In despair

Been to my GP about my widespread muscle pain and tenderness. My muscles are actually sore to the touch. Started positive by advising bloods to be taken to test for inflammatory conditions eg. polymyalgia and she would check my cholesterol as well. Back for results yesterday. All blood tests normal so doesn't know what's causing it. She is reluctant to believe it may be statin related even though pain has been worse since I increased rosuvastatin to 20mg from 10mg and refuses to change statin as she says it's my consultant at lipid clinic's decision. Basically she has decided pain is postural (!!!) and advises a workplace assessment from occupational health and given a prescription for amitriptyline to help me sleep. I only can't sleep because of the pain. To make matters worse my cholesterol has gone up to 7.9 since starting 20mg rosuvastatin from 7.2 on 10mg! She tried to blame this on Christmas and just ignored me when I said I had eaten, drunk and done nothing different over the festive period as I was working as usual every day. I sat in my car when I left the surgery and burst into tears. I really am about to give up on the medical profession. Not back to lipid clinic until July. AAAAARRRRRRGGGGG!

17 Replies

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  • If it were me I would stop the 20mg and go back to 10mg but there is not a doctor in the universe who would advise you to do that.

    I am really sorry that she has prescribed amitryptyline for you..it's an anti-depressant which you probably don't need and that may give you side effects as well.

    Why are some doctors so reluctant to accept muscle pain as a side effect?

  • Hi Aliwally - I'm considering stopping my statins until my next lipid clinic appointment to see if there is any improvement in my symptoms. I don't think 4 months of my cholesterol being really high will have a detrimental effect on my health in the great scheme of things. Sometimes you just need to make your own decisions for your health. It really worries me that statin side effects may be under reported. How many people are there going to their GP who are on statins and having pain when their symptoms are dismissed?

  • I probably could but might not because the lipid clinic will talk me out of stopping the statin and I think the only way to see if my symptoms improve is to go cold turkey rather than try a lower dose, alternative statin which I have all tried before. If I arrive for my appointment in July and announce I have been off statins since Feb there's not a lot they can say.

  • Poor you seahorse. I work on the principle that, as it is my body, then I have the right to decide. The doctors and consultants are there to give me the benefit of their considerable knowledge but, if I listen or not to their advice, is my choice.

  • At least if you stop, you can go armed with the information about how you feel.

    Have they ever mentioned apheresis to you as an alternative ? I know it's a big step, not to be undertaken lightly, but it sounds like stains are just making your life totally miserable.

  • Yes my consultant has mentioned apheresis. There is one other man in Edinburgh who has it at my hospital. I don't really want to go down that root at this stage as I have no strong family history of heart disease - just my brother who died of a heart attack at 52 but he was a life-long heavy smoker, drinker and also had kidney failure and then a kidney transplant which I have been advised are all risk factors for heart problems. Consultant was of the same opinion as me on this.

  • I really feel for you. Been there, done that!! I only had statins because of diabetes but really reacted to them badly as you do. I now take a combination of alternatives including plant stanaols and omega 3 which keep me down in the 6's. I remember the days before the great big statin trial when a reading of 7 and below was satisfactory - then the statins could give lower readings and were pushed on to as many folk as possible, and personally don't really trust them .The amyltriptaline is not prescribed as an antidepressant - it is given as a muscle relaxant and takes several weeks to set in!!! I had severe pain until a recent operation where the anaesthetic possibly went wonky and a woke up in a pain well above the recording scale, but over the following week the statin induced pain left me!!! A bit drastic and probably unrepeatable. possibly well worth researching YOUR actual risk,

  • Hi Seahorse,

    This is a long story, I had a heart attack at age 56yrs, diagnosed with FH, and had a double heart by pass, recovered very well, then after about 4 months, the pain and misery set in, the only thing I could put it down to was the statins, I was sent to a Lipid clinic for 2years, trying all sorts of new statins etc., in the end I had a long talk with my GP and said I would rather have ten years of living life to the full, than 15 years of pain. He agreed and I stopped all statins, wonderful my life returned, I have a very good diet, don't smoke,enjoy a few red wines when entertaining, and my cholestral is anything between 5.9 and 6.9. I have regular blood tests to keep an eye on it, and I have a good GP, and an understanding Cardioligist. This was all 14 years ago,and I am now 70years old.a few other health issues, but other than that a good life. My answer to you is do what your body tells you, tell your GP what you are doing as I think it should be written down somewhere, and I hope this all helps with your decision, Good Luck, regards Pandr

  • Hi seahorse, I'm really sorry you are having such a frustrating time and I don't blame you for getting so upset, I would be too. You don't say whether your high cholesterol is because of something like FH or not. I would never recommend for you to come off your statins without the doctors knowledge but I do know there are a lot of things you can do to help lower your cholesterol naturally which may help whilst taking the statins. The British Heart Foundation have excellent free booklets on reducing cholesterol and information about different statins too which are easy to download. I think you may find some information about statins in "medicines for your heart" as well as the "reducing your cholesterol" booklet. There are many screening companies that carry out cholesterol testing privately if you need reassurance before July. As for the muscle pains, it may be worth making a note of any other symptoms you get however minor they may seem and make an appointment before July if the muscle pain etc doesn't go.

  • If I were you, I'd stop, see if it goes away, then restart slowly and see if it comes back. You've time for a go or two at that I think.

    I stopped my statin a while ago, on my own as I was on the other side of Europe when I got pain that made it hard to breathe. After further experimentation, I suspect it was an inactive ingredient in one brand disagreeing with me. So even if stopping cures it, it might not be the statin as such!

  • Thanks to everyone for taking the time to reply. I am turning into a right whinger!! Only statins I haven't tried are pravastatin and fluvastatin. Been on various statins (usually 40mg) now for 17 years and the problems have built up over time but this is the first time that it has got to the stage where it is affecting my life. Maybe it's just caused by getting older (47 now) but I feel 87. I suppose the only way I would ever know for sure if it is statin related is never to have taken them in the first place.

  • Evening Seahorse , along with most of the other recent replies i am sure we could write a book about Statins !!! , i had a TYPE 2 NSTEMI in mid December 2012 & together with other medication to aid with my recovery i was prescribed & started off in hospital ""80MG"" a day of ATORVASTATIN believing this was the norm , its only after coming to terms with was has happened that i have begun to question the dosage or need for such medicines . Side affects or sensitivity to these medicines are plainly common & widespread , my cholesteral level on entering hospital was a healthy 4.7 but because i had a Blip it was decided to try & lower it to around 3 ??? .

    I am 59 yrs old , was a smoker until this episode & have talked to my GP on 3 separate occasions since leaving hospital , whilst reluctant to make changes to my long term meds they have been helpful in other areas , i am due to see my Cardio Consultant on the 28th of this month & i know my body better than anyone so i will do my utmost to come off this [HorseTablet] as i call it. As stated by PANDR earlier 10-12 good years has got to be better than 15 years of side effect Hell . Your body - your choice - your well being - your Life , i am sure you will make the right decision but what ever you decide dont stop asking questions of all available Consultants - GPs etc . Good Luck in your quest for Health & Happiness . TEDD

  • I am sorry to hear about the pain in your legs, I was taking statins after awhile I started have muscle fatigue, I took it upon myself to stop taking statins (I did not inform my doctor) after just two days the muscle fatigue stopped, I have had to go back on statins as my cholestor,l has gone to 9 but if I get any side effects I will come off statins again, I am lucky that I do not have heart problems, blood pressure ok don't smoke 1 stone overweight, doctors make out that statins are the wonder drug of the time, they do help alot of people, a lot of people are disillusioned with statins.

  • Hi Seahorse, personally I would not take amitriptyline. I would also try to eat less fat and have more exercise. I would also stop my statin for the moment. You could have half a grapefruit or a glass of grapefruit juice at breakfast and could try cholesteriol lowering spreads or yoghurts etc (beware, they are expensive). Trying to keep engaged socially can lower stress levels and help with relaxing. I wish you the best.

  • Hi Seahorse

    I reluctantly tried statins last year but have stopped taking them because of the side effects. Please try without them even if only for a while, the muscle pain is almot certainly caused by them and damage done could be permanent if you continue. There is so much negative debate now about the benefits of taking statins, and has been for several years, the medical profession should start to take notice but for some unexplicable reason don't. Read all you can on this site and others...google the 'Statin debate'...then make your own informed decision, I hope you decide the right way to go, good luck.

  • don't despair gentleman.with powerful heart healthy nutrients you can get relief from your painful problems.main stream doctors never tell us about the side effects of statins.they cause muscle pain,fatigue bloodsugar elevation and depleting a vital enzyme called coq10 which energises the heart to function to the optimal.coq10 is not only a heart nutrient ,it is vital to cellular energy.take coq10,d ribose, acetyl l carnitine,astaxanthin and other anti oxidants multivitamins.you will see tremendous improvement!

  • Hi,

    Reading some of the comments, I am getting lost in the technical details. My strong believe is that GP should refere one to a consultant before giving any medication for Cholesterol. My life style change did not help me with my cholesterol, GP's answer is medication. Are there any othe tests available othe than blood test? Can a x-ray give any indication?. What is coq10?

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