be joking!

[cranberryt]

Getting a PMR dx under age 50 is difficult and in the US almost impossible. Without elevated bloodwork, I think it is a difficut argument to make. The dx criteria in the US are bilateral shoulder aching, abnormal ESR/CRP, Morning stiffness >45 minutes, Hip pain or limited range of motion, Normal RF or ACPA, Absence of other joint pain. Also uselful in differentiating from other issues… PMR pain is worse with rest and better with movement, generally doesn’t affect smaller joints like fingers and toes and comes on suddenly, not slowly over time. I have no experience with fybro other than it’s often dx when they can’t definitively dx something else.

I cannot find the article that describes a PMR patient and fit me to a T but it involved not being able to roll over in bed or turn my neck to drive. Not being able to bed over to put on pants or shoes or lift my hands to brush my hair or hook my bra. Needing to log roll myself out of bed, and use my arms to lift my legs to get into the car. It started suddenly and worsened very quickly. I did have elevated ESR but was under 50 and had a heck of a time with dx and treatment.

The only thing that helped at all was never sitting down during the day and keeping moving and heat… like a hot tub or sauna. No painkillers helped even a little. I hope some of this will help her clarify her symptoms so she can advocate for the right help and treatment. And I agree about being seen again for some kind of treatment now and not waiting 12 weeks. I was a puddle of tears after a month. I cannot imagine 3!

[Mooc]

Oh this is terrible. I am 45 now and was diagnosed August 2020 over the phone with my GP when I was just 44. I was very lucky to speak to someone who completely understood my symptoms and put me on steroids straight away, I also think the hysteria in my voice swayed her! I felt better within 3 days and eventually got to see a rheumatologist in the December of 2020 who tested me for everything but also confirmed Polymyalgia. I was extremely lucky but I was the one who pointed out that I was too young and although they agreed with this it was still diagnosed. I started on 15mg of prednisolone and have tapered over the year and I have been off steroids for the last 2 months with a few aches but nothing special (fingers crossed I don’t get a flare but I would gladly go back on pred if I do) I think my age has played a part I’m my ability to taper quickly and keep the symptoms at bay. You may want to tell your GP that although your daughter is young and it is rare it definitely happens! I hope this helps a little just to hear that it can happen in your 40’s too.

[Uglow in reply to Mooc]

Thanks mooc xx

[Knit11]

I have both. Fibro pain is distinctly located in pressure points, not in a spreadable pain like PMR. Anti-depressants may give some relief. I also found that magnesium makes a difference in pain intensity. PMR pain covers areas: knees, shoulders etc.