After taking prednisone and VERY slowly decreasing the dosage over 7years, I was down to 1mg when suddenly I had hip and knee pain, and hurting shoulders. Went up to 3 mg with no relief. Doctor finally diagnose me with fibromyalgia for which there is no clear treatment other than doubling my antidepressant. I see my rheumy mid-Feb so I may learn more. Are there others out there with this diagnosis?
PMR connection to fibromyalgia?: After taking... - PMRGCAuk
PMR connection to fibromyalgia?
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blueisgreen
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Did steroids help you originally? Steroids are useless for fibromyalgia. Of course you may have had PMR and then the fibromyalgia more recently. Or you may still have PMR and not enough steroids. A friend with fibro takes pain killers such as Tramadol for it. Do pain killers help?
I have had PMR for 7 years. Worked down from 40mg to 1 very slowly. Was ok with some hiccups all the way down to 2, but 1mg never relieved PMR symptoms. So I'm now on 3mg but still no relief. In meantime I also have horrible hip pain, then knee pain, then bad shoulder pain. That's when doc said I have fibromyalgia. So he told me to double my antidepressant . No relief so far but it's only been two days. Can't get into rheumy for 6 weeks. I haven't tried pain killer such as Tylenol or Advil because I don't think this is advisable when on Prednisone. Is Tramadol a prescription medicine?
Tylenol is fine with pred.
You probably need to increase by 5mg of steroids to hit the PMR on the head. The fact that 1mg is not working may mean you are not on enough.
I take tramadol for fibro and have for so many years....doubling antidepressant is a smidge scary...Did the doc do the pressure points? Just knees hips shoulders...seems more PMR to me. Fibro a lot of the time can be more diffuse kind of all over. Thete are meds used for fibro...did not work for me but thete are options. But I would test increased pred it sounds more like that to me. I have had fibro flares more with PMR but again it's not so site specific. Check out how to diagnose fibro...you will see what I mean. The pressure points tell the story. Take care.
He also tested my shoulders and neck and elbows and ankles and hips and back. So I think doc might be right. But I'll look up your what you suggest. Yes, the pain is diffuse and it roves all over my body. !
Ok that's good. I think sometimes fibro is the go to with docs... after years of saying it was not real. I could be I was concerned that from the post I read it sounded more like one or the other. Pain meds do help fibro....several of us posting take tramadol. I thi k one person mentioned an opioid? I take hydrocodnebfor OA and always felt it helped. But tramadol extended release 300 mg is the best for me. Take care
When I see my rheumatologist in Feb. I'll have a lot of questions to ask. Thank you all for your replies and suggestions. As I said somewhere else, I'm going to try 10mg of prednisone this morning just to see if it has an affect. Again, thanks to all of you!
I haven't been taking Tylenol because I'm still in the diagnosis phase. Took 10 mg prednisone this am, but my shoulders, knee and hips still hurt. I'll take pain killer soon.
Give it a day or two for the steroids to hopefully work. Do other painkillers work? They tend to help fibro but not PMR.
PMRproAmbassador
As I said to you before, I doubt going to 3mg was enough to rule out this isn't a flare. We would have suggested at least 5mg and even then, that might not be enough. Discerning between PMR and fibro isn't as easy as some doctors seem to think. Originally it was very difficult to choose between fibro and PMR because the overlap is very confusing. Until I tried pred - relief in 6 hours. But it was a struggle to get under 10mg. some people just need more pred.
OK I'll try 5mg. to see what happens. Thanks.
I hope it helps - but if this is a "proper" flare you might need more. But you can't assume it is fibro on the basis of no response to a very low dose of pred.
Can you say why the doctor thought it to be fibromyalgia as opposed to anything else?
11 out of 16 points on my body were painful when he touched them. Also, the prednisone for my PMR wasn't taking away the pain. Very tired, these days.
I can only repeat - 3mg was unlikely to be effective. Pred only works for PMR if you are taking enough. Even 1mg too little will let in a flare eventually as the unmanaged inflammation builds up.
Before I tried pred, I had done a lot of research and I had 11 of the fibro points - but I don't have fibro, 15mg of pred was a minor miracle
Up until now the prednisone worked very well for PMR. After 7 years the prednisone is not controlling the pain all over the body, especially shoulders, hips, and generalized pain.
But are you on ENOUGH pred? Just because you achieved a lower dose earlier doesn't mean the disease activity hasn't increased for some reason - over the years I have had several flares which required an increase in pred dose but later I could reduce it again. It is particularly confusing when myofascial pain syndrome is part of your PMR because that doesn't always improve in response to increased pred, causes trigger point pain that overlaps with fibro but does respond to certain other therapeutic approaches which fibro wouldn't.
I have had PMR for 7 years too. I was down to 1mg last Christmas , then overnight the same old PMR pain hit . Dr said to go to 3 mgs - it didn’t work , I went higher myself to 10mgs and horrible pain subsided. I went down to a5mgs and have stayed there .
I have however had Fibromyalgia for 26 years. After diagnosis , I researched for a year , tried all sorts of things and learned to live with constant pain .
PMR pain arrived in the middle of the night , I was diagnosed within a couple of weeks , I was put on steroids and within 24 hours , new PMR type, pain was gone .
Over the years it has been difficult to decide what problem is causing my pain . I suffered consistent type pain with Fibro for many years , but PMR pain was new and excruciating. I was told by Dr that if steroids helped the pain , then I definitely had PMR . Steroids took away the new PMR type pain , but not the old Fibro problems .
It is complicated but I do hope you can get relief .
Thanks. I went up to 10mg this morning and no relief. Darn.
Then you may well need to be on it longer - doesn’t always work that quickly for many people. You need to give it time to mop up the accumulated inflammation - and you can stay on high dose up to 14days (if needed) without impacting on reducing to a more sensible dose afterwards.
you are being fobbed off. See what your rheumatologist says. X
what does "fobbed" mean? I'm in the U.S.
being told something that probably isn’t true or proveable to get rid of you, to try to satisfy you.
Hi, I have had Fibromyalgia for many years and when PMR kicked in 19 months ago, the pain and tiredness were a totally different experience!Prednisolone doesn't help Fibromyalgia pain for me, I was on Amiltriptyline until September this year but that made PMR pain worse for me so I am now on Gabapentin, which seems to help with the pain. I have Osteopenia and Osteoporosis caused by Pred because I wasn't prescribed bone meds early in PMR diagnosis so a lot of damage was done! 🙄
Fibro isn’t an inflammatory issue and there are no tests for it unlike PMR. They are completely different. I’d take Fibro over PMR any day
Why? At least with PMR you can get rid of the pain with a pill. As far as I know there is no medication for Fibro.
I can’t take the steroids so I’m bedbound with PMR. Fibro was nothing compared to this, for me. I devastated by PMR.
So sorry. That makes sense.
I had pmr for 5 years,I've been pred free for 18 months after a very slow reduction from 15mg.I did get some aches and niggles in hips and thighs at first(6months) but wonder if it was just a weakness in muscles after taking pred for so long.I saw a rheumi and she said maybe it wasn't pmr in first place .??I'm fine now but never push myself with exercises and I keep my weight under control .
When your rheumy said it wasn't PMR after all (!), did you just stop with the prednisone?
I'd been off the pred for 6 months and didn't go back on it.She referred me for a hip xray,dexascan and blood tests.All was ok,gradually all aches have gone.I'm sure it was pmr,I couldn't turn over in bed,get out of the car or walk upstairs.After taking pred 24 hours later I felt relief!
I have both PMR and fibromyalgia and both diagnosed by my rheumatologist and neurologist. I am down to 6mg of pred and have monthly blood tests to monitor my inflammation which we use to monitor my pmr. I take Gabapentin for the fibromyalgia and also dihydrocodine on days when the pain is severe. It’s just juggling things to get the most help. The pain medication allows me to carry on working full time which is important for me. It’s blood test day today so hopefully I can reduce to 5mg when I see my doctor on Friday.
Ironically, blood tests have never showed inflammation despite clear indicators of PMR. I don't know what percentage of people with PMR have the same. Prednisone has been a lifesaver through the years, until now.
my blood tests have never showed inflammation either , but prednisone worked so well
I had fibromyalgia about 12 years before I had polymyalgia. Diagnose was re-affirmed last year by pressing the ‘pain points’ for fibromyalgia, I had 16 out of 16 pain points positive, I can tell the pain from one or the other, steroids made no difference to fibro, even at a high level of 17mg a day. I continued to work full time with fibro, but couldn’t take either Gabapentin or Pregabalin due to severe side effects. I take tramadol on prescription, but started that after a car crash, not connected to fibro or polymyalgia. I now have other medical issues & it does get hard to pinpoint just which ailment (8 & still collecting) is causing which pain!!
Gosh. I feel for you. I have the same issues but not with 8 medical issues.
Interesting for me! Thanks for your reply. That post was 11 months ago…& I now have 12 medical issues! New ones are dry macular degeneration, plantar fasciitis, orthostatic hypotension, & I can’t remember the 4th due to brain fog, ah hypermobility (which I’ve had all my life, but finally diagnosed)!!! S x
I have GCA and a mild fibro diagnosis. Co Codomol seems to help with pain issues but can make you constipated unfortunately. I also take ,30mg of amytripaline and gabapentin for foot and leg neuropathy which has been present for three years.
could I ask you please, how long have you been sufffering with GCA, and what symptons are you having, if you are taking prednisone, what dosage are you on, so for so many questions, but I have been tested for suspected GCA, after being on pred for over 6 yrs, and after tapering to 4 mgs, now have been increased to 25 mgs, for last 10 days, still having mild symptons, thank you
Hi! I have had GCA since 2020. It was diagnosed in May during the first lockdown. My ESR and CRP markers where in double figures and I was put on 60mg prednisolone.
I think I had had GCA for quite a while before it was diagnosed. I had a headache every day for a long time but had not spoken to my doctor as they just dismissed it as my age and fibro. I also had aches and pains across my shoulders and down my arms. The headache was across the occiptal area and more widly spread. I experienced shooting electic type pains in my temples. slight earache and pains in my jaw. My legs ached and I was tired all the time, however much I slept. I felt overall very unwell. Luckily I got a blood test at a very difficult time.
I have managed to get pred down to 8 mgs and am due next week to go to 7.25 I have struggled at times with the reduction as it has made me feel quite unwell and to have symptoms similar to the original ones. I have found this part of reductions quite difficult as I was rather frightened the GCA had flared up again which happened twice and was confirmed by scans.
The last few days I have had headaches again and tiredness earache and the overall feeling of malaise. But that could be Christmas and the various stress levels it brings with it.
I hope that helps answer your questions. I found that when I started on the pred all symptoms went completely it was like heaven. It would of been nice to feel that good forever. Apart from the pred side effects.
I havePMR not GCA. I have been working on reducing my prednisone for 7 years. Had worked my way down to 1mg when I started having pain all over my body. I am now up to 5mg and might take 10mg to see if pains resolve.
Similar but not on pred for so long. Feb 22 diagnosed with PMR. Partial relief with pred. Then rheumatologist diagnosed me with Fibro Nov 22 and to gradually come off the pred. Still waiting to find out what happens next. Been in a lot of pain. Gp won't prescribe anything until they have contact from hospital. Just had Covid, double wammy dealing with pain.
That sounds awful. I guess we're all in a wait and see.
yes. I was diagnosed with both. I actually think I’ve had fibro for longer but undiagnosed. Medication has little impact. Anti depressants doubled but today I am unwell with profound fatigue, pain and crying for no reason. Take each day as it comes.
Sorry I haven't replied before , offline because of Christmas.I have Fibro and previously had GCA.
Unfortunately, as others have said having both can be confusing . Sometimes you can have Fibro and it will trigger the development of other chronic conditions like PMR. Sometimes you can have PMR , Arthritis or even another long term injury or infection and that can trigger the development of Fibro. Fibromyalgia is a neurological condition which involves the body reacting too strongly to things like touch , temperature, digestion , activity and body changes causing severe pain in various parts of the body.
It is very difficult to manage the pain of PMR or GCA with Fibro because it is hard to tell which medication to increase to give the most relief. Usually, you need to have different medications to manage the pain for each condition.
In the most part steroids give little to no relief for Fibro pain. You could increase the steroid again to 5 mg for two or three days but if there is no significant change it will show that it's likely to be neuro pain which steroids aren't helping and you could reduce back to 3mg so you aren't stuck in a tapering situation again unnecessarily, as tapering off a medication can cause rebound pain from Fibro as it reacts to chemical change . You really need to see the Rheumy and confirm your diagnosis before you start tinkering with steroid doses unless you are absolutely sure that it is a PMR flare that you are feeling. So with the pain take a moment to sit and think each day and write a pain diary to show your doctor's.
Note the level of pain from 1-10 in each area you have it and then think , does this feel like what I remember PMR to feel like it is it different?
Depending on the pathway your Fibro comes from it is usually managed with one, or a combination of , Neuro , Antidepressant , Antiepiletic, or Circulatory medication.
Paracetamol ( Tylenol) is usually helpful taken alongside the Fibro medication you get, taken at the standard dose, a few times a day , to help cope with any inflammatory Fibro pain you may also have. This is especially useful if your Fibro comes from an autoinflammatory pathway.
May I ask which antidepressant you are currently taking and what dose the GP has told you to take in mgs?
I should be able to ease your concern as to whether this is suitable or suggest other things for you to discuss with your GP.
If there is the possibility of Fibro but it needs to be confirmed by the Rheumy , in the meantime , you could ask your doctor to let you trial a low dose course of Pregbalin. Starting on 50 mg three times a day will allow you to see if you are tolerant to this drug , if you find some relief it will help the Rheumy confirm the fact that the pain is neurological and likely to be Fibro.
After that a possibility is to increase the Pregbalin until your pain is managed , or remain on that dose and combine it with a low dose of Duloxetine. This dual drug combination with paracetamol seems to give the best improvement in pain in research and patient experience.
Fibromyalgia treatment is usually lifelong and you need more than medication to control it. Medication is only there to manage the intensity of the pain . Self Care is the vital part of the therapy.
You need to pace your activity even more than you have before, even with PMR, creating a good balance of rest to movement or mental work. Your first important job is to recognise your triggers of pain and avoid those things and adapt how you do certain things so you don't make the moves in a way that triggers pain.
Things like touch , temperature, types of chemicals , Stress ( either too much good or bad activity) can all trigger Fibro.
Gentle exercise at a level within your comfort zone is also vital to Fibro management, it's necessary to manage pain and Fatigue . Even just a five minute walk and a few gentle stretches a day do reduce Fibro symptoms.
Hydration and a good diet with vitamin supplementation is key to improving your body's ability to cope with the constant healing it has to do with Fibro and getting that right does help reduce flares and the level of pain.
Building a good sleep pattern and using relaxing breathing help Fibro a great deal too.
Even changing things like clothes , washing and beauty products, and getting good fitting shoes and improving your posture help Fibro.
Getting the balance right in Preventative Self Care can reduce flares and the need for increases in Fibro medication by as much as 40% although it takes time to find the pattern that suits you.
Many Rheumatologists will diagnose Fibro , many also miss it depending on how good their knowledge is about it , or how resistant that are about it!
Check if the Rheumy you see treats a lot of Fibro patients , if they don't you might need a second opinion. You definitely won't get much information from them about how to care for yourself. It would be wise to join the Fibromyalgia Forum here on HU and post for advice just as you have done on this forum for PMR.
You will also be able to get lots of tips on how to cope as well as reading about some of the unexpected symptoms linked to Fibro like IBS , Brain Fog ,Rashes, Digestive problems etc
It would also be sensible to follow the links from the Fibromyalgia Forum to the Fibro charity website to read up on the basic facts. It will help you judge just how up to date your Rheumy is in their knowledge of Fibro.
Fibro , unfortunately, has no cure; but, it can be treated. It is a lifetime chronic condition , but can be managed in a way that stops it getting worse and maintains your quality of life.
Medication only helps manage the symptoms, Self Care is the most important part involved by stopping pain flares in the first place. A pain medication combined with self care will be working if you are 85% pain managed, most of the time , while continuing a gentle quality of life. That is success in Fibro treatment. No self care or medication will make you 100% pain free with Fibro .
Hope that helps.
I will keep an eye out for you on the Fibro forum and help you if I can. Take care , if you got through PMR then you have proved you are strong enough to cope with this too , Bee
My goodness. This is a wealth of information. Thank you. Yes I will go to the Fibro HU. FYI the antidepressant I'm on is the generic for Effexor- Venlafaxine ER 75 MG, extended release. I take 1 in the am and 1 in the pm. And what do you mean by "Even changing things like clothes , washing and beauty products". I could read this so many ways...😀
Fibromyalgia can be made worse by hypersensitivity to clothes and chemicals in products used on the skin. Sometimes things like seams digging in to tender points , belts and tighter or tailored waistbands can trigger pain. For women bras can cause issues. Many people cannot wear bras with underwriting or if they have an ample chest thinner straps pressing down into the shoulder triggers shoulder , neck and head pain. Compression tights or leggings and tops can often help ease the pain if your neuropathy is linked to circulation or you get worse pain in cold weather.
Many people find putting their hair up in bands or with clips triggers head pain . Even hairbrushing or hair driers can trigger head and shoulder pain.
Some people react via the skin to products because the nerve endings are more sensitive to touch and chemicals.
I'll check through the drug info and let you know my findings tomorrow, take care
Venlafaxine has actually been researched with very good results for the management of Fibro pain in people with or without Depression. It is similar to Duloxetine and is effective as a muscular relaxant and pain killer. Your GP has made a good call in suggesting that you increase this medication as you already tolerate it .
If you haven't made the increase already , try it by tapering up the dose over the next three to four days. It could take 2-3 weeks of taking that dose regularly before you see a significant improvement in the nerve pain. Nerve pain does not respond to pain treatment as quickly as inflammatory pain does. It can days to feel some change but months for it to feel in control , especially if it was not treated for a long time and some nerve damage has occurred.
I would also suggest you ask the GP about going on Pregbalin on the low dose ( 50mg / 3 times a day) to work in combination with your Venlafaxine as this combination has seen the best results, with two doses per day of paracetamol, in controlling Fibro pain in combination with Self Care.
When you go to the Rheumy be prepared with a pain diary and print off a simple graphic illustration of the human body and mark on it the points you get the most pain with a coloured pen. Also , write down the other symptoms you get regularly apart from pain in your diary so you can say I get ...... I get it everyday / three times a week etc.
Symptoms include Dizziness , Dizziness and/ or sweating after a shower or bath , Fatigue , Brain Fog , Trouble Concentrating ,Pins and Needles , spasms and twitches when at rest in legs , arms and even in the stomach , eyelid twitches, Restless Leg Syndrome , poor circulation, numbness ( especially numb pain around the joints and radiating away from the joint, electric shock pains when touched or stimulated by things like temperature and weather, always cold , hot flushes when not in Menopause or while on HRT , rashes or allergy reactions , palpitations, chest pain and swollen chest , Migraines if all sorts , Headache , Tooth ache , ear ache and tinnitus , trouble with body coordination, clumsiness , muscle weakness , insomnia , feelings of Anxiety with no immediate reason for it , nausea after eating or travelling , blurred vision , dry skin and eyes , Chilblains , blood pooling in hands and feet on standing or in the cold , post meal sleeping , emotional swings .
Last tip , we often fall foul at Specialist appointments by keeping up good behaviour or more medication before seeing them so that we feel " well enough " to get there. If course , if we feel well enough on the day we are more likely to be asymptomatic, or have less symptoms for them to see on the day which often means they won't think you have enough of an issue for a conclusive diagnosis and they send you home saying it's nothing or something else .
It took years and years of back and forth with my health issues , and a lot of reading and experience of "gaslighting" before I was properly diagnosed for all of my lifetime health problems. Most Specialists are not that knowledgeable about Fibro or Autonomic Nervous System problems even though it is within their field , or they pretend to be!
So , I got into the habit of slowly tapering down to my original dose of my pain killer for a couple of days before the Specialist appointment and only pacing myself to the point I was when I went to a GP. Then I would take my essential medications for other health things prior to the appointment but again only the lower dose of pain medication.
This meant at least for the appointment my Fibro symptoms had re-emerged to a point when they had been similar to before getting GP help. The steroid dose for PMR or GCA I obviously keep at the dose it needed to be for those issues , as the steroid didn't help any neuro issues I have anyway ... In fact , at high doses it made the Fibro worse.
Any drugs I took for things like heart and non Fibro conditions I also took , the point is to show the neuro pain you have not make yourself ill from anything else.
It meant my response was more typical to the Fibro condition when unmanaged for the Specialist so they could diagnose it properly ( if they had the experience to do it).
Yes , it means your Fibro is being allowed to flare up but as soon as the appointment ended I went back on the dose of drugs that was helping it , or new dose suggested by the specialist . I would also explain that I was being helped by the drugs I had been taking via the GP ( if I had been ) but that I was having a flare at that point .
I wouldn't suggest this tactic to everyone , but I do suggest that nobody takes extra medication before and on appointment date to manage to get them to the appointment without feeling awful. It's counterproductive to be so controlled by pain killers for the Specialist that they can't see the symptoms you suffer with.
Again, thanks for all this information! How do you know so much about it?
By being stuck trying to get my conditions diagnosed over decades and then learning through research and trial and error about Fibro and how to treat it so I could get my doctors to give me the right help , as most of them don't have a clue . Much like we all had to do while coping with PMR or GCA.It takes time but you learn your needs and pace your life and you get to a spot which you are satisfied with so keep positive.
I may be in your club there. My GP has wondered if I have Fibromyalgia....
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