Just to let you all know what has happened to me, in case it resonates with anyone. I was diagnosed with PMR about 6 years ago, and have been unable to get my steroids down for any length of time, though did get down to 8mg during a very stress-free period. Otherwise, every time I tried to reduce, the symptoms worsened.
Well, my GP had to review my medication. He was horrified to find me on 15mg (who had been prescribing it??) so referred me to the rheumatologist for the first time.
He was equally horrified that I had been diagnosed with PMR even though not indicated by blood results. After examination and questioning, he announced that I had never had PMR and in fact had fibromyalgia. This explains why the symptoms never reduced for any length of time.
I'm somewhat sceptical about medical expertise by now, but reading up about fibro I think he is right, it is a better fit for my symptoms and history. So I have now been taking nasty drugs unnecessarily for 6 years and may never be able to get off them totally if my adrenal system doesn't restart.
My family think I should make an official complaint, I am more inclined to just put it behind me and move forward. Im nearly 70 and energy is limited. What do people think?
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Amanda_iona
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If pred did work for the pain you had - it was highly unlikely to be fibromyalgia. It doesn't have any inflammatory component, it is a pain-processing malfunction.
Up to 20% of PMR patients don't have blood markers that are out of what is called normal range. That doesn't mean they aren't raised for YOU. It is beginning to be accepted that there are multiple versions of PMR - and they show different characteristics. I need well over 10mg pred to manage my symptoms optimally - but I have been down to below 5mg in the past - and I have had it for over 16 years. There are others on the forum with similar stories. And stress does make a major difference - I have reduced my dose by 7mg since my husband died having had to increase the dose to be able to function as sole carer.
I'd be inclined to think that a complaint wouldn't get far - though your GP practice could do with some reeducation on how to monitor patients. One clear indication for referral to a rheumy is an atypical presentation and difficulty in reducing the pred dose.
Oh my goodness. So sorry. A complaint should trigger a critical incident as a practice (in the UK at least) and it should be discussed so that it doesn’t happen again. If it isn’t for you it’s for someone else. It’s unfortunate you were misdiagnosed with a condition that has many similarities but what isn’t excusable was the lack of reviews and any attempt at finding a different diagnosis. Compensation may be worth considering if your life has been irrevocably changed and it turns out malpractice took place.
I have had PMR for nearly 10 years and mostly been on doses over 10mgs. The PMR was diagnosed by PET scan . My inflammatory markers go up and down a lot and I have lost count of the number of flares I have had. My problem was that various rheumatologists denied I had PMR and it took the PET scan ,after 2 years of battling, for them to agree the diagnosis, so my problem was the opposite to yours!
I'm so sorry to hear your story .As a person whom was misdiagnosed most of my life and only got a full diagnosis of my conditions in the last year I can empathise with the feelings you must be going through.
One difficulty you have in your case is the duration you have been taking steroids and being treated for PMR without additional monitoring or tests from a rheumatologist.
The truth being , you may have Fibromyalgia , and have had it six years ago or more , but you may have also had PMR when you were originally diagnosed by the GP too.
I have Fibromyalgia but I did have GCA/ PMR for sometime , I had to keep both conditions under control with different drugs while I suffered from both. The Fibro and GCA/PMR would bash heads and make each other flare.
I had to reduce steroids rapidly because of another health condition I am diagnosed with , a reduction plan which I wouldn't wish upon anyone , luckily, by the time I did that reduction my GCA was in remission but I was still in incredible pain ; its just the pain and symptoms that I was experiencing was not the same type as it was when I had GCA even though it was often in the same places.
If you did have PMR it could have gone into remission some time ago , or you could still be recovering from it , but , you have not been getting pain treatment that worked effectively for your Fibromyalgia which is why when you reduced to a certain dose of steroids ( below 10mg ) the steroid dose was no longer masking the neurological pain that Fibro causes. Steroids do next to nothing for Fibro pain for most Fibro sufferers.
Your first step is to request a copy of your medical records , including all of your test results so you can assess if anything was done incorrectly during your treatment.
You also need to know why your original GP did not refer you to a Rheumatologist much sooner to have your condition assessed , especially when you appeared to have stopped responding to treatment.
You obviously need to take the time to regain your composure and think carefully about what you want to do next.
The most important thing you need to get sorted out is some form of appropriate Pain Management suited to Fibro or you won't feel up to anything .
Usually a combination of neurological pain medication , paracetamol and physiotherapy support combined with a vitamin and mineral rich diet.
At first you may need more drug support than you will later when the Fibro is more under control.
Until you have the Fibro pain in control reducing the steroids is going to be very hard.
When the Fibro is in better control , however , I can tell you from experience that the taper of steroids will be easier than it has been over the last few years.
Has the Rheumatologist prescribed a starting medication for you?
The doctors involved in helping you taper are also going to have to accept that it may take longer than they would wish for you to get off steroids entirely because of your Fibro , and how it is effected by changes in chemicals in the body , meaning you need to take making reductions carefully and other pain medications need adjusting as you do it too.
Fibromyalgia is often missed by a GP , they often don't have the training or experience to spot it or test for it . Many Specialists miss it too.
Sometimes Fibro can be so far out of control that it also causes inflammation in the joints and other parts of the body ( there are a number of different reasons for this which are a bit too lengthy to discuss here) but this can effect your markers which can also make diagnosis confusing. PMR is also often missed by a GP.
This is part of the reason that it is usual practice for a GP to send you to a Rheumatologist to get further support for their diagnosis of any Rheumatology condition.
One thing that may help you begin to get control of your Fibro is to contact the Rheumatologist you have seen and ask for a copy of their letter but also ask them to tell you which Fibro points on the body they have noted. This will help you know where your body pain is be triggered from and help to avoid certain activities that flare them.
If you aren't feeling confident with any of your medical advice just now , which is totally understandable , you may benefit from requesting a second opinion from another Rheumatologist just to be sure about your new diagnosis.
Ask to have an appointment with a Senior Consultant whom has experience of treating patients for PMR and Fibromyalgia , they could make the final conclusion that you were , in fact , at some point suffering from PMR and Fibro , as, despite many doctors wishes , the answer isn't always either one or the other , sometimes its both.
Fibromyalgia is a lifetime chronic condition which is made worse by Stress so whatever you choose to do you will need the full support and at times advocacy of your family or friends , especially if you want to take action against your Primary Care Provider, because, as you say, your energy is limited.
These sorts of things take time and can cause you anxiety before you achieve a resolution and it is the sort of battle I would suggest should only be embarked upon if you have someone competent enough to speak on your behalf when you are not up to it yourself , or whom is able to help you compose letters and take part in meetings when you are.
If you don't choose to seek Compensation you should still send a,letter of complaint to the local board that supervises your Doctors Surgery. They need to know so that they can do an assessment of the Practice and make sure that they are retrained appropriately.
I will be honest with you now too , Fibro can have an effect on the body inside and out. It can be kept in control but , I am afraid , unlike conditions that can go into remission like PMR , it is a lifelong condition and you need to understand that your aim is to be pain and symptom managed ; not pain and symptom free.
If you want any more help with understanding Fibro there are a few good support groups on this site , and some great sites and blogs that will help you .
I am happy to keep in contact with you if that will help too , just press on my little avatar , go to my profile page and I'm happy for you to private message me .
I have both, & my fibromyalgia has been diagnosed & re-diagnosed 3 times in 15 years. Each time it’s been a Rheumatologist who made the final diagnosis, though the first GP said he was sure it is. The rheumy knows just where to ‘prod’ you to see if it’s fibro. There are 18 points on the body which respond with pain. When first diagnosed I had 14 out of18 points positive, last year the rheumy reported in writing that I had a full house, 18/18. I did wonder why she was prodding me all over as I’d been referred for inflammatory arthritis!! Just one small point. I’m afraid you will find your ‘energy is limited’ with fibromyalgia…most of us do! The steroids don’t help my fibro at all…maybe on a high dosage it gave me ‘false energy’ by making me feel ‘wired’, but the pains feel different & are in different places (mainly). I hope this helps a little. I was not referred to a rheumy in the first 18 months of polymyalgia. I worked regularly with my GP…but then his diagnosis was correct! I was only referred due to arthritis, but the rheumy wanted to check out all my diseases, which is good! Personally, I would wait & see what the rheumy says first, & if he/she confirms misdiagnosis & if he/she confirms fibromyalgia! Then think of your next step re complaint etc as you will have the facts confirmed by a specialist, but it’s your choice, of course.
I think your family is right. It won't take much in energy as it's highly unlikely any action will be taken anyway, but it might make the practice GP's concerned sit up and take notice and be a little less cavalier in the future. Just a thought ................
Your family may be indignant about your treatment - and rightly so, but they are not the ones going to be stressed by any ongoing complaint procedure which inevitably will be drawn out. As you say energy is at a premium for you.
Others may benefit from your complaint in their future treatment, so some would say you should go ahead for that reason alone, but at the end of the day it’s your decision, You cannot undo what’s been done..and it will be difficult to prove steroids have done you irreparable damage.
The other thing to bear in mind is whether you want your relationship with your GP to be affected by this. It shouldn't be... but! my GP had to review my medication. He was horrified to find me on 15mg (who had been prescribing it??) this is the burning question isn't it? and if you decide not to make a formal complaint, you could at least enquire informally into how it could have happened.
Let it go, let every stressful situation that you can or can’t control go. I have had fibromyalgia and chronic fatigue for 30+ years it was called fibrositis back then and now has a new name which i keep forgetting. I was diagnosed with PMR ( very different pain) 3 years ago and I am finally off of PREDNISONE which as stated by others does nothing for fibromyalgia. I have found that STRESS is a major contributor to both conditions. What works for me is writing letters and then shredding them. I get my feelings out and do not have to go back and forth with the agitators. We live in such stressful times that we need to treat ourselves and others with great care. Have a happy and peaceful New Year.
Thank you for all the replies, which have all helped me to process what has happened and see the way forward.
The idea that I may have, or have had, both PMR and fibro is a good one. As it was so long ago the rheumy could not totally rule out the possibility that I had PMR then. My symptoms did fit at that time. So I don't think a lot will be achieved by complaining. I have changed surgeries since then and presented at my present surgery with severe arthritis (dismissed as PMR by previous surgery!) so no-one, including me, focused on my PMR.
I do think I now have fibro. My present symptoms fit that more closely - the 'tender spots', the muscle twitches, restless leg syndrome, other tender areas which come and go, sometimes within an hour, severe insomnia. There is obviously some overlap between the two conditions, and hopefully by reducing the steroids it will become clearer whether I have both.
I have a long history of ME, which never went away completely, so weirdly I feel happier to have fibro (though obviously I'd rather be well!) as I feel I am on familiar ground and more able to take control. I also have 2 close friends with fibro who can give me good advice.
One problematic aspect is that PMR is often accompanied by myofascial pain syndrome. Both of them create trigger spots/tender areas and before I was diagnosed and I had done a LOT of research into what it was I had had for 5 years that disabled me so badly I couldn't decide whether the trigger points matched fibro or not. I was short of a couple on the map but I had others. My rheumy here unerringly finds them - and has never suggested the PMR diagnosis is wrong. The crucial point was my response to pred - an absolute miracle in under 6 hours. Not all the pain had gone in that time but the difference was massive. More of the pain went in the following 4 or 5 months.
I also have a history of what would now be called ME/CFS, it was yuppie flu when I had it so not really taken seriously. But the mix of the symptoms from all 3 makes for a complicated decision as to what it is. However - since there is no cure, what you need is the best symptomatic management you can find.
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