Four years ago following having a stent, I was given statins. Over the course of a year I tried every statin and other cholesterol lowering drug, before my consultant agreed I was intolerant of them all and took me off them. Each one caused severe muscle pain and exhaustion combined with other symptoms which prevented me from taking any real exercise. Once off the drugs I gradually improved over the course of the following 9 months, but then started to experience muscle pain and fatigue again. I had blood tests done and the end result was a diagnosis of fibromyalgia, which is given only after the elimination of other conditions. I would be interested to discover whether there is either some genetic or causal link between my intolerance to statins and the development of fibromyalgia? Did I have an underlying myalgia when trialling the statins or did the statins trigger the condition? Perhaps I am just genetically prone to develop this condition. I guess I'll never know, but would be interested to hear others' experiences of long term muscle pain and fatigue which has either continued or recurred after stopping statins.
Statins and Fibromyalgia: Four years ago... - Cholesterol Support
Statins and Fibromyalgia
If you go over to the Fibromyalgia site on HU, you could ask members for their experiences. It does look as though there may be a connection.
I think there is a hole in your logic. You said that every statin caused you muscle pain and exhaustion - but after you stopped using them you still had muscle pain and exhaustion and was then finally diagnosed with fibromyalga. My logic would tell me then that maybe there is a strong possibility that the statins had nothing to do with your muscle pains and exhaustion. Muscle pains and exhaustion don't kill you as quickly and silently as a blocked artery - I would be looking at going back onto the statins. I have had extremely high cholesterol for over 30 years - and was finally diagnosed with calcification of my arteries caused by excess plaque in the arteries. I went onto a low dose of Crestor (5 mg) and with other changes to my diet, I reduced my cholesterol level by more than 50% in 3 months. I will be sticking to this dosage of Crestor and a 100 mg aspirin each day forever now ( at age 70)
If you read it again you will see that I said that the pain and exhaustion improved after stopping statins and then recurred almost a year later. Nothing to do with logic.
Sorry - I did miss the bit about improving AFTER coming off the drugs. However, this could still be coincidental . What dosage of statins were you taking.
Thanks Bazza. I was on the starting dose for each one I tried, with breaks of 2-3 weeks in between each drug, during which symptoms improved. As you say it could all be coincidental. I just felt it was strange, having never suffered these symptoms before in my life, for me to develop fibro, which has identical symptoms, so soon after the trials of statins and wondered whether anyone else had had a similar experience.
Many illnesses are caused by inflammation in the body. Sugar and a diet that is high in simple carbohydrates - ie. white bread, pizza, white pasta, white rice, white potatoes, packaged goods with hidden sugars - contributes significantly to inflammation in the body.
Consider taking a CRP test which measures inflammation and while your at it, get the hb-AIC test to determine your blood sugar level average for the last 3 months; also have the fasting blood sugar tested.
This might lead you down the path of altering your diet to improve your health.
Rice, pasta, potatoes and bread, if we eliminated the four from weekly food what other options do we have?
Some people eat rice and beans, potatoes and beans bread and beans, pasta with veg!
This is how I have adopted my diet to avoid the high GI foods that you have mentioned, replacing them with low GI replacements) . White rice is replaced by brown rice or barley ( however my understanding is that white Basmati rice is low GI) . Pasta normally made from white flour is replaced by wholemeal pasta. Potatoes are replaced by sweet potatoes. White bread is replaced by high quality ( an expensive) whole grain breads which specifically state their measured GI number.
AS you say, the GI of a meal results from the total of that meal - so for example mixing any high GI food with a low GI food lowers the overall GI load of the meal. For me , mostly I was eating too much product made from processed white flour. Now I eat much more vegs, fruit, fish, barley, oats, beans, legumes. Fortunately I like spiced foods so with my large spice cabinet, I can have a highly varied diet 
You can eat brown rice, whole wheat pasta, quinoa, couscous, sweet potato. Except for the quinoa, I generally avoid these things having them infrequently usually twice per month. I prefer to have chick peas and lentils with quinoa and lots of vegetables including sauteed spinach and a daily arugula salad.
However, having brown rice and whole wheat pasta in moderation is not harmful. You can still have them every other day. I prefer not to so I can further reduce my body fat and see the impact on my cholesterol levels.
Eating lots of vegetables prepared in tasty recipes is very satisfying. My wife make a stuffed red pepper with couscous, feta, chick peas, lentils and some tasty seasoning, along with extra virgin olive oil.
Barley also has a texture similar to other grains and is very good for lowering cholesterol levels. My wife makes it in a soup the recipe for which I have already posted on this website. 'Cholesterol-Busting Super Soup'.
Hi Sandy, yes we could all live till we are 80 and spend all that time struggling to control our weight, and health by refusing "nice" food and eating only rabbit food, but is that really living? Apparently being on a diet alone causes cortisol to soar so a permanent diet change would sky rocket cortisol.
Thanks for your reply and the information. I had the CRP test which showed no inflammation. This is common in fibromyalgia, but was also the case when tested while taking statins. I have my bloods checked every 6 months through the cardiac clinic and blood sugar is tested too. All tests come back as within the normal range except for cholesterol. I do eat a low carb diet, having mainly protein and vegetables or salad every day. Although I am prone to indulging in a little chocolate I limit that to a small amount of 80% cocoa chocolate. I do find exercise helps provided that it is not overdone and I take painkillers before I go out walking so that I can gain the most benefit from that. I have to pace my day and there is a limit to what I can do without triggering a flare. Hopefully some more research will be done into this condition and its cause
I have fibromyalgia and high cholesterol as well. I am skinny and eat a fairly healthy diet with lots of fruits and vegetables. My point is there is a significant genetic factor that you cannot change. Your body makes cholesterol and your diet will not change that. I cannot afford to lose weight so I am looking for a solution to my high cholesterol since I am unable to tolerate the statins. I would like to make one more point: The muscle pain and weakness caused by the statins is a serious side effect and should not be ignored. These symptoms indicate a deterioration of the muscles. This is called rhabdomyositis and can become a disability!
Hi Nancy, you are so right when you say that the genetic factor of heart disease is impossible to beat. I come from a family wherein strokes and heart attacks go back to my grandfather on both sides. My mother was convinced that exercise was the cure all for everything, and continued to do as much exercise as she could, all her life, even after suffering a stroke at the age of 58. She also did not drink and avoided any food that might be labelled as unhealthy, eating very little meat, eating mostly fruit and veg. As I said, she suffered a stroke at the age of 58 then another at 81 which killed her. During the last 6 years of her life she took a statin, as prescribed by hew doctor, so all her good eating and exercise did nothing for her. My father, who rarely exercised, and ate a high fat diet, was diagnosed with high cholesterol with a work medical at 50. Statins were not prescribed then, and he did get his numbers down, with a strict low fat diet. Which lasted only until he was told that his cholesterol was OK, then the "bad" food crept back in. He lasted until he was 87 (took statins for the last 5 years of his life), when he too died from a stroke.
I was anorexic for 7 years and after recovering ate sparingly and walked a lot, I actually weighed 50kg when I had a stroke and when taken into hospital my cholesterol was double what it was deemed it should be. I was put on Lescol for about a year and my cholesterol came down, but not to the figure that the doctors wanted, because I was battling genetically high cholesterol. I continue to try to eat sparingly now, and rarely drink any more, and my numbers hover around slightly above the acceptable mark. The doctor are not happy, but with my muscular problems caused by the stroke, I do not need to exacerbate them by taking statins, which cannot beat my genetic tendency for high cholesterol
Hi Bazza, I am thinking that I have a lot of built up plaque in my arteries, how did they fairness this in you? Do you believe that the statin helped to clear some of the plaque? How strict is your diet, like unenjoyable to wake up diet, or just a tweak in not eating what we all know we should not eat but still do?
I have changed my diet considerably - but for the better I believe. I now avoid as much as I can commercially manufactured foods and anything that uses white refined flour and added sugar. So I eat a lot more fruit and vegetables, less meat , more beans, more wholegrains and wholegrain breads. I do a LOT of exercise (being a runner) but exercise did not seem to improve my cholesterol readings at all. I have had no problems taking CRESTOR statins - started out on 5mg low dose but have increased recently to 10 mg - so far no problems. If you are concerned about plaque levels a calcium score test will reveal how much hardening/calcification of the arteries you have which in turn is a reliable indicator of how much soft unstable plaque that you have. The calcified plaque is a nett result of your entire life to date and cannot be reduced - only it's future growth can be limited. At the end of the day, I believe that nobody really knows the reason for the development of plaque in the arteries - just lots of theories and conflicting "studies". I am 71YO and accept that one day in the not too distant future, I must die. Statistically speaking , at my age , it will most likely come from a heart attack or some form of cancer. As a runner, I regularly take my heart rate up to 95-100% of it's true maximum ( not the so called maximum that the medicos calculate) and I am hoping that it will be the heart that takes me out - I have seen people die slowly from cancer and I don't want that!!!!
I was taking Crestor for the past 10-15 years without any problems but started getting excruciating cramps in my legs at night earlier this year & my dr changed my meds to another in the statin family which gave me acking in my legs, now I stopped but am weaning off statins and am watching my diet more & taking Coq10, collagen & am seeing an improvement
This is extremely interesting to read as I went on many statins for cholesterol slightly high (I gather in the period when the pharmaceutical reps were pushing GP's to give statins out)...... however, I could not bear the muscle pain any more and when I came back from Disneyland (May) with granddaughter, the GP spoke to me on the phone and said stop them for 8 weeks - I did this and felt slightly better so she told me to keep off them until another cholesterol/blood test in a few months time. When I went to see her in December of that year (2015) she told me that my cholesterol was fine and 'there was no need for me to be on them anyway' - heh she put me on them to start with !!!
Although much better and my chiropractor who's wife is a herbalist recommended a good quality turmeric tablet once or twice a day and they both take them. He told me it is like a nurofen without the side effects but helps the inflammation in the body. I feel they have improved considerably but since this cold, wet weather I am feeling more pain in knees and arms/fingers and hope, as you stated, the statins have not triggered fibromyalgia. My doctor and chiropractor (he is a medical doctor as well) have both said ..... we don't think you have this condition and I have been having blood tests every 3 months - 2 more to go for the year and they have come back ok so fingers crossed.
I definitely think that the statins have caused muscle pain which I never ever suffered from before.
Thanks for your reply Brendamary. That is really interesting. Fibromyalgia is diagnosed by eliminating other possible illnesses. There is no specific blood test for it. The blood tests rule out other possible conditions. I do hope you don't have it and your muscle pain reduces further.
Many thanks Florence. My chiropractor advised me not to be given whatever drug (not sure of name) a GP may give for muscle pain as this is a steroid and has horrid side effects including weight gain and possible blindness in the longer term - scary?
Sounds nasty. I have to use paracetamol as so many of the other treatments involving NSAIDs have risks for heart disease. I will give turmeric a try. Thanks for that information.
You can buy turmeric powder in super market. This is better than tablet. You can use 1/4 tea spoon of powder in porridge, I use turmeric powder, cinnamon powder and salt in my porridge. Has been good to me.
Tablets can be very expensive!
Thanks Bala.
The chiropractor, who trained in London as an orthopaedic doctor reccomended.....
Pukka Organic Turmeric Active - 30 Capsules
£14.35
Shop
+£2.00 shipping
These were good and he recommends Pukka
but now take Lamberts, The professional range, high potency Turmeric 10,000 providing 95% curcumins. 120 tablets so about £26 Ish which is what he and his wife have.
Take with two small black peppercorns as get into system quicker.
Good luck x
Thanks for your help. I'll let you know how I get on. x
Which turmeric tablet are you taking. Is it for your cholesterol.
Statins have many side effects and have been shown (according to the internet) to do nothing for women. however here is a link wrt fibromyalgia spacedoc.com/articles/fibro...
Thanks for this link. My consultant also told me that the statins were unlikely to be of much benefit for me as a woman so was not concerned about taking me off them. He felt that it would be more beneficial for me to be able to take sufficient exercise.
That's why I have them, infrequently, as noted.
This is my own anecdotal evidence from personal experience - I don't think statins always cause muscle pain, but rather will inflame already weakened joints and muscles so that you notice them more.
Hi Florence, I have been on Statins since I had a Stroke (which is believed to have been due to AF) in June 2012. I was also discovered to have low thyroid at the same time so I am also on levothyroxine plus Beta-blockers and Dabigatran.
I tolerated 40mg of Simvastatin for just under 3 years before starting to have calf muscle cramps at night and then during the day. Various issues were checked including blood tests and vascular checks on my legs which were all fine. I changed to Atorvastatin 10mg and the muscle pain gradually eased until 6 weeks ago when it became severe. In fact even worse than before. I changed to 20mg of Pravastatin almost 5 weeks ago but pain continued to worsen and walking is very difficult partly because of the calf muscles and more recently in upper legs. I stopped statins completely 2 weeks ago, there is little change yet but my GP told me to stay off for 8 weeks to be sure that it is the statins causing the problems. Ironically my cholesterol is quite low but the GP had advised me that for someone with AF it couldn't be too low!
I haven't heard of fibromyalgia until now but am concerned that not enough is known about the long term or even medium term side effects of statins. I also suffer from fatigue but that could be either the AF or Low Thyroid of course.
Hi Ray, I suffered a stroke 21 years ago, and was put immediately onto Effexor. Soon after I came out of hospital (6 months) I noticed tired aching calves. This has continued till the present day. I stopped the statin about 1 year after the stroke, despite being told many times that my cholesterol is too high. I have had to go back onto statins this week, unhappily. Do you think that the statins could have caused the ongoing calf fatigue? I, personally, believe that my cholesterol is high because that is my biological make up, before the stroke I was very healthy, yet i went into hospital after the stroke with a cholesterol almost double what is recomended
Hi Maree, I have been off statins now for 8 months and have had an incredible range of blood tests and scans without finding anything significant that could have been the cause so it is likely to have been the statins that caused my muscle problems. I have made a gradual and only partial recovery with a lot of special exercises and some physiotherapy. I think statins are over prescribed but I'm sure that experienced members will have some more expert comment that I can give.
Best wishes and hope things improve for you.
I have had fibromyalgia for 20 years, wuite severe. I went into remission for 3 years. I went on a statin and the muscle pain came on, my doctor ignored my concern until I had a full blown in the bed relapse for a long time making it difficult to work, so for me Statins cause my fibromyalgia to flare up
I have the exact same issue and if I recall correctly the two conditions felt very similar. I just thought it may have been my first major flare of fibro but now I'm beginning to wonder, if there is a corrilation. It sees like the evidence is pointing towards it. Do you have any updates?
I would say that my symptoms on statins were more severe than I currently experience generally with fibro unless I have a flare. I have not taken statins since that time with the agreement of my consultant who told me they probably wouldn't benefit me in any case as a woman. My cholesterol remained high until almost two years ago when I started taking both Vitamin B12 and Biotin supplements to help with fatigue and alopecia. When I had my annual cholesterol check about 9 months after that I was amazed that my cholesterol had lowered by almost 2 points for the first time in ten years and was deemed to be at an acceptable level as I have a high HDL level. Although I can't prove that the vitamins have caused a decrease in cholesterol levels, nothing else had changed in my life in terms of diet etc. so I can only assume it was the vitamins. Having looked up a connection on the internet it appears there may be a link between cholesterol and these vitamins. I will find out in January whether the improvement has continued for another year.
This also happened to me. I had no muscle pain until I was given statins. It took 5 years to diagnose fibromyalgia. I stopped taking the statins 4 months after starting them against all the advice from doctors and nurses. That was hard to do. Very frightening. They tell you that you need them for life. I read the book by Dr Malcolm Kendrick "The Great Cholesterol Con" and did a lot of research and took the personal decision to stop statins. Before being prescribed them, I could walk long distances, had no pain, was alert and working while attending college to become a counsellor, I had a fair memory for my age (58) and quite independent and confident. On statins I was forgetful, confused and in pain. Walking 100 metres left me needing a seat. When I came off statins I recovered well and returned to work. After 13 months I was no longer fit to work. One day at work resulted in two days of rest. I have not recovered. My life is severely limited by the fibromyalgia. Since all this occurred, I discovered that my elderly sister also has had fibromyalgia for over 20 years, is on statins but says she did not tie in the statins with her fibromyalgia because she takes a number of medications so it was hard to identify. I can't say for definite that the statins caused the fibromyalgia, or if it triggered it, if it runs in my family anyway or if the fibromyalgia was triggered by the statins because I was genetically predisposed or susceptible to fibromyalgia . Many people get the illness and have never taken statins. I can only say what I feel, which is not scientific, that I think my fibromyalgia was triggered by the statins. Just a personal opinion. I hope hearing my experience gives you a little comfort of some sort. That you are not alone. Ruby
Thank you Ruby. It is good to hear from someone with similar experience. It would take many similar cases for consideration of a link to be investigated. It would be of little benefit to us personally as fibromylagia is a chronic condition and we are stuck with it, but for others to know the risk, however small, of triggering this condition would certainly be to their advantage. Developing a condition which severely limits physical activity is most definitely not conducive to heart health. I had a good relationship with my GP, but I remember when I suggested the possible link to statins, I could see a flash of extreme irritation cross his face. This reaction puzzled me and I sometimes wonder whether he knew something I didn't.
bmj.com/content/337/bmj.a22...
Hi Florence. Sorry for taking a while. This link above is from the British Medical Journal. It's not complete. You have to subscribe to the journal to read it all, but there is so much information starting to filter on to the web to see that statin induced myopathy is looking more and more clear. It feels to me, satisfying to see, even 'though it's not completely confirmed by a long way. Knowing that so many others have a similar experience gives a little hope as well.
I also once said to my doctor that I suspected that statins may have caused or triggered my Fibromyalgia and he gave me a look of disgust and dismissal. Like it was ridiculous. That particular doctor up until that point had been very respectful of me and my opinions. So his reaction surprised me. Doctors sometimes seem to have been brain washed into believing in statins like a religion. I experienced some lying and trickery from them as they tried to make me take statins. I had one heart event in 2012 which was the beginning of statins. That was when I came off them after c4 months because of the pain. I had another heart event in 2017 and in trying to convince me to take statins, they told me they had advanced in knowledge and they could now offer me a new form of statin, a lower dosage, which would give me fewer side effects, Then a cardiac nurse finished off the softening up process by telling me how effective they were and that I should just try them for 3 months.
So I ended up agreeing to that. When professionals tell you that and you're sitting in a hospital bed after being blue lighted by ambulance, it's difficult to refuse.
However, when I filled the prescription as I left hospital and opened up the bag, it wasn't new at all! Because I had been researching statins for 5 years, I knew the one prescribed had been on the market for at least 7 years. I threw it in the bin in disgust.
I was in two separate hospitals for each heart problem, 5 years apart. The first hospital told me all about my heart and arteries and that everything was all fine and dandy and I could carry on as normal. Turned out 5 years later at the other hospital that all was NOT fine. But they just told me that so I wouldn't worry.
Needless to say, being lied to hasn't helped me to trust them and that is scary. I have huge respect for doctors and medicine, but I will never trust from now on. I will request more information all the time.
Doctors and scientists are just humans. They get embarrassed and their pride and ego hurts like everyone else. They can get unreasonable like everyone else. Add money to that mix and you have very real dangers. So while I am very polite and respectful, I ask questions, do research and get copies of my medical notes before accepting any treatment nowadays. Thanks for listening. Ruby
Thanks for sharing Ruby. All you have said has been very interesting to me and good to know I am not alone in my experience. I remember a similar scenario with HRT when I was told by my GP at the time, that I really should take HRT as it would be so good for me! Now we know how untrue that has turned out to be. Luckily I have always had a natural wariness of both medication and GPs and avoid both unless in dire need. Best wishes to you, Florence
youtu.be/mNDqtZWbSpM In case you haven't seen this, it's not about fibromyalgia. It's about statins. If the link doesn't work, look up "Statin Nation" on YouTube or Google Dr Malcolm Kendrick and watch on his website.
I was put on Statins at the insistence of my GP despite another in the practice not considering that I needed them. Was on Simvastatin, leg muscles were agony, after years of always sleeping well I had vivid horrific nightmares. Got changed to Atorvastatin and reaction no better, affected my work and left my ability to cope in a stressful job very difficult. Bullying and work pressure added to problems, despite stopping the statins my pain continued and sleep has now been very poor for over 10 years. I was sent to a rheumatology consultant who informed me that I had Fibromyalgia. Had no idea what it was beforehand. Particularly unhelpful, no follow up or support from GP's and any suggestions of a link between statins pain and fibromyalgia completely trashed. Currently having a flare up of burning pains, muscles spasm and depression. Feeling like the whole establishment doesn't want to hear what statins do so nobody prepared to look into a connection that I strongly suspect exists. I have been a health professional all my life, statins played a large part in destroying my career, confidence and health. Why are they being so blithely defended when they have such vicious side effects? I met an anaesthetist who said his mother had been damaged so badly she was in a wheelchair from taking statins, and a surprisingly large number of others I know within a small group of people have been harmed by taking these underestimated drugs. If LSD can give "bad trips" decades after using them why don't the medical profession want to own up to the long term effects of these drugs? Simple possibility is profit, it's not unknown in the pharmaceutical market. Maybe it is time for a proper study, not funded by the drug companies or anyone else with a vested interest.
Hi Florence
Just read your post re taking statins 4 years ago which gave you muscle aches. Sorry to hear that.
How are you doing now?
I have been a lifelong cyclist -70 now.
Competitive till age 45 and able to ride my bike at 25 av.
Had a 'heart scare' climbing a steep hill in May 16 - age 66
Many tests later, severe cardiac atherosclerosis diagnosed (familial atherosclerosis)
And had a triple bypass in Feb 17, which went very well! thanks NHS!
Here's my Statin Story-
I was started on Simvastatin 5 mgs in Dec 16 and after just 3 doses I had muscle aches.
Told Dr about this and he changed them to Rosuvastatin.
However, the aches continued and I told him the aches were still there.
At this point, I feel he should have taken me off ALL statins.
He didn't, so I stopped them myself at the 12 week mark.
However, despite stopping them over 3 years ago now, the aches not only haven't gone away, but have got much worse.
I still ride my bike though, every Sunday, a lifelong habit!
At about 10-12 av - the speed of a leisure cyclist.
The Sunday ride before my first statin in Dec 16, I rode (age 67) with my group on a lumpy course at 17 av.
After the first 3 simvastatin doses, my speed dropped to 12 av.
Taking those statins, I can honestly say, was THE biggest mistake of my life!
All the best!
Alps
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