Been to see a rheumatologist for the first time. Following loads of questions, xrays, bloods and urine tests, and painful prodding and poking, discovered its Fibromyalgia and not PMR. Pretty confused as steroids have had some positive effects although not totally. Coming off the steroids will be good but following a few days of a reduced dose, its bringing back a lot of pain and discomfort. I was looking forward to the PMR condition burning itself out but now, the thought of this maybe being an ongoing condition, is going to take me a bit of time to get to grips with. I will just take a deep breath and take a day at a time and accept all treatment paths that are offered, I'm going to join the Fibromyalgia site now for support and advice. Thank you everyone. X
Not PMR, Its Fibromyalgia. : Been to see a... - PMRGCAuk
Not PMR, Its Fibromyalgia.
Did you have raised markers at the start? How much difference did the pred make?
It is perfectly possible to have both - there are quite a few on the forum, The return of pain you mention could signify that. During the time I had PMR without pred I did a lot prodding and poking and I had enough of the fibro trigger points to just qualify for fibro - however, it all disappeared eventually with pred. Later I realised that the myofascial pain syndrome trigger points coincide with many of the fibro points,
Many things in fibro and PMR overlap - you don't have to go xxxx
Thank you PMRpro. Apparently I was showing gradual elevated markers since 2016 at least. Rheumatologist says that when diagnosed with PMR in 2022 those readings were a bit of a red herring. After starting on the Pred and following the next couple of blood tests, the markers were reducing but then started to elevate again. Hence the referral to Rheumatologist. I'm waiting for a script for Amytriptilene as recommended so will see how that goes. I feel at the moment it may be a bit of trial and error and see whether it's one or both. So I will stay x 😍
It is now thought I have had both, having got down to 5mg pred, which was maybe masking the Fibro, still pain and extreme fatigue, which looking back last 11 years fatigue hss never really eased.....Have tried Duloxitine, took slight edge off pain, but so dizzy, fell twice into walls indoors gripping doorways for balance!....
Hope you find something that helps......
My neice and her daughter both have Fibro, so not much I don't already know, think it must be genetic!
l
What dose of Duloxetine are you on?Did they taper it up?
How long have you been trying it?
It might be worth discussing this side effect with the GP and looking at other possible drug options that could have less severe side effects and help the pain more.
When I next speak to Rheumie will be telling him, he prescribed it. I'm on lowest dose 15 mg.....capsuals so can't cut them. Only took for 3 weeks, are you on them?
No , not been offered them yet.I take a combo of Pregbalin , and a low dose, a daily Antihistamine and Paracetamol with drugs specific for controlling my heart / circulation and a pain medication prior to exercise to prevent rebound pain.
This keeps things managed unless an infection or injury pops in.
My Fibro was hard to manage until I got proper medications for my other conditions, especially the Dysautonomia.
Pregbalin works for many Fibro patients, it is gentler on the stomach than Garbepentin and is more potent so the dose can be lower. It can still cause some drowsiness or feeling of being spaced out. My poor younger daughter , you might know her as Grandma from my previous posts has just been diagnosed with Fibro , she's only 20 , but she's started Pregbalin and is getting some good relief with it.
I recommend her to take a larger dose at night , then the minimum dose morning and mid afternoon.
Oh dear, your poor daughter. at least you have experience to advise her...my niece and her daughter both have fibro. Sister has RA....we chat daily, she has lived alone for many years (14 years younger than me)....we used to go out Tuesday's together, but haven't last 2 years, fatigue stopped that!...I am the only sister that drives, so hard losing independence!......Thank you for your advice......I always say to people.....do what you can while you can....now!......especially my son who works very hard....
My best friend and I are like that. She can't drive now with her health issues and the Fatigue , and the fact that I'm not allowed out on my own anymore makes it hard to do our old coffee visits. We just got into the habit of having our coffee together over the phone , same chat with breaks to put the kettle on!
My best friend, ex work colleague always took me out, a very fit lady. She keeps asking when I want to go out, my head does but my body is screaming no.
Could she just come and visit you at home for an hour now and then instead of going out?She could bring the coffee and a nice treat with her to make doing it even easier for you as well.
Or you could just start with a quick trip out in the car for a drive , or be picked up but only stay out somewhere close by for an hour until you have built your stamina up.
Sometimes it's the thought of doing it that makes up more Fatigued than a little trip. A bit of trial and error getting to socialise can end up being a big boost mentally and show us how much we can manage.
That's what I've found over the Fibro years anyway.
Yes have thought of that myself. Mind and body totally linked!
Doesn't occur to them that you have some inflammatory condition (not fibro) that was initially controlled by the dose of pred but either it increased or they reduced the pred too far?
New research is showing that one of the pathways of Fibro is autoinflammatory, and one Autoimmune, which they are concluding is the reason that a small group of Fibro patients get relief from NSAIDs and steroids. On a small study they showed that about a quarter of sufferers had raised inflammatory markers at the beginning of a flare. Of course , as you say it is quite possible to have both . Just as it's possible to have Fibro and GCA like I did.
Which actually begs the question as to whether you should classify it as fibro? It is having the same name that confuses everyone. Same as with PMR, it is heterogenous but doctors often don't clock that and think it is all the same.
Yes, unfortunately it will be many years before they finally create a list of subtypes of Fibromyalgia, and that's only going to happen if they manage to get funded for more research. It was the same problem for Ehlers Danlos Syndrome . And let's face it , even when the guidelines improve you still get the problem that doctors don't follow the clinical presentation in front of them and just follow the instructions like zombies.
Steroids have no affect on helping Fibro, so they must have been improving something else.
This is what is puzzling me, have had blood tests this week, waiting for results, would take higher dose pred if it would ease this pain, why has it appeared at 5 mg....a mystery......
Have you tried the usual flare advice? Just to see if it helps at all. Gather evidence ...
Good advice! Will do that after blood test results because I didn’t have the pain on 6mg or 5 till recently, it was assumed it was adrenals.
Wish there was a list of inflammatory illnesses that respond to steroids so we see for ourselves what we might have
You may have reached the point when your Adrenals are waking up and the body is trying to struggle back into being in control of your Autonomic Nervous system responses itself. With Fibro the symptoms of this can be more severe , especially the Fatigue and Pain because Fibro overreacts with a defense response to any type of change , internal or external.It helps to remember what Pain is?
The feeling of Pain is our body telling us and our brains that it feels under attack or that something is wrong trying to stimulate a reaction from us to protect ourselves. With Fibro there is a lot of autonomic dysfunction and our bodies appear to be constantly on high alert.
In other words , Fibro makes a scary mountain out of every tiny mole hill.
When we get to the point that the body is back in control of regulating the release of cortisol and adrenaline which happens as the steroid dose reduces that heightened Fibro response can be triggered to occur more often.
I don’t have PMR but Stills Disease which for me manifests as RA but is rare and without its own site. I benefit from learning and sharing here and NRAS and Lupus as I have many overlapping symptoms and if I develop something else I will be well informed to fight my corner so as PMRpro says, you don’t have to go.
I have Fibromyalgia that showed itself when I reduced the pred to a low level from having GCA from high markers. Such a blow, having to get my head around the fact that this is now the ‘new me’. I’m taking one day at a time and learning how to treat this new illness, (mainly with respect) sending gentle hugs. I’m still here, These lovely people have so much knowledge and advice, you may find you’ll still need them 😊 Also like now, there are more people that are having the same experiences and struggles. Maybe there is something we can share that can help. Stay 👍🏻
Um - how are you sure this isn't PMR appearing as a symptom of GCA and the pred dose is simply too low?
Rheumatology seem to have washed their hands of me. My markers do rise very slightly but are still within normal so they are not worried. They have done the pressure tests of fibromyalgia and yes I am very sensitive to touch and have wide spread pain, severe fatigue and aching joints. However, I have a lot of pain in my shoulders and hips, etc., I find my temp does become raised when I feel a flare. My follow up appointment for the fibro diagnosis in February, this year, has been pushed back twice now and is in mid May next year. I feel you and the fibro fb help page are the main go to places for me 🥲
I'm sensitive to touch at times - it is the myofascial inflammation part of PMR. There are a lot of overlaps between fibro and PMR - and as Blearyeyed and I have said somewhere else, their definitions of fibro and PMR are flawed. Neither is a simple homogenous condition - they come in different versions and present differently and need different management.
Don't forget , this isn't the " New Me" it's just the " New Normal".It's not You that has changed its just what You do that may need to be changed or adapted to be able to live your best Life.
You are still You . The strong , beautiful , individual You that You have always been .
You are now just You coping with a health condition.
And if You did it once , then You know you can do it again.
Hope that helps , take care , Bee
thank you for your wise words, although this has caused me a weepy tear, I know you’re right. Thank you for your support x
Getting H.A.P.P.Y is the key to eventually getting back on track when you have a Chronic condition.I came up with H.A.P.P.Y as a way to explain the steps years ago . It stands for Honesty , with yourself and others. Acceptance that you have a condition and might need to make changes to make it easier . adaPtion , making the changes once you know your needs and triggers , and finally , Pace Yourself , creating a routine that has a good balance of activity and rest that you fit your daily schedule around.
Acceptance is often the hardest part and can take time , especially if you realise that you may have to change or stop doing certain things in life that you really enjoy. It's often hard for us to accept that it is fine to need a bit of medication support and we should do so guilt free. In reality , there is no difference between needing medication for a condition like RA or Diabetes than Fibro , the meds for anything are taken to reduce symptoms and give you the chance to live life more fully.
Honesty , when you do it , opens so many doors. Tell everyone in simple, positive terms what you have , how it might effect you , and that you may need a bit more practical help or may not be able to do things quite the way you used . Also that you may need to get others to do certain things in the house that you used to do. It opens doors for your family as well whom are often secretly hiding how much they worry about you , or are scared because they don't understand what you're illness is, or guilty, if they see you struggling to do things for them or in pain afterwards. All those feelings often come out as anger or frustration and all those negative feelings can be released by all of you by having a hold of the facts.
Explaining that your plans have to be more fluid and that you might need to cancel something at the last moment , or spend less time at a social event , is really important. It stops people getting frustrated if you do it and they don't understand why. It also stops people putting added stress on you asking you to do lots of things to help with an event that might be the reason you end up having to cancel going because you are too tired after doing the preparation.
Good thing is you learn whom your friends are. Anyone whom takes issue with you needing to change and look after yourself were usually only fair weather friends anyway , or picky relatives that you never really enjoyed being with . If they don't keep up contact you aren't missing anything , but you also find people whom offer to help and become a godsend , or are really understanding, sometimes you find people whom have Fibro or other conditions that they haven't felt strong enough to talk about themselves. Often these friends might not have been as close to you before but become great buddies now.
Patience is key . You will get there , and probably find you have a much better lifestyle and life balance than you ever had before , a balance that would probably be better for someone without Fibro to follow to live more healthily too.
Take care , Bee
I find acceptance is the most difficult at the moment. I keep thinking that I will be ok and it’s all just a bad dream. I have found I have lost a lot of my mobility, stamina, like you say friends, who maybe weren’t actually there for the long haul, however, I have found that some are actually worth their weight, which I am so grateful for! I have become a bit isolated due to the fact I seem to have a lot of bad days, this horrid weather doesn’t seem to help. It’s the accepting help from others when I was the one who used to be the one offering it before. I loved my job, being active, walking, running, caring for my family. Now it’s me who needs the help. But I am not in a bad place just, feel very sad from time to time and am not sure how to start to feel positive again. I’m sure something will give me a spark, eventually. I will look at your list, that should prompt me 🥰
I have found that Acceptance comes and goes for me. One thing that really helps is when I wake up, when often the first thought in my mind is s**t, I list the things I feel grateful for. Three things, or five things, and sometimes more. And I think about those things before I get out of bed. This has kept me going through nearly 4 years of GCA and PMR and the wonderful/dreadful prednisone!
I remember some years ago reading two things - two different books at approximately the same time. Don't remember the books although I think one was by the Dalai Lama. Go to sleep in a state of grace. And go to sleep thinking of something for which you are grateful (which I interpreted to mean this was a way to be in a state of grace).
that’s a good idea. I do try to be positive. Looking at the bright side of most things. I tend to be, at home, on my own, quite a lot of the day. I busy myself and I’m lucky enough to be able to draw and sell my work, of which I am extremely grateful. It’s just that sometimes it just dawns on me, the massive change that my life has taken, these last 3+ years but you’re right, I need to pick myself up, brush myself down and look to the future and accept that it’s going to be a bumpy ride 🥰 Thank you 😊
Yes . This is a long journey of puzzlement. I would stay. Also your experience helps us all.
I have both fibromyalgia and giant cell and PMR. I was diagnosed with fibromyalgia years ago then giant cell 5 years ago and PMR reared its ugly head in the last two years. Just recently my rheumatologist and I were discussing whether I was having a flare of PMR because of symptoms (but no elevated Crps which usually accompanies a flare) and we decided it was fibromyalgia because of the pressure points so he increased the amytripline. He was right but it does make it complicated.
I have fibromyalgia (14 years-ish) & PMR (3years). If I could choose I would have fibro rather than PMR! Yes, fibro is diagnosed by prodding in lots of places all over your body, as well as symptoms. Amitryptylline, taken in evenings helps muscle relaxation & getting to sleep…but don’t take too late or you will be tired in the morning, & not happy (my thoughts from it anyway)! I need to take mine about 7pm to avoid the ‘morning hangover’, but it’s trial & error! There are other drugs to help, too…you will learn a lot on a fibro forum!! Good luck! S x
Glad to hear you are joining the Fibro forum , I will look out for you there . Don't be scared to keep asking questions here too , this is the place to get help while you cope with tapering off steroids or if you want support about getting extra help if you feel that you could have both PMR and Fibro.That's the point. Doctors have a really bad habit of assuming you can only need diagnosis for one thing at a time when in reality you can have more than one ,it's just one illness triggered the other .
Fibro is a long term neurological condition but just like PMR it can be managed to maintain a good quality of life. It is now being shown that it is possible to have raised inflammatory markers because of Fibro , research pointed to one quarter of Fibro sufferers getting flares via a autoinflammatory pathway. This can be why many people get a reduction in pain using steroids or NSAIDS when others don't. Other research is pointing to it also having an autoimmune pathway .
You will really need to take it easy in the next few months as your body gets used to the change in medication and taper. This change effects a Fibro person more than any other as the Fibro flares to external stimuli and internal change and Neuro pain flares severely from it. Basically , think of your idea of your slowest good day then cut off another third.
Take the next few weeks making a good pain diary . Mark when your pain is worse , what activity or things trigger pain etc. This is important to help you plan your day pacing in rest at times when Pain or Fatigue is worse , but also you may need it if you want to get a second opinion about PMR.
And a second opinion is something I would recommend , as a past sufferer of GCA and an experienced Fibro Warrior.
If you have both conditions a flare in PMR will cause a flare in Fibro and vice versa. Both need to be treated properly if you have both and you want to manage your pain.
The drug withdrawal could give you a Fibro flare making the pain worse , but the problem could be from having both conditions when neither are being managed well yet.
I would suggest that you find out whom is the best PMR consultant in your area ( post the question on this forum ) and request to get a second opinion from them via the NHS department you went to , or , bite the bullet, and get a private consultation with the best PMR Consultant you can get to , whom also works for the NHS so you can request to go on their NHS book at the initial consultation making it cheaper to do.
You are going asking the question , do I have BOTH Fibro and PMR ?
It isn't something to waste time on when you get these crossed diagnosis.
Its not a waste of money , it's an investment in yourself, and your family, and it will eliminate the months of extra pain and added costs to you if trying to cope when your diagnosis may not be a full or adequate one is causing you to be very ill .leaving you tapering from a drug that you still might need as well as your Fibro treatment.
Try the AmyT but don't expect miracles . If it feels like it is doing nothing ask for other medication. Few people with Fibro get relief from AmyT alone or at all . Fibro often needs a combo of neuro and Inflammatory pain medication combined with gentle exercise , nutrient rich diet , supplements , hydration, and rest and relaxation .
I found the most help was a combo of Pregbalin and Paracetamol with the medication which helps my other conditions to manage pain.
See the point , I could not manage my Fibro well until I was being properly treated for anything I have.
Your aim is to be Pain Managed not 100% Pain Free , a well managed Fibro person is 85% Pain Free while having a well paced and satisfying quality of life.
I would also look up whether you have Hydrotherapy in your area and ask the GP to refer you for that as hydro helps with exercise based pain reduction.
Finally , get to the GP and request some blood tests . If they query them point out it is your right to ask for them and that you are being proactive about your care , getting a baseline to work from. Point out that Fibro can cause deficiencies in vitamins and minerals which make the symptoms worse.
You want your full blood count, liver function , kidney function, Vitamin B12 , Folates , Ferritin Panel , and Vitamin D done to start.
If you need more help chat to us , or you can private message me anytime.
Take care , just remember you came to accept PMR and were being positive about its treatment , you can do the same with Fibro too.
Hi Penny...I am sorry you are going through this. I was diagnosed with fibromyalgia in the early 90's. It took several years to get a diagnosis. The doctor that diagnosed me tried the usual things elavil...could not tolerate it at all and some others but nothing worked. I had a crazy job and was moipic about being able to work. He then tried tramadol. I carried around a pill case with alarm to take it. It was amazing. It lowered the pain most important but also handled the overall strange fatigue odd feeling that would overtake me. It does take energy management. But I was happy that FIBERS as I call it didn't stop me from work. Years later a long acting dose became available and that is what I take now. I also developed RA and OA. So that complicated things but the tramadol has always worked with no.side effects at all. When I developed PMR this past May I did experience fiber flares. For me the pain is different and locations somewhat different. While my hips hurt with fibers the PMR does as well but just feels different. My shoulders and arms are sore if you grab me with fibers....with PMR shoulders and arms hurt regardless and are becoming useless. My thighs hurt with PMR and I have spasms in my back muscles after standing for a few minutes, that is PMR. I think you might consider both. I will say most of the meds they offer for fibers now, which I have tried at some point were either not effective enough or made me so loopy it did not matter. You would have to ask to give ultram/tramadol a try probably.
Last I learned from a fibromyalgia specialist, my rheumy before I moved states that fibers also involves the autonomic nervous system...it explained more of the disease to me.and why it was more than trigger points.
Good luck figuring this out and getting the help you need. I am glad you found this place it has helped me so much. Take care of yourself.....be well.
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