My Statin Story - Read The Introduction First

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Postby catspajamas » Thu Jun 05, 2008 6:55 pm

At age 59 I was put on 1998 cho 293
By year 2000 ..I had chronic abdominal pain, bloody diarrhea, fatigue, muscle pain, loss of muscle strength, a droopy eye lid, stress incontinence and periferal neuropathy.

I went to Mayos twice..Once in 2000 for the diarrhea. Had extensive GI and Colon tests, MrI, Cat Scan, colonoscopy and other tests...All were negative....their opinion" I was having a reaction to one of the drugs I was on...(was only on two...a b/p pill and the zocor...

In 2001 it was back to Mayos...Had developed vasculitis and the periferal neuropathy was worse and painful in my feet....Extensive neurological tests revealed nothing. Also had a brain scan, spinal tap, and another MRI.
All tests were negative...Again they suggested I had a drug reaction.

Back home , my Dr wouldn't even read Mayos report and told me I couldn't have any reaction to the drugs I was on.
Then I got hypercalcemia ...and broke out in shingles.
Went to a dermatologist...He suggested I go off zocor....What do you know....within a week I was almost my old self...except for the vasculitis and periferal neuropathy.No diarrhea, fatigue was better...and with each passing month my muscles seemed stronger and less pain. No incontinence anymore.

Switched Dr's and he wanted me to try sick again...same with pravacol, crestor and zetia....thats when I said no more statins...I will die with a high cholesteral.....
Since then my chol stays around 229 and I am satisfied...I take a supplement from the health food store and it doesn't bother me....

After 8 years I still have the painful neuropathy...has spread to include my symptoms of a immune disease scleroderma....Still have some muscle weakness, esp in my legs...but generally feel a lot better than I did 8 years ago...

It is my belief that zocor damaged my immune system along with my muscles and nerves....I will probably have to take some sort of pain pill the rest of my life.There are days my feet are so sore I can hardly walk...To try to fall asleep with the burning pain is impossible without a pain pill. Before zocor I was a relatively healthy, active, just to get groceries is a painful ordeal...
zocor ruined my life.......
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My statin story

Postby Adoctor » Sat Jun 07, 2008 5:50 pm

I am a retired general medical practitioner living in the UK, born 1940, and my wife of 43 years C... is a retired nurse. Following years of angina, and two relatively minor coronary occlusions in the later 1990s, I was put on a statin, pravastatin, which I took for about 5 years. The gradual development of a slightly uncertain gait and one or two surprising falls I put down to the effects of advancing years. My own GP was dissatisfied with my cholesterol level, and changed my prescription to simvastatin 40mg daily in the latter half of 2006. About January 2007 I began to develop numbness - in the toes of the right foot initially, but soon followed by the left. Warned by the patient information leaflet I interpreted this as possible peripheral neuropathy, stopped the statin and reported it to my GP. His response was to advise a change to atorvastatin 40mg daily (Lipitor) in case the simvastatin could have been the cause of my symptoms. I was unhappy about taking any statin at all by this time, as I had begun to realize that the effects I had noted could well be a generic characteristic of all statins, so I stopped taking it in May 2007. By this time the paraesthesia in the feet was completely symmetrical and had progressed to involve all the toes of both feet, the ball of the feet, and the heels. My gait remained uncertain, with the occasional fall. After stopping the statin I began to have urinary symptoms - hesitancy, poor stream, interruption of flow, incomplete voiding - which was investigated at our local urology clinic, no obstructive cause found. Other symptoms include intermittent diplopia and variable difficulty in accommodation, tinnitus, and migraine. Recently scotomata have been a problem. The usual suspicion of spinal stenosis had been raised, but not confirmed by MRI scan of lumbar spine in May 2007. A later development (since November 2007) has been sudden but transient weakness in the legs or in the right arm, usually passing off within a few minutes. I have consulted a very senior neurologist, who said little about my suspicions concerning the possible role of statins as the cause of my problem, and what he did say was dismissive. Peripheral nerve conduction studies showed no abnormality and my symptoms were attributed to "radiculitis". Happily in the last 3 months my condition seems to have stabilized and may no longer be deteriorating, although no improvement has been seen. On empirical grounds, I have been self-medicating with Vitamin B Compound tablets, Omega 3 Fish Oil, Co-enzyme Q10.

If a man of my age a hundred or so years ago had developed problems with gait and balance, "cushion feet" and micturition difficulties, together with a suggestion of cranial nerve problems, the diagnosis would have been tabes dorsalis, at least until proved otherwise. I am thinking that Big Pharma may have dragged a greatly dreaded nervous system disease back from the obscurity to which developments in medicine had consigned it. Add this to the list of transient global amnesia, cognitive and behavioural side effects, MS, ALS, Parkinson’s disease, and MSA etc. that all could be precipitated in vulnerable individuals by interference with the cholesterol synthesis pathway. Maybe statins are the new "Great Imitator" de nos jours, depending on individual susceptibility for the form the degenerative disease of the CNS will take in any particular instance, and perhaps on other factors such as alcohol consumption, diet, other drugs taken concomitantly, in addition to genetic make-up.

As the icing on the cake as it were, while all this has been going on C... who was also taking a statin developed a burning sensation in both feet, numbness in the great toes, lightning pains in the legs, and a shuffling gait, and she too has had unexplained difficulties with balance and the odd fall, on one occasion cracking her superior pubic ramus. I think we have both been harmed by taking these drugs, and would never have realized it but for Dr. Graveline’s work in this field and his supportive website and the work done by many contributors there, and I thank him and all of you for it. Actual disinformation comes out from the drug companies or from those with a vested interest in supporting them, such as, that statins are so safe that the number taking them in UK should be doubled, or that on average one would need to take them for 1,400 or was it 14,000 years to have a chance of contracting a neuropathy. Primum non nocere (first of all, do no harm) was the watchword when I was a student.

Post Scriptum - In my 1934 edition of Modern Clinical Syphilology by the great John H. Stokes, he observes on page 1097: "It is still a matter for question as to whether processes such as tabes and general paresis are actual syphilids of the nervous system or whether they should be classified as primary or secondary, direct or indirect toxic degeneration phenomena". Maybe the spirochaete was producing its own natural version of a statin analogous to the effect of red yeast on rice.
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Re: My statin story

Postby vipergg22 » Mon Jun 30, 2008 8:37 pm

The story above could be me , within a month of starting statins back 98 I began getting numbness in both feet which kept getting worse. Of course the dr. said it couldn't be the medicine . Eventually I got the dr. to look at this and we went thru the whole scenario, diabetic tests , mri for back problems , neurologist who did diagnose peripheral neuropathy with no known cause. I kept taking this poison for like 3 years and the PN got worse and worse until I started researching things which led me to the statins I was taking. Statins also caused several other serious side effects such as going to bed at night fine and waking up in the morning with my knees hurting so bad I had to almost crawl to the bathroom . Also add serious gastrointestinal problems where almost any dinner I ate would runn right thru me and I had better be near a bathroom 30 minutes after eating. Also made me short tempered and I'm an easy going guy . I stopped statins and everything pretty much resolved itself except the peripheral neuropathy which continues to slowly get worse . Don't wish this on anyone , any statin users be very aware and don't let the dr, tell you its not the medicine.
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Postby uncle2blade » Sat Jul 12, 2008 5:09 pm

Here we go.
My statin story begins in 1996 with my first visit to a cardiologist and I was put on a low dose of Zocor because my cholesteral numbers were a little on the high side. Almost immediately, I experienced muscle pain in my legs. So, I discontinued Zocor only after a coupe weeks.

The following year when I went for my check up at the cardiologist I explained to him the reaction I had from Zocor so In 1997 he asked me to try a low dose of Lipitor. I had the same reaction and after about a month I discontinued the Lipitor. I didn’t return to the cardiologist until 1999 when he asked me to try a low dose of Crestor in comibnation with a low dose of Zitia.

Initially, I didn’t feel any adverse effects to the combination of Crestor and Zitia and my cholesterol number started getting into the normal range. However, as time went by I did notice some pain in my lower back but nothing I couldn’t handle and thought it was probably some arthritis from standing behind a barber chair for 40 years.

Shortly after that I noticed what I thought was some siactic nerve pain in my left leg. Neither one of these were dilibating but gradually became worse as time went by. I never associated these aches and pains with my medications. These pains gradually worsened over time and in 2006 I could hardly move and went to see an orthopedeic doctor who ran the usual tests - xray, mri, etc. He told me he could see no arthritis or nerve pinch in my back or leg. I assured him that I was in a lot of pain. He believed me but said there was nothing he could see.

Shortly after that, my wife was reading an article and said one of the side effects of Crestor was lower back pain. This was in early January 2007. I immediately discontinued the use of Crestor and Zitia at that time. Almost immediately after the discontinuation of these drugs everything manifested itself. My leg muscles cramped and spasmed and my back hurt constantly. I was generally fatigured all over to the point where I could not function.

Shortly after that I found this forum and started taking the advice of members. I started taking l-cartinene and coq10 and seemed to get some relief. However, I was still pretty incompassitated. It wasn’t until July 2007 that some of the fatigue subsided and by then some of the pan in my legs was starting to feel a bit better. As the months went by I began to regain my stanima slowly and things generally began to resolve themselves.

By December 2007 I would say I was probably 80% back to normal - whatever normal is. But I felt a lot better. In January 2008 I returned to my cardiologist and informed him of my delima. He blew it off and said I probably shouldn’t take statins any more and did the normal round of testing. The testing showed that my mitral valve in my heart had significant leaking or regurtation. From age 18 the doctors had told me I had mitral valve prolapse but said that it was common and probably never require any surgery.

But now I required open heart surgery to repair my heart valve. I had the surgery in January 2008. It has been a very slow recovery. I still have pain in my lower back and legs and now I have heart rhythm issues from the surgery. I am now - in July 2008 - just getting back to feeling the way I did in December 2007.
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Postby SallyM55 » Tue Sep 02, 2008 6:23 pm

My story is not as severe as a lot of yours, but what scares me is the thought that it could be one day.

I am a 57 year old female who took Lipitor for only 90 days back in spring 2006. Right away I was having muscle pain at intermittent times, but I thought perhaps I had 'over done it' at the gym or something. I thought of them as "way painful Charlie Horses". Then one day at about the 90 day mark I was at work (desk job) when I got a severe cramp in my torso area, and I leaned back in my chair to stretch it out, as I reached for the edge of the desk to pull myself back upright, every muscle in my arms, neck, back, legs ... everywhere, felt as if they were cramping and would not stop. My co-workers called an ambulance because I could not stop it from hurting. So I ended up in the hospital for 2 days as they flushed my system of the Lipitor.

After the flush job I felt better. For awhile. Then I would get cramps in the middle of the night in my legs and feet. The cramps would happen more and more often and increasingly severe, until it was every night.

I must be 'slow' because I didn't put 2 and 2 together for many months and then I found this board and started reading. I've just started taking L-Carnitine and it helped right away. I am thrilled about this, but am also wary as to 'what's next' and will my muscles continue to deterioriate?

Anyway, my heart goes out to all of you who've had way more problems that I have.

Thanks for listening. It sure feels better to know I'm not crazy, nor am I alone.

Sally Miller
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Postby dottieatk » Sat Sep 13, 2008 12:56 pm

I am 68 and have taken Statin drugs off and on for 15 years. I stopped a couple of times and the doctors always insisted I start again. I have taken Questran, Mevacor, Pravachol, Lipitor, Zocor (with and without Zetia), Crestor, Vytorin, Crestor again and a generic. I watch my diet and exercise daily. My first cholesterol reading was 425. Have been unable to lower it beyond the 250-290 range. It goes up and down. The doctors have not found this acceptable.

Many health issues have developed since taking statins, but I didn't connect them. Recently I found I had trouble rising from a straight chair and nearly all my joints were painful. Called the doctor and she switched me from Crestor to a generic.

Since taking statins I have developed GERD, IBS, skin problems, muscle weakness and pain, insomnia, headaches, vision problems, depression, cold feet and hands, ringing in the ears and many others.

My skin issues include rosacea, eczema and general itching. I went from such oily skin I had to cleanse it 3 X daily to needing moisturizer 4-5 times a day for dry skin.

I've had respiratory allergies for years, they got worse after the statins.

Whenever I have reported problems to a doctor, the reply always had something to do with stress and aging.

In Dec 2007, I retired. I was a telecom analyst for a women's clothing call center. I was on-call 24X7 and the job was very stressful. I thought my health would improve with less stress.

In July 2008, I made a list of all my physical symptoms and decided to check it out. I did a search on skin issues and statins and found a gold mine of information. When I found Spacedoc I was amazed at how many of my symptoms were listed. I decided to stop taking statins and informed my doctor.

I began taking CoQ10. After about a month the pain in my wrists has lessened considerably. I got Dr Gravelines book on statins. I am following his recommendations on vitamins. I understand that some things won't reverse so I am probably stuck with the skin issues, gerd and IBS. I am hoping for continued improvement with my muscle strength and joint pain, allergies (can't take allergy drugs) and that the insomnia will disappear.

I will not take statins again. dottieatk.
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my statin nightmare

Postby pamelasp » Thu Mar 05, 2009 4:50 am

I took Simvastatin for 28 months as a precaution against getting high cholesterol - that's what my Dr told me - I was 50yrs old at the time.Within 12 months I had the muscle damage - it was so bad in my right calf I couldn't bear the covers on my bed to touch my legs/toes. Insomnia, morning diarrehia,Sciatica, severe memory loss - so bad my neurologist thought I had the onset of dementia, chest pains, jaundice, hand tremors, neuropathy in hands/feet/face - was told this was Carpal Tunnel Syndrome?, Arrythmia, grey pallor,tripping, statin shuffle, difficulty swallowing & finding the right word,aged 20 yrs, TGA in Vienna & Texas when on holiday, choroid plexus cysts + much more. Stopped Statins 11 months ago - muscles improved but am left with neuropathy and memory loss and a very low WBC.
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statin drugs

Postby gotts1936 » Mon Mar 16, 2009 2:29 pm

This my story update from April, 2008. I hope updates are acceptable, if not they should be. I am still in pain when I sit down or get up from a chair. It hurts to get in or out of my vehicle. It has been over two years since I stopped taking Lovastatin and my leg muscles are still worthless. I guess once our muscles are damaged we never recover from the statin drug posion fed to us by doctors who , along time ago, use to bleed us to rid our bodies of disease. So much for the progress of medical science.
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My Story Memory Loss

Postby jbrunzie » Sat Mar 28, 2009 9:00 pm

My Experience with Statin Drug Therapy for High Cholesterol

In my recent search for explanations and solutions regarding my experiences while on statin therapy for high cholesterol I have had to write a description in one form or another. I decided that I would put it all down in one place so I wouldn’t have to keep doing it, piecing it together from various documents, etc.

In my medical history is the fact that apparently everyone in my mother’s family (which I strongly resemble physically) ran very high total cholesterols. There is no history of heart disease or major stroke that I know of. Most of them have lived into their late 80’s or 90’s with good mental clarity (no dementia or Alzheimer’s disease). Some of them (my mother included) had some TIA’s (mini-strokes) in their later years which caused some diminished health, but they pretty much retained mental abilities commensurate with their advanced ages.

As closely as I can remember I was put on Lipitor about eight years ago (~1996) because my cholesterol numbers were unacceptable to my internist. I had a good HDL number but the others, including total cholesterol, were increasing as the medically acceptable limit was decreasing. I started out with 10-mg doses. At first my TCN (total cholesterol number) went down to an acceptable level. Then it started to climb even with the Lipitor therapy. So my dose was increased to 20 mg and eventually to 30 mg. During one period a few years ago I experienced some muscle pain and was put on Baycol until it was removed from the market because people were dying; I was put back on Lipitor. Sometime in the last several years (I can’t pinpoint this because it was extremely gradual at first) I began to notice that I was having more and more “senior moments.â€Â
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Postby schatzi » Tue Mar 31, 2009 7:48 pm

Was prescribed Mevacor about 1992 through 93/94:
• Age: 51-53
• Dr. prescribed Mevacor for slightly elevated Cholesterol
• Became very depressed, went for cognitive therapy, ended up in therapy for about 10 years
• Became easily upset and angry
• Experienced severe swelling around left knee and legs, ER visit, hospitalized with suspicion for blood clot, diagnosed after venous Doppler, placed on heparin and then Coumadin
• Had various incidents of rapid heartbeat, was hospitalized in ICU several times
• Dr. prescribed Lanoxin for heart, Dipyridamole for leg pain,
• Started gaining weight, about 45 lbs
• Had difficulty walking, legs felt like lead, always painful.
• Sleep disturbances, very loud snoring
• PC Dr. prescribed Desyril and sleep meds, later prescribed Zoloft for depression

Zocor, about 1994 through 95/96/97:
• Age: 53-56
• Since Mevacor did not lower Cholesterol, in fact it was slightly higher, Dr. prescribed Zocor
• All previous Symptoms remained, in fact got worse
• Needed special accommodation at work which were reluctantly agreed to and only after several letters from Dr.s
• Hospitalized for pain management with severe unexplained hip pain
• Leg swelling
• Discolored urine, very strong ammonia odor
• Started sweating profusely, like water being poured over the head
• More severe incidents of rapid heartbeat
• Diagnosed with heart arrhythmia
• While in ICU, experienced anaphylactic shock from Morphine, was never allergic to it before
• Became allergic to several pain meds
• Breathing difficulties
• Difficulty swallowing food and even water, often choking
• Even more unable to deal with stress, at work and at home
• Became more confrontational, continued cognitive therapy
• Retired from my high stress/pressure job the end of 1998 at age 57

Pravachol, about 1998/99
• Age 57-58
• All of the same symptoms remained
• Experienced Acid Reflux, even though sleeping in almost sitting position
• Vomited almost every night
• Stopped Pravachol
• Gallbladder surgery
• Weaned myself off Zoloft with the help of my Therapist, took almost two years, in spite of my PC Dr. telling me I could/should not get off Zoloft
• Tried to control Cholesterol with dietary measures, exercise etc.
• Being retired I was generally better able to take care of myself
• Stopped taking pain meds for my legs, rested more, elevated legs, etc.
• Leg pain subsided somewhat

Lipitor 2004/05/ part of 06
• Age 63-65
• All the previous side effects appear again
• PC Dr. put me back on statin drug due to still elevated Cholesterol, Heart issues, age and family history
• Hypoglycemic incidents of glucose dropping rapidly
• Acid reflux became worse than ever
• Short term memory loss
• Insomnia, awake for hours every night
• Often woke up with very rapid heartbeat and pulse
• Always sweating at night, soaked
• Frequent nocturnal urination
• Vomiting and diarrhea, often so bad had to go to ER in middle of night
• Frequent hospitalizations for dehydration, vomiting, diarrhea and heart issues
• Pneumonia
• Diagnosed with Hiatal Hernia
• Racing heartbeat, high BP, had to go to ER in middle of night several times
• Diagnosed with Hypertension, 190/100 prescribed Ace Inhibitors, all of which I could not tolerate, severe coughing
• Cholesterol remained high
• PC Dr. refers to Cardiologist, prescribed Micardis 40mg for BP, stops Lanoxin, prescribes Toprol LX 25 mg, Norvasc 5 mg
• BP goes down some, still 140/85, 150/90, 165/95, variable
• Cardiologist also refers to Lipid Clinic.

Crestor, 2006/07- Nov 08, Feb/Mar 09:
• Age 65-67
• Had been off Lipitor for a while so the side effects had kind of subsided but rapidly returned with much more severity
• Anger and Rage issues
• Short term memory loss
• Swelling of ankles, legs and hands
• Continued heart arrhythmias
• Aug 2006 Incident of very high BP in middle of night, ER, Cat Scan, hospitalized, transferred to Regional Hospital.
• Heart Catheterization, results fairly normal
• BP still high, Micardis increased to 80mg, Toprol LX 25 mg, Norvasc 5 mg
• BP somewhat improved
• Frequent urination at night, sometimes 4-6 times
• Extreme joint pain, knee’s, elbows, hands, wrist, feet, toes, hips
• Cholesterol down LDL 100, HDL 41, Trigl 113
• Hypoglycemic events become more frequent and intensified
• Tested and Diagnosed with Hypoglycemia Mar 2008, Glucose level 27
• Glucose drops frequently and fast although I am adhering to a prescribed food/eating schedule and test glucose 3-4 times daily
• Diagnosed with Sleep Apnea, which had been a long standing problem, since 1994. Prescribed C-PAP which has helped tremendously - While using C-PAP noticed that BP would be normal to moderately high while taking Statin. When not on Statin BP would be normal.
• June 2008 unexplained near syncope, treated in ER, Brain Scan no abnormalities noted, carotid artery scan, normal, no blockage
• Began experiencing symptoms of peripheral neuropathy in both hands and arms
• Nov. 2008 Neurological testing disclosed CTS in right wrist, (which was present for years without any type of numbness at all).
• Neurologist dismissed my questions about Crestor
• Due to the extreme pain Cardiologist stopped Crestor on 05 Nov 2008
• 25/26 Dec 2008 hospitalized with Gastroenteritis
• Released 27 Dec 2008, although the nurse was informed my heart was beating more rapidly
• One hour later back in ER, BP 214/113 Pulse 179, diagnosed with Atrial Fibrillation, ICU 2 days, treated with intravenous Digoxin, eight hours to normalize pulse and BP. PC Dr. prescribes Lanoxin.
• 05 Jan 2009,Cardiologist stops Lanoxin, prescribes Bystolic 5mg, lowers Norvasc to 2.5mg, continue Micardis 80 mg, orders Holter Monitor, pulse goes low to 30’s at night
• More incidents of Hypoglycemia, find out Bystolic masks the symptoms of hypoglycemia until they become very severe.
• Cardiologist lowers Bystolic to 2.5mg, somewhat of an improvement
• Symptoms of peripheral neuropathy somewhat receded
• 24 Feb 2009, Lipid Clinic, insisting on my taking Crestor, LDL was up to 141, Trigl still low. If I am not taking prescribed Cholesterol meds I cannot be treated at Lipid Clinic!!!!!!! Insurance or Pharma??????????? Your guess.
• Compromised on Crestor 2.5 mg daily and Promise Super Shots twice daily. (My husband is Diabetic, his LDL was 113, Dr. instructed him, get it down or take Statins. He chose to take Promise Super Shots and his LDL lowered from 113 to 79 in two (2) weeks).
• Immediately after starting Crestor again, even the low 2.5mg dose, the pain in joints, knee’s, legs, shoulders, hands, wrist, feet, ankles and toes became almost unbearable.
• Discomfort in Kidney area
• The peripheral neuropathy symptoms increased again
• Now have a muscle or nerve twitch in my upper right thigh, on the outside; the soles of my feet don’t feel quite right
• Insomnia in spite of C-PAP
• Nightly urination , darker and smelly, very strong ammonia odor
• Took myself off Crestor on 24 March 2009 and will never take another statin drug
• Called Lipid Clinic on 30 March, they recommended stay off Crestor until middle of April and report back. Thanks a lot!

In retrospect, I was always pretty healthy until the first statins were prescribed.

I am now 67 years young, of course all the ailments due to statins were first ascribed to middle age, menopause and getting old(er). And no Dr. will ever admit that statins cause these problems.

Although there is a history of heart disease in our family, most of my relatives have lived to be in their high 80’s and even 90’s. So I plan on taking care of myself, enjoying my Son’s and grandchildren, and never, never, take statins again.
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Postby moaningminnie » Mon Jul 13, 2009 7:29 am

In 2005 I had two major hip replacements with complications (one a revisionary of old 1960 osteotomy operations) but was discharged on 22 December 2005. It had been a slow recovery from such a trauma but I was doing well and walking without crutches. Just a few months following the operations I was put on 20mg Lipitor/statins in April 2006 before I had even started a rehabilitation programme in a gym to build up muscles and stamina again. My metabolism was poor and I had become slightly overweight because of the long hospitalisation and inactivity. My GP did a blood test and said my cholesterol was too high 6.8, or thereabouts, and said I needed to be on statins for life and if I didn't take the drug I would have a heart attack. I was very shocked to learn I had a new ‘disease’ that needed ‘treatment’ - for life… I was given no warning about any health risks from taking statins and nothing was said about diet and starting a rehabilitation exercise programme.

Six months later I saw another GP (in the same practice) and I said I felt exhausted all the time with constant muscle pains and had a very dry mouth needing to drink water very frequently. By then I had developed twitching and jerking in the thoracic upper back muscles and neck. I said I thought it was the statins, or I might be diabetic, with these symptoms and wanted to come off the drug for a three months trial. After three months she said I wasn’t diabetic but the cholesterol level had gone up again and coerced me back onto the drug. But again, I was never warned of any serious risks associated with statins, or asked anything about my family medical history regarding muscle disorders.

The symptoms worsened. I became extremely intolerant to bright light and the eye watering/tearing was so bad I could hardly see to drive and I felt 'nervy' and dizzy. Getting meals and doing the smallest tasks was like climbing Everest. I had diarrhoea and was constantly passing water. After two or three hours sleep I needed to get up through the night to drink again and pass water. By morning I was too exhausted to function normally with debilitating muscle aches and pains. Socialising became impossible. By 2007 I was so concerned about the profound muscle weakness, and twitching and jerking in the upper back and neck muscles disrupting my sleep, together with the severe eye problems, I asked for a brain scan. The upper back, neck and breathing muscles became so rigid after over exertion I sometimes had (and still have) feelings of near panic before going to sleep. To force the muscles and brain to relax I have to cover my eyes and put hot pads on the back of my neck, upper back and front. The brain scan results came back normal – ‘nothing to worry about’ I was told - apart from the relatively mild/moderate pre-existing congenital brain damage.

By early 2008 I began experiencing severe arrhythmia - the first time ever - with difficulty breathing during weekly hydrotherapy sessions and had to stop going. I also had to stop going to a rehabilitation gym twice a week. No GP had offered information about these exercise programmes - I had to ask. Unable to do these activities anymore I was becoming more and more isolated and depressed. I also felt too exhausted to drive far, so one evening in March 2008, I was a passenger in a car with some friends and felt so ill/weak I could hardly talk with a horrendous stabbing pain in my upper back. My voice pitch had also changed. I couldn't cope with noise, music playing and people talking, and I had difficulty writing. The fine motor skills had been affected and the following morning I made the very first urgent/emergency phone call to speak to a doctor on telephone duty. My then registered GP phoned back and told me to come in the same day. Before I went I checked on the internet for the first time about any dangers associated with statins and I could hardly believe what I was reading and hearing - 'Statins and ALS-like syndrome' - I definitely had these symptoms.

Through The People’s Pharmacy website I heard Dr Ralph Edwards, Director of the Drug Monitoring Centre of the World Health Organisation talk about his research on hundreds of other ‘Statins and ALS-like syndrome’ reported cases. The GP dismissed it. He ordered a blood test and a week later I was told to come off the statins and referred me to a cardiologist (not local) for the very first time. I wasn’t told then my cholesterol level had gone down dangerously low to 4.0mmol/L. I saw the cardiologist in April and was told the heart rate would settle down to normal at night having stopped the statins. No follow-up appointment was offered. I wasn’t warned of the dangers of quitting the drug. I began making more emergency GP visits but still my concerns were ignored. By May, on a Saturday morning, I had a mini-stroke with excruciating pain in my upper back muscles, shoulders, left side of neck that caused sudden weakness in my left arm and throat making it difficult to swallow. I was terrified but I didn't call A&E because I knew no one would listen and believe me. I reported this to the senior partner I met in the street and he said: “Call A&E next timeâ€Â
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statin induced polymyalgia rheumatica

Postby pattyann » Thu Jun 10, 2010 8:20 pm

I took Crestor for 5-6 years. I started hurting in my hands, shoulders, thighs, etc. Went to a rheumy and he said, "you have arthritis Pat and that is how it is." Went back a year later because I was hurting worse and he said, "Pat, you are getting old. Get used to it."

Finally I got into a deep flare last summer ... blood pressure going out of sight, loss of appetite, running a low grade temp, and every muscle in my body hurt soooo bad. I thought I had myositis. I went back to him in Nov 09 and said I can't take this any more. He did a sed rate and crp and they were high. He said Pat, you have statin induced polymyalgia rheumatica (pmr).

On Nov 20 2009 he put me on 15mg predazone. Within hours I was feeling so much better. What a relief to be free of the pain (that took a while). I am now down to 4mg.
I have read countless stories on here of people being in pain. I have not read where anyone was taking pred. (Maybe I missed it, forgive me.) I have read of statin induced als but not pmr. Not all, some of the people on here are having pain, and it sounds like they might have pmr and could be helped by pred.

I got 2 of Dr. Graveline's books yesterday and they make sense. I have high cholesterol and the doctor's don't know what to do because I will not take a statin. My present doctor put me on 4 Lovaza a day and in 3 months it had knocked my triglycerides down by 20 points. My triglycerides were not that bad, it is my ldl. My hdl is excellent.... 84 I think. Now he wants me to take Zetia but I read up on it and ... no thank you.

I have been reading and reading trying to figure out what to do and then Dr Graveline's book came along. I found out about it thru this site.
I am going to do a research project and try out spacedoc's supplements. I'm excited! I am indebted to this group. Thank You. If anyone has any questions, just ask, I will attempt to answer to the best of my ability.
Posts: 11
Joined: Thu Jun 10, 2010 7:54 am
Location: Tampa, FL

Postby Jollygirl » Wed Jul 20, 2011 8:10 am

Hello to anyone reading this...

I am 38 years old and been on 10 mg Lipitor now for 4 years.

My story starts shortly after the birth of my third child. I was suffering from extreme pain in my right breast and lower chest under the breast bone. My doctor did a physical, sent me to an osteopath thinking it was muscle pain from carrying the baby. I also went for routine bloodwork. Everything came back normal, except for that I had [u][b]extremely high cholesterol![/b][/u]
I went 3 months on a very strict low fat diet and my cholesterol did come down, but was still too high. This, along with a strong family history of heart disease, my doctor said I was at high risk and put me on Lipitor.

I didn't seem to have any side effects and my numbers were all in the normal range.
Within 2 years, I've started to encounter a lot of health issues which I'm still not sure if the statin is the culprit, but my doctor always assures me it is not. The symptoms I have experienced have been intermittent and some other days I feel good.

It started with really bad insomnia.
Then the stomach issues, nausea, excess gas, bloating, constipation.
Irregular heart beats, especially at night with the insomnia.
A pain that shoots down my right leg and a funny numb feeling behind my knees.
Then very irregular and often missed menstrual cycles.
My doctor has said a lot of these symptoms are hormonal and stress related. My bloodwork only showed signs of abnormal levels of FSH ovarian hormone. She attributed everything to perimenopause which I accepted.
Then I was feeliing pain on my right hip.
Then I was diagnosed with a huge ovarian cyst which my doctor explained was probably the pain from my right hip.
Then more stomach issues.
Pain that seems to come from lower abdomen, like from my bladder.
Doctor said no infection and sent me for another ultrasound with came back completely normal.
Most recently, I woke up with extrememly sore muscles in upper abdomen as if I did a thousand sit-ups the day before.

The only supplements I take are vitamin D and omega 3 fish oil.
I've tried taking multivitamins, but they always make me so nauseous. When I asked my doctor about taking CoQ10 supplements because I was on Lipitor, she said it was not necessary.

I have never been comfortable with taking lipitor and do not like what I am now reading about it. I am scared to stay on it and also scared to go off it.
Posts: 7
Joined: Tue Jul 19, 2011 12:16 pm
Location: Montreal, Canada

My statin story

Postby Valerie44 » Wed Jul 27, 2011 12:12 pm

I am sending you my own story on statin poisoning and my GP family doctor is 100% certain that Simvastatin is the cause.
October 2008

My GP told me I had high cholesterol and prescribed me 20mg Simvastatin. At first I experienced no side effects. However, after about 3 weeks I experienced some palpitations and dizziness. My GP said this was nothing to worry about and I just lived with it.

April 2009

27th - I had a massive attack of palpitations which after 6 hours were not showing signs of stopping. In the early hours of the morning, my husband took me to A&E and I was admitted.

28th – Various tests were carried out at the hospital:
• ECG – inconclusive
• Blood test (12 hours later) – suggested heart attack due to raised chemical levels.
• Angiogram – inconclusive
• Consultant suggested pericarditis (with a massive question mark next to it) and NOT a heart attack.
• Hospital increased dosage of Simvastatin to 40mg.

May 2009

3rd – Developed allergic reaction (hives). Doctors suggested this may be due to Angiogram (although maybe this was later rejected by my GP who said it was more likely due to the increased dose of Simvastatin).

Late May 2009

During my recovery from the “Pericarditis” I started to develop some emotional changes. I have never in my life been an anxious person and have always dealt with emotional upheaval well. However, I now started to dredge up past experiences and began to become extremely affected by them. I sat with my daughter for hours upon end and sobbed and sobbed and sobbed. One afternoon I laid on the floor of my living room in a foetal position and howled for absolutely no reason at all. My family decided that this was so out of character and knew I had to see my GP. Upon vistiting my GP (crying throughout the appointment), he diagnosed me almost immediately with General Anxiety Disorder (GAD) and prescribed a low dose of Cipralex.

Wimbledon Week 2009

During this time I have very little memory. I only remember Wimbledon Week. I have always watched the matches and enjoyed them. This time, however, I was unable to follow the game. I couldn’t fathom how the scoring worked. I couldn’t watch it without breaks as it confused me immensely. I was still having severe emotional episodes. My family consoled me and reassured me that the Cipralex would kick in soon and it would all be ok. My vision was distorted. I couldn’t see myself in the mirror. I now stopped seeing anybody outside my family and stopped going out.

July 2009

I visited my GP twice in this month. I did feel some effects of the Cipralex. However, there was no real improvement. I kept asking my family if they could see any changes, they reassured me, but since then told me they were horrified at what was happening to me, but did not want to scare me. They researched brain tumours and dementia. All of which did not quite fit.

I had an appointment with the outpatients at the hospital to check up on the “pericarditis”. A further ECG revealed that my heart was 100% healthy. Despite being extremely difficult (through lots of tears), I managed to tell my consultant that I was suffering from GAD. He was reluctant to accept that this could have been the root of the palpitations.

November 2009

27th – my daughter attended a first aid course at her school. Her instructor was having a conversation with one of her colleagues about statins. She overheard him saying how dangerous they are. When she came home, she told me what she had heard, but did not know I was on them. We typed in three key words “Simvastatin and anxiety”. The results on the search engine were phenomenal. Every single symptom was there as a side effect of Simvastatin. I stopped taking the drug immediately. The change I experienced was incredible. The vice-like grip on my head disappeared, my vision was restored, I stopped crying, I felt a little bit like me again.

Early December 2009

I felt like my mind was desperately trying to recover, but it felt like something was preventing this from happening. I realised that this was the Cipralex preventing a full recovery. I stopped taking the Cipralex gradually over 1 week.

4th December – On a visit to the GP he confirmed that he was 100% sure that Simvastatin had been the root of all my problems. He took my notes and has now forwarded them to the pharmaceutical company on the famous “yellow form”.

[u]Present day[/u]
Fully recovered and no longer experience any symptoms. This wicked drug should be removed from the Market entirely.
Posts: 1
Joined: Sat Jul 23, 2011 6:21 am

My story

Postby SandyW » Sun Jul 31, 2011 7:03 pm

My experience with statins started over 10 years ago when there was little to no information available and I thought at first it might be all in my head. I am a 63 year old female who had a kidney transplant in 1991. My kidneys failed because of a genetic disorder, polycystic kidney disease. My mother donated a kidney because of a vampire movie (another story); the kidney is 83 years old and still going! One of the three immunosuppressant drugs I was on, cyclosporine, causes elevated cholesterol levels and I was started on Lipitor 10mg. The drug literature cautions the use of Lipitor with cyclosporine.

Shortly after starting the statin I started having problems going up stairs and holding my arms up to wash my hair and blow dry it. After several complaints I had cardiac workup that was normal and was told to continue the statins. I slowly began to fatigue easier and had marked muscle weakness. I stopped the statins for over a month myself without any change so I resumed them thinking that was not the problem. I was going under the false assumption that stopping them would stop the symptoms in a short time. The literature said nothing about the problems being permanent!

It got to the point that I could not walk from my car to my office without sitting at an empty desk and resting. By the end of the day I was too exhausted to put gas in the car. I had to shower in the evening because it wore me out and I had to rest for at least an hour. I was having cognitive problems; I'd be driving and not know where I was on a regular route. I couldn't figure out how to put gas in the car.

To further complicate things in 2001 I went into acute renal failure. A biopsy of the transplanted kidney showed I had uric acid crystals (gout) throughout causing interstitial nephritis. It is very rare to get gout in a solid organ but possible. My GFR was 19 (you go back on the transplant list at 20) and I had to start epogen injections to increase red blood cell production for anemia. My weakness increased markedly. My cyclosporine level spiked to 100x the desired level. My nephrologist thinks this is when the permanent damage from the Lipitor occurred however I think it started much earlier. Mom's kidney is tough and has recovered to a GFR of 30 over several years.

But the muscle damage did not improved. Mine presented like myasthenia gravis with muscle tenderness from any pressure; getting my BP taken is extremely painful. If rested, I'd start out fine but my muscles would get progressively weaker until I would shuffle and then be forced to stop. Before I figured it out I almost got trapped in stores; I'd get in and couldn't get out. I had to sit on displays to rest so I wouldn't fall down—very embarrassing! My MD still didn't think it was the statin and did another cardo work-up that was normal except the respiratory tests showed weak breathing muscles.

I also had problems with my vision. I always liked to read or do needlework while watching TV. It became impossible because from looking up and down from my lap to the TV my vision would blur and I could see neither. The eye doctor said the muscle controlling my lens was fatiguing with the increased movement required to do something close and far at the same time. I also could no longer do the cranial nerve test where you look straight ahead and raise the eye lid. This confirmed to me something was wrong with my muscles and it wasn't all in my head.

I went to the neuro-muscular clinic at the University of Kansas in 2003 and was dx with statin myopathy on the first visit. They had one other patient with that dx who also had a transplant and was on Lipitor and cyclosporine. Unfortunately my symptoms have not changed after being off statins for 8 years. In fact they are getting worse despite the doctors claim they should not change after stopping the statin. At the time of my dx my nephrologist had several other cyco/statin patients who were complaining of muscle weakness and he immediately stopped their statin and their symptoms subsided within a month.
That's my story; I'm really glad to find this site!
Posts: 3
Joined: Wed Jul 20, 2011 1:58 am

Another casualty of statins

Postby wyldorchid5150 » Thu Oct 06, 2011 9:11 pm

Hi y'all...this is my horror story, and unfortunatly, its still going on. At 38 years old on Jan. 5th 2007, I had a heart attack. I never saw it coming, just woke up one night with my armfeeling like it was being wrong off.

My husband took me to the hospital and my whole life changed in one night. I was rushed into the cath lab and was told I had two 100% blockages in my RCA and my LA arteries, and was stented. I was also told I was a type 2 diabetic, and in the five days I spent there, I was introduced to the meds that would become my worst nightmare.

I had never had high blood pressure, they put me on two meds for that, Plavix, metfomin, and Vytorin, and Tricor. They also told me I had hypertriglcidemia, and said it was genetic. I had TRIs in the 3000, but my cholesterol was only 150.

Before all this came about, I was a landscaper and a private gardener, very active and strong, and had also worke for a major retailer in their garden dept. for several years.

It was only a month before I began to develope muscle pain, weakness, stiffness, and overall yuckyness, I also still had major briusing and pain at the cath site . At my first cardiac follow-up, I told the doctor my concerns and it was brushed aside.

I stayed on Vytornin for the next year, my pleas of help ignored and poo-pooed by more doctors than I can count.I went from an active person to moving from bed to chair and back. They finally started to change me from Vytornin to Pravastain, at its lowest does and nothing changed.

The most horrible muscle pain in the world, like waking up with the worst flu of your life ever day. Then the brain fog came, I couldn't remember days, spelling, if i had taken my meds or not. I went from doctor to doctor, no one had answers, just statements like,"Its not your statin drugs.", "Its all in your head.", "You need therapy.". I have been called crazy, asinine, a drug seeker, hypochondriac, & lazy.Then we lost our health insurance, which brought on a whole new horror to deal with. I have been given a plethora of SSRIs and the like trying to 'treat' my pain that is all in my head, even tho I walk with a cane and cannot get out of a chair under my own power. Last month, I nearly attempted suicide, I couldn't take one more day of this hell.My CPKs are always normal. I have begged,pleaded,screamed...noone will listen. 5 weeks ago I told my doctor, either I was coming off of these drugs or I was going to put a bullet in my head. I should also add that over these years, no doctor has EVER activley treated my pain, just fits and spurts here and there. I've taken 6 hot baths in a night, consumed to much asprin, to much tylenol looking for relife.

Tomarrow, I go in for my first lipid panel since being pulled off Pravastatin and Tricor, and I know what they'll say, I have to go back on. I can't. I guess this will just kill me because I can't do it anymore. I've lost hope, I wish I could have found this site years ago.

Sorry this is so scattered, my brain doesn't work in long spurts, just the short runs. But everytime they take me off the statins, my chemistries got to the dogs, and they have tried a million differnt drugs. Thank you for listening, and I plan on reading every thread here, maybe I can find an answer.

See? There's the brain fog again, I also had another heart attack in 2009 and had another stent placed. 3 total.
Posts: 2
Joined: Thu Oct 06, 2011 12:31 pm

Statin Damage after 20 years

Postby dannyboyyo » Sat Oct 15, 2011 2:07 pm

I am writing my husband’s story . Several months ago he gradually lost the ability to walk far. He can exercise on the treadmill for about 5 minutes before being forced to stop. .It’s like a low battery that needs re-charging all the time. He used to play golf and was very active. Now he cannot walk without a cane or a shopping cart, like many of the people I read about here. He doesn’t have any pain now, but his legs and arms are very weak. He has lost weight and muscle mass He complained of leg cramps, pain and dizziness for the last few years, but doctors brushed it off as if it was nothing.

His heart doctor stopped my husband from taking his 40 mg dose of Crestor after blood tests showed elevated CK. The doctor can’t believe that Statin’s can cause this much damage, especially after all this time. My husband had a heart attack 20 years ago and received angioplasty to clear a blockage. They put him on different statins over a period of time. He was on Lipitor for five years, sometimes at 80 mg dose. The last five years he has been on 40mg Crestor until told to stop 4 months ago, in June.

He is suffering from what the neurologist thinks is peripheral neuropathy, but he is puzzled. There doesn’t seem to be any cause. MRI, ultra sounds, CT scans look normal. We have not received his latest opinion after an EMG and several more blood tests. We have already told our family doctor that no matter what this diagnosis is, we want a second opinion from someone at a large university medical center near us. She agrees with us on this but she doesn’t believe that Statins can cause all this damage. Even if they could, then he should have recovered two weeks after stopping Crestor.

Since stopping Crestor, several things improved: no more insomnia, nightmares, leg cramps, hip and leg pain , no more GERD. However, the muscle weakness improves and then gets bad again. His bouts of dizziness have increased. It has been six months of tests and referrals to other specialists. To-day I am going to fill out the form for a disability parking permit. I can’t believe this is happening. He has started losing weight again.

His drug cocktail was Crestor 40 mg, Ezetrol 10 mg., Losec 20 mg, Bisoprolol (beta blocker) 5 mg, Monocor 5 mg, Xatral 10 mg , low dose aspirin.

He has now stopped Crestor, Ezetrol and Losec.

He is now taking 100 mg Kaneka CoQ10, 1200 mg Vit B12 (blood test showed he was low), 2000 U Vit D, Vit C, Multi vitamin. All these with his doctor’s approval. I haven’t asked about L-Carnitine yet. I’m sure it will NOT be approved since the pharmacist I spoke to was almost hostile at the suggestion. I am afraid for him to take anything without a Doctor's approval.

When I have time, I will contact Health Canada, the FDA and anyone else I can think of because I think it is the damn statins that caused all this misery and the doctors won’t consider it and they will NOT REPORT IT. I filed a report at the Beatrice Golomb (spelling ?) website. I am trying to contact someone at McMaster University Hospital who says he is interested in Statin damage. So one doctor who is listening. Maybe he can give me the name of a specialist who will be open minded.

Thank God I found this web site. There is some hope. A friend of ours told us he had similar problems. He gradually recovered his ability to walk after stopping Lipitor , but it took him two years to get back to normal.
Posts: 2
Joined: Sat Jul 16, 2011 11:39 am
Location: Canada

Postby leeno » Sun Oct 16, 2011 12:17 pm

After reading these forum posts for 3 years, I have decided to post something of my own. It's my way of giving back for all the information, general support, and validation shared here. Thank you all for that.

My story is shorter than many of yours, as it only started about 3.5 years ago. And, I am doing better than many of you: I'd say I'm back to about 85% of where I think I should be overall. But I too went through the doctors and the pain and the frustration and helplessness.

It was my sister who first noticed that my legs looked thinner. I got on the scales and was down 13 pounds !! I realized then I'd been having difficulty with my balance, and walking on snow and ice. I think my brain fog had already begun at this point, which was December of 2008, because I don't remember that I was very alarmed at these changes. But my weight loss continued, and the leg atrophy accelerated.

In April 2009, I had kidney pain and dark urine. I was feeling really poorly at this point. I believed I was having an episode of my auto immune kidney disease (IgA nephropathy). My regular family doc was on leave, so I was assigned a substitute, a semi-retired nephrologist. Even having never seen me, he was alarmed at the sagging skin on my legs, my unsteady gait, and the weakness in my legs, which was mostly in my quads. And by now I had lost 30 pounds. When I told him I'd been on statins for several years, he said, "STOP NOW, you're borderline rhabdo." I did just that.

So I went home and started doing my own research. I found this forum and gained confidence that statins were my problem.

Two months later, I finally had my first appointment with a neurologist. Didn't like him. He seemed not to believe me. Scheduled me for the usual nerve tests... in 6 weeks. By then I had been off Vytorin for more than 3 months. I felt pretty clearly that I had stopped getting worse, but I could not discern any improvements. Fasciculations were becoming constant in both legs. Muscle pain was ever-present, but not severe. But my legs were very weak. I could not walk in a stiff breeze. I could not walk down the grocery aisle without weaving from side to side. When it came time to wear warmer footwear for fall, I found that my boots were too heavy - I couldn't lift my feet off the ground! And it seemed my leg muscles were very slow to move. My proprioception was impaired. When standing on packed snow or ice, even with two walking sticks, my brain and my feet could not agree on how I should move. I'd stand there arguing with myself and be unable to move at all.

Fortunately, I am retired, as I couldn't add numbers, find words, plan or organize my affairs, or remember much of anything. I was a Zombie. In retrospect, I also was not really able to grasp the seriousness of my deficiencies. I am now, looking back on that time. How did I ever get by?
A patch of my hair grew out all kinky and wild and coarse. My skin was crepe paper, I was tired all the time. Everything was difficult. I can not imagine trying to hold down a job or be a parent, and for those of you who have too, I have great empathy.

Unsure whether I was improving at all, I decided to try another neurologist (Jan 2010). I did like her. She did all the usual nerve conduction tests right then at the first appointment, and did take me seriously. She said a muscle biopsy was the next step, but that she expected the results to come back as "abnormal, but not diagnostic." She believed in statin damage, and we agreed to make that our preliminary diagnosis. She gave me an open appointment to come back whenever I needed to. She was very supportive of me, of my being in charge of my case, and of the supplements I was taking (got the list at this forum).

It's almost 2 years since that doctor's appointment, and I have not consulted a doctor since. Last summer, I began to believe that in fact I was improving very slowly. Seemed as though only a quarterly self-assessment could reveal any positive changes, because they were so slow.

Just recently, my brain has really been waking up. Here's a little story within my story. This fall, I started noticing all the kinds of mushrooms coming up everywhere. I got interested in them and started going out looking for them. Then I brought some home to study. Only then did I begin to remember that I'd become interested in mushrooms about 10 years ago, had taken a course, and had 5 reference books on them! What a startling and weird feeling to recover those memories (I'm still waiting to remember that I was a chess champion, or a ballet dancer!).

My story is pretty average. But there are three points in my story when I listened very hard to hear the voice of my intuition, and my intuition turned out to be right. These I want to share with you.

1. I tried hard to perceive the nature of my muscle weakness. I felt strongly that what I was experiencing was my muscle cells running out of energy, rather than an abnormality in nerve transmission. Later, when the fasciculations were at their worst, I amended my self-assessment to include at least some neuromuscular disruption, but of secondary importance. This insight helped me to make better choices about what might be helpful. I told this to the first neurologist I saw. He brusquely replied that there was no way I could tell the difference between a nerve problem and a muscle problem. I called him later and said I would not be returning to see him again. He objected. I hung up.

2. My second intuitive event happened when I tried rehab. Though the folks there were very interested in my case, they could not adapt their protocols to me. I left the first session with instructions to do certain exercises so many times. But my intuition told me that this was not the way for me to go. I somehow just knew that working my weak muscles beyond their ability was not going to make them stronger. Only when the muscle cell energy came back would the strength come back. I only tried rehab because my friends and family were pressuring me to try it, as if they were saying I wasn't trying hard enough to get better.

3. The third intuition has really been the one to keep me going for the long haul. It was that the doctors could not fix me, whether I had a diagnosis or not. It felt really lousy to be told I had "a slight muscle weakness," or that "statins don't do that." The doctors' desire to put a label on my illness was not going to help me one bit. And, if they had labeled it, there still would probably be no cure, and few treatment options (ALS, myositis, etc.). So rather early on, I stopped letting myself feel anger and frustration with the docs, I stopped thinking that I needed them to validate my symptoms and their severity, and I just wrote them off. I put myself fully in charge of my own case, did my own research, took care of myself as I thought best, and tried to let the rest go. So, I recommend that, unless there is something specific that can help your particular symptoms, don't look to the doctors for help or validation. Use this site instead. I didn't know I was going to get better, and I don't know whether I will get any better than I am now. But I don't need the doctors to evaluate how I feel. Don't you feel the chill in the air when you describe your symptoms of brain fog to a doctor?

It's real, it's serious, and you don't have to convince anyone else in order to accept it for yourself. I had a great neighbor who checked me every day, gave me feedback on what she observed (your legs look rubbery, you're not making sense today, etc.) and played a game of Scrabble with me most days. I couldn't get through a game without mental fatigue 2 years ago. Now I am beating her....and she is very good.

Best wishes to all of you good people. I am thinking of you, especially those of you who have chronic and progressive problems. I believe that Big Pharma owes each of us at least a million dollars for our pain, suffering, and huge losses, but until that ship comes in, I'm going for what I can do today, and to be grateful for it.
Posts: 7
Joined: Sat Oct 15, 2011 6:43 pm
Location: Maine

Postby buck » Fri Feb 08, 2013 3:51 pm

In the beginning of 2010 I began experiencing rather dramatic weight loss, muscle atrophy, loss of muscle strength and joint pain. I am a male and at the time I was five months shy of my 67th birthday.

Thus began a series of medical visits and tests, which for the most part were not definitive. These included neurologists, general practitioners, internists, etc.

Towards the end of the first quarter of 2010 during a regular visit to my cardiologist I mentioned my condition mostly for informational purposes. To my surprise almost without hesitation he requested a complete halt to the 80 mg of Simvastatin (Zocor) that I had been taking daily for all of 2009.

I had been on cholesterol medicine for a decade with increasing strengths as my total cholesterol continued to stay above 200 while the “desiredâ€
Posts: 1
Joined: Fri Feb 08, 2013 3:42 pm

Postby lars999 » Sat Feb 09, 2013 6:55 pm


Great to read of still another statin victim recovering!! Congratulations!!

I got dragged down drastically by only 10 mg of Lipitor, but over many years. I too suffered, and still am hindered by, statin-caused damage to my ligaments, in knees, ankles, shoulders and wrists, including rotator cuff damage. I lost a major degree of control of my right leg, which badly degraded my skiing and even my walking. Just this past spring, two years after totally quitting Lipitor and starting CoQ10 (as Ubiquinol) and other treatments, I began to regain nerve connectivity from my toes to hips on right leg. This has resulted in major improvements in my balance on my right leg, which, in turn, is finally allowing me to return to walking normally and to skiing downhill on low intermediate (blue) slopes (I have hopes to move up to high intermediate slopes later this season -- but, black diamond slopes will remain a fond memory).

A large measure of cause of my statin-caused decrease in physical abilities is result that Lipitor lowered my natural total cholesterol levels from 270-280 to low 140s, well below the danger point of 160. Google "effects of too low cholesterol". My cholesterol levels are now back to normal and my health is largely returned -- I am 73.

From my personal experience, from reading results of as many large clinical tests as I can get my hands on, from reading the scientific reports that the "cholesterol hypothesis' in based on, I regard the entire "cholesterol hypothesis" to be bogus, a deliberate scan really. IF one believes predictions of "cholesterol hypothesis", I should have had a deadly heart attack long ago, thanks to extensively clogged arteries, or at very least, be a medical basket case. Instead, I seem to have minimal levels of plaque in my major arteries, and really minimal levels of inflammation, the real cause of arterosclerosis. My opinion of and trust in modern medicine has been drastically lowered, not only from my personal experience, but from reports from folks like you, from experiences of friends, etc. I now "do my homework" before implementing ANY treatments recommended or prescribed by doctors. I interrogate doctors -- if they react badly to that, I find another doctor. I am glad to hear you found an aware, decisive cardiologist -- I used mine to get some tests that disproved everything he was asserting, then deleted him from my life.

Again, congrats of getting off statins!!
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