Lipitor and Fibromyalgia? Help me here!

[dookiedog]

I am a 39 year-old male who used to be in pretty good health. In late 2003, my doctor prescribed Lipitor 20mg. I took it for nine months. I had my blood tests faithfully every 3 months. Two weeks after my third blood test, I woke up one morning with excruciating body aches. Two days later I was in the doctor's office. He suspected the Lipitor and sent me for bloodwork. My CK level was three times the normal limit. He took me off of Lipitor, and my symptoms lasted for another two weeks. I started feeling better until about a month later. I woke up one morning with my right elbow swollen very badly for no known reason. I went to an immediate care facility, where I was referred to an orthopedic surgeon. That doctor told me I had one of the worst cases of tennis elbow he has ever seen. After two shots of cortisone, one medrol dosepak, and ice therapy and every brace type gadget on the market my elbow showed no signs of improvement. Two months after the elbow incident, I picked up a 10 pound CPU for my computer and a terrible pain shot through my right shoulder. At the immediate care facility I was told that I had torn my bicep tendon at the shoulder. Exactly one week to the day after that injury, I went bike riding with my wife. We rode five miles (we rode bikes for excercise and fun about once a week.) The next day I woke up and couldn't get out of bed. I was in tears from back pain. An MRI confirmed that I had 3 ruptured discs and the beginning stages of facet disease. I started thinking that Lipitor might have something to do with these problems, as I had always been in pretty good health. Over the course of the past year and a half, I have been plagued with all kinds of infections,mainly staph infections and had stays in the hospital from them. I have also been diagnosed with osteo-arthritis in my hands, back and neck, fibromyalgia, carpal tunnel syndrome in both wrists, tennis elbow in both arms, stress fractures in both feet, every single joint in my body hurts every day. Both hips "give out" on me all the time, I have severe muscle pain in my back and calves, a stiff neck, recurring headaches (where I NEVER used to have headaches) and deep bone pain. I constanly have tingling sensations and/or numbness all over my body, but most of the time it is in my hands, feet, and the left side of my face and head. I feel that I have also suffered some short-term memory loss. None of these problems were present before I took Lipitor. I wonder if there is anyone in the same situation with me. I cannot seem to find anything online or in print about a relationship between Lipitor and Fibromyalgia. I have had all kinds of tests from Nuclear medicine bone scans to multiple MRI's, nerve conduction studies and lots of bloodwork. The tests alway come up negative for any known disease or condition, so the Rheumatologist diagnosed me with Fibromyalgia. I can think of no other possible reason for why my health has suddenly declined since I haven't had any major lifestyle changes. If there is anyone who can relate, I would sure appreciate a reply.

[sos_group_owner]

Hi Dookiedog,

One of the members in my group has done extensive research re: statins and FM as she has also been (mis)diagnosed with FM and CFS. Below are links she put together for you.

Fran
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I thought it wise to post these links for those of us who are or maybe suffering the side effects of statins and may well have been (mis)diagnosed / diagnosed by the medical profession as suffering from fibromyalgia and/or chronic fatigue syndrome.

There is quite a bit of reading/research here...... take your time and read them slowly.


ww.askapatient.com/viewratings.asp?drug=20702&name=LIPITOR&sort=age


ww.rxlist.com/rxboard/lipitor.pl?noframes;read=3641


ww.medications.com/go/se/Lipitor


ww.newmediaexplorer.org/sepp/2004/03/18/lipitor_side_effects_and_natural_remedy.htm


ww.blackwell-synergy.com/doi/abs/10.1111/j.1742-7843.2006.pto_193.x
The aim of this study was to examine the clinical profile of statin-induced myalgia in patients with no apparent predisposing factors.


ww.healingwell.com/community/default.aspx?f=24&m=434312


Dangers of Statin Drugs: What You Haven’t Been Told About Popular Cholesterol-Lowering Medicines
ww.westonaprice.org/moderndiseases/statin.html


ww.mnwelldir.org/docs/terrain/chronic_inflammation.htm
Microorganisms cause inflammation within our blood vessels, and the inflammation attacks the inside of the arteries. Besides immune cells being sent to the site to fight the inflammation, lipoprotein(a) is sent to form a sticky patch over the damaged area; a patch that that can grab onto cholesterol (supposedly bad cholesterol) and a cholesterol bandage is created over the site. However, the inflammation is inside now. The patch grows and bulges. The inflammation grows and bulges. Eventually, “blood vessels explode like popcorn.”

[sos_group_owner]

Hi again Dookiedog,

I don't want to alarm you but since you are experiencing so many different symptoms, I consulted with someone that was diagnosed with MSA - multiple system atrophy. Doug took Lipitor for a couple of years and is experiencing devastating side effects.

When you get a chance, please read Doug's story:
http:tw.us.publicus.com/apps/pbcs.dll/article?AID=/20040129/NEWS/401290101

Doug provided the following advice...

This doesn't sound like MSA but the prob with MSA is the symptoms change alot from patient to patient...

I would have this person go to a movement disorder clinic and see what they say... MSA attacks different parts of the brain in most people but this is not the standard symptoms that are seen normally.

As you know UCSD (Univ of CA, San Diego - Dr Beatrice Golomb) stated "We believe there may be a relationship between statin use and ALS or Parkinson's-like symptoms (some animal models have indicated this), but we still do not have enough research on this subject in humans."

So we are still at the research phase, just hoping I am still around when they get a treatment!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dookiedog, Most doctors do not possess the knowledge required to diagnose statin damage. The person adversely affected (unfortunately) needs to be persistent.

Fran

[Cathy]

My PM Dr. said that the lipitor caused my Fibro. He also said I would have a had time telling what symptoms were from lipitor and which ones were fibro. Kind of a catch 22. Unfortunatly he passed away before we could really start working on my problems. He was the only one I felt truely understood what was happening to me. So I am back to square one, as his replacement doesn't fully agree with his ideas. I sit here with a fenynal patch on my arm so I can function like a half-way normal person. My new Dr. wants to treat me like a fibro patient and ignore the lipitor, which really upsets me, but I have no where else to turn. Sorry this has gotten so long....Why can't someone admit that lipitor is a problem and work on how to treat this?

[harley2ride]

Cathy,
Mine statin injury was from Crestor. It took an EMG, muscle Biopsy, and a CO2 test to prove my problems were due to statin injury. Dr. Phillips at Scripps Memorial, San Diego, CA was who I saw. He said that he wasn't surprised that my Neurologist couldn't determine it solely from the EMG, and that my other doctor couldn't make a positve from the biopsy. It took seeing the results from all three of those things for him to make a sure diagnosis. Other doctors may disagree, but I recommend that you check with your local doctors, and see if they can refer you to someone who specializes in statin type injuries. Then you won't end up like me, spending over $40,000.00 out of pocket (after insurance), to find out what is wrong.

[bunnylady]

I went to see my orthopedic surgeon on Thursday so he'd know I didn't die and fall off the face of the earth. He brought a physical therapist with him and I told them my story- they said it sounds like statin induced fibro and he wants me off prednisone and on Celebrex, which I don't think will touch the pain

anything else I should be doing?

[Dee]

Fibromyalgia and statin damage are not the same thing. There is no known cause for Fibromyalgia.

I have had Fibro for 20 years, long before I ever took a statin. While Fibro is no picnic, I was able to function fairly normally with it until I developed statin damage 5 years ago. Now I am pretty much totally disabled.

Don't let doctors blow you off with a Fibromyalgia diagnosis. A more accurate assessment would be statin adverse effects with Fibro "like" symptoms.

I remember reading an article about a Rheumatologist that told the Cardiologists in his area to stop sending him patients that had been on statins, as there was nothing he could do for them.

The trouble with statins is that they cause so much body-wide damage that a person suffering adverse effects could probably be diagnosed with "something" wrong with many body systems, by many different specialists!

[Linda Paulhus]

I was dx'd with Epstein Barr Virus and fibromyalgia in 1992 [after 5 1/2 years of misdiagnosis]. Until the late 90's, fibromyalgia was clearly defined as a stealth-virus related disorder causing neuromuscular pain. For further information see www.ccid.org. I reversed the virus in under six months using non-drug remedies. My tests confirmed this.

The term "fibromyalgia" is loosely and erroneously used today. The same symtoms will occur when liver function is compromised or disease is present in that organ. Waste not being process through the liver enters the bloodstream and causes inflammation [muscles]. This includes chemical drugs.

The best explanation is through a research paper by John Foster, M.D., [The Detoxx System: Detoxification of Biotoxins in Chronic Neurotoxic Syndromes] a Harvard affiliate.

When the liver is compromised, neurotoxins move upstream. "As fat soluble neurotoxins move through the cells of the body from the GI tract to sinus to lung to eye to MUSCLE to joint to nerve, whereby they eventually enter the liver and the bile. Once neurotoxins bind with bile they have access to the liver, the body is poisoned over and over again as the bile is re-circulated [first released into the intestine to digst fats, and then RE ABSORBED].

The key is healing the liver as well as healing the brain with Omega 3,6, and 9.
Linda {www.alsalternative.com}

[harley2ride]

You need to see a competent neurologist who is open to looking at the possibility that statins caused your problems. Many doctors believe that many of the diagnosis for fibromyalgia, and actually misdiagnosed, and that the people actually have statin myopathy or worse.

[Linda Paulhus]

This explanation was merely to distinguish between those who have viral-related [Epstein-Barr Virus] fibromyalgia as opposed to those who have muscular pain due to the side effects of statins as well as other drugs.

My personal situation was reversed years ago by using non-drug remedies. However, we have a family member who was dx'd with ALS. I have communicated with hundreds of PALS internationally. Those who were dx'd with ALS after being prescribed Lipitor, never had any prior history before that with neuromuscular problems. However, neurologists and primary care physicians are not documenting the fact that there is any connection between the dx and the statin drugs.

Many with neuropathy, ALS, or other forms of motor neuron disease are being told there is "no known cause for these diseases". Unless physicians start documenting this information, more and more innocent people will succumb to these diseases.

Thank you so much for this site. I continue to pass the information on to numbers of people.
Linda

[Dee]

[quote="harley2ride"]You need to see a competent neurologist who is open to looking at the possibility that statins caused your problems. Many doctors believe that many of the diagnosis for fibromyalgia, and actually misdiagnosed, and that the people actually have statin myopathy or worse.[/quote]

Harley, I would also add that any males DX with Fibromyalgia be VERY suspicious of the diagnosis. It has historically been very unusual for males to have Fibromyalgia. I used to belong to a Fibromyalgia support group, years ago, and out of 100 members, NONE were male.

I have noticed more and more men getting the "Fibro" DX. You would think the Rheumatologists would be saying, "Whoa! What is going on here?" and start putting statin use and the development of Fibro puzzle together....it seems pretty obvious to us.

As for Neurologists, when I suggested to mine that statins were causing sleep apnea (an area mine specializes in) he looked at me like I was crazy.

Where is the natural curiosity in the medical profession that should be evident? Where are the Dr. Kildare's and Marcus Welby, MDs? Surely not every doctor in the world can be letting the Pharma companies do all their thinking?

[Linda Paulhus]

95% of those dx'd with Fibromyalgia are women. You may be told by your physician that there is no known cause. Support groups more or less parrot information from the nurse fascilitator through the physician. For information: EBV virus, see [www.ccid.org.] Dr. Martin has done extensive research on stealth viruses.

The virus remains dormant until the immune system is compromised. The immune system can be compromised with statin drugs and/or other toxic elements. You may end up with a secondary condition, EBV, as the result of a compromised immune system. The HHV-6 test will resolve any questions patients may have. The HHV-6 site: [http://www.hhv6.freeservers.com/.]

A large majority of ALS patients who are tested are positive for EBV. It is rare a neuro will even suggest this test--they seem not to be able to offer anything but endless scans.

It is more advantageous [financially] for the patient not to know. Henceforth, they are prescibed pain meds and antidepressents-
Another bonus for the pharmaceuticals.

An A.A.E.M physician or A.C.A. M. physician is the best choice.

Linda [www.alsalternative.com]

[Dee]

I should have been more clear...our support group was not organized by any medical professional, it was formed and attended only by those with Fibro and the only source of research and info we had back then (1990) was a research newsletter as no one was yet on the internet. We met to discuss various treatment, thereapies (like myofacial release massage) and our concerns and questions.

I did look at the site you recommended and that is pretty much what has been presented as different theories over the years. I did spend several months on Tetracycline, Doxycycline and Minocin (not at the same time) when the mycoplasma theory was popular. Unfortunately, there was no improvement for me.


I agree with the 95% figure and the point I was trying to make is that anyone (especially men) DX with Fibro during or after statin use may not being getting an accurate DX.

Unfortunately I am "lucky" enough to have both Fibro (20 years) and statin damage (5 years), and while I can see the overlapping symptoms, I also can see a huge difference between the two.

[Linda Paulhus]

You make an excellent point and I hope many people view your comments. The description I am getting from Motor Neuron Disease patients is totally different than what I experienced with EBV. There is no muscle "wasting" with EBV. Neuros should test for viruses and that may offer a solution.

I am really disturbed that so many physicians are not documenting the deterioration. They will refer a patient out when experiencing neuromuscular issues for a diagnosis. They lead people to assume there is no connection with the drugs.