Briefly, during a short 12 week course of 5mgs rosuvastatin ending in April 17, I got muscle aches, so stopped them.
However, even though I stopped almost 3 years ago now, the muscle aches have progressed.
Looking for answers, I have been seen by neurologists and rheumatologists, both privately and on the NHS.
I have had 8 normal CK tests.
And my CPR blood markers (for inflammation) by Medichecks aslo have always been normal.
I have had 4 MRI's, 2 EMG's, 1 muscle biopsy, 2 ultrasounds and ALL have been normal too, except for 1 MRI which showed low grade myositis and another that showed 'oedema'.
However, the specialists say that it can ONLY be myositis when ALL the tests concur, so they are saying that it is NON-SPECIFIC (ie. Non-proven) and definitely not myositis.
So, considering that my muscle aches have been progressing, can myositis possibly be a factor, even though the many tests say otherwise?
As I've 'read' that myositis can exist without ANY external signs at all.
I've spent years thinking I had myositis again after taking similar meds. Had so many tests, scans come back negative that I'd given up & just accepted I was crippled for no apparent reason.
Then this came to my attention & it fits with my symptoms perfectly and appears to have no definitive way to diagnose it!
Polymyalgia Rheumatica possibly caused by the same group of meds!
Muscle pain in hips, upper thighs, buttocks & shoulders, upper arms which gets much worse in mornings, especially if I eat gluten or other inflammatory foods.
Waking up drenched in sweat during the night.
Severe headaches
Visual disturbances
Chronic fatigue...
Maybe worth having a read if you have similar symptoms
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Having looked at your profile I see your pain is lower down the legs which I also had at one point & again no Drs could diagnose. That turned out to be my piriformis muscle in my buttock causing the chronic pain further down my thigh. Diagnosed by a sports fitness physio, treated with deep massage and acupuncture and that particular pain is now long gone.
If you read my posts you will see that my problem is achy (never painful) muscles, which started within a few days of taking simvastatin
I told my dr about this and he changed it to rosuvastatin, but the aches continued.
I told him about this as well, but he didn't stop them.
At the 12 week mark, I had had enough of the aches and stopped them myself. He definitely should have pulled me off them himself.
Taking these statins was definitely THE biggest mistake of my life!
The aches are 95% in the vastus medialis (I am a keen cyclist! competitive till 45) 5% in the vastus lateralis and the remaning 5% in the upper body.
I have had all the tests and nothing much to show for it, except the 2 results I have described above.
Thanks for suggesting I look into polymyalgia rheumatica, which I have today. i have looked at hundreds of others!
I don't believe it is this as they say the main symptoms are shoulder pain and headaches, weight loss, tiredness and depression, which I never have had.
Looking for answers, I found out I was hypothyroid in May.
However, even though my thyroid meds have brought my blood numbers to where they should be, the aches are still there, and progressing.
I have also been gluten free since August.
What statin meds did you take doublehipster, when, for how long and what are your symptoms now please?
I listed most of my symptoms above, but also have terrible nausea and vomiting if I do any regular physical activity. Exactly the same vomiting, gluten and exercise intolerance I had with a previous autoimmune disease, dermatomyositis in 1994 which is why I've insisted I had an autoimmune disease similar to dermatomyositis when taking statins but Drs told me it was impossible.
I took simvastatin after heart attack and angina aged about 38 from 2001-2008 on and off as they made me feel the same as dermatomyositis with no skin involvement. Also immediately went from stable angina to coronary artery spasms and chest cramps. Insomnia would keep me awake for days, chronic all over pain, serious cognitive impairment, blood pouring from my rear end if I ate cheese, fatigue, headaches, kaleidoscopic vision episodes. I spent the whole summer one year feeling bloody awful when sunbathing in my garden and my GP phoned me shortly afterwards to tell me I had very little or zero vitamin d and if I sit in bright sunlight still I get guts ache and I get confused, if I exercised in sunlight I'd collapse...
Had a series of heart attacks in 2008 and emergency by pass surgery followed by 80mg atorvastatin for less than a week which completely finished me off. I couldn't remember how to drive, use a knife and fork or my friends names. The slightest bit of exercise after surgery led to constant nausea and daily vomiting in the mornings, chronic fatigue, buzzing from arteries or nerves and chronic all over pain and also found out I had type 2 diabetes.
I've had to cope with all of this with very little help from NHS because I refuse to take statins! Despite complaining of myositis like symptoms after taking them!
I got myself well enough to spend the majority of my time out of bed through mostly private Drs and from advice on social media. Taking Ubiquinol, vit d, magnesium and lots more helped but I still feel terrible.
Someone bought polymyalgia rheumatica to my attention which seems to match most of my remaining symptoms perfectly. Yet I've seen so many consultant rheumatologists both NHS and privately and had many scans, tests etc but not one has suggested polymyalgia rheumatica? So I'm going to be demanding steroids from my Dr very soon and will be asking why my symptoms were never matched to a possible polymyalgia rheumatica diagnosis.
The only improvements I've managed to make throughout all of this was when I bought a blood sugar monitor and found my blood sugar was constantly in the 20s. I started fasting for days, a low carb high fat diet, avoiding high glycemic foods and anything containing niacin. I felt a bit more like a human again. After a 4 day fast with no exercise I felt really good but just the slightest bit of exercise or inflammatory food and I once again start vomiting and my muscles around my pelvis hurt and seize up in the mornings. This made me realise 100% exercise and inflammatory food were the drivers behind most of my symptoms.
The intermittent fasting I've continued as I read it resets your immune system and for several days after a fast and zero exercise I feel quite well.
Any time I mentioned I had a muscular problem with gluten or other inflammatory foods involved to consultant rheumatologists they were totally mystified and quite mocking - despite gluten being involved with polymyalgia rheumatica!
I've read some of your other posts where you wrote you have days of respite from the pain.
Maybe you could starve yourself for a few days to see whether you're having an autoimmune response to certain foods which then attacks your muscles? In a similar way polymyalgia rheumatica attacks certain muscles but not others?
I was reluctant to have any hands on therapy after physiotherapy made my shoulders 10x worse and having my thigh muscles deep massaged left me vomiting for days lol. Eventually I got a sports therapist to just get hands on and find what was the origin of the chronic pain surrounding my left hip replacement. I also had constant dull pain around my pelvis but the therapist focused on & found the cause of the chronic pain was my piriformis and the nerve within was causing havoc with lower thigh pain spreading to my right hip up to my ribcage, pain, numbness, spasms, fasciculations...
I can't get my head around having all these expensive scans, appointments can't diagnose an inflamed piriformis yet a £25 massage can!
Apparently the private pain clinic I used are dealing with piriformis problems very regularly. Certainly relieved me of the worst of my pain
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Myositis Diagnosis Problems 
mistaken diagnosis 
How to join Myositis UK
New looking for advice pls 
Newbie here. 
