Fibromyalgia muscle pain and fatigue can be overwhelming to the sufferer. No one understands how it can wear on a person especially when you look fine. Lets have a good look at what they say about Fibromyalgia muscle pain.
I don’t know about you but as a sufferer myself, I am confused to say the very least. I am told and also read conflicting information about whether there is inflammation or not with Fibromyalgia.
One doctor say yes, one says no
One specialist says yes, one says no
One Rheumatologist says yes, one says no
One medical journal say yes, one says no
One study says yes, one says no
Wonder why the patient gets confused?
My thought on this is that the studies or tests have been done by some Fibromyalgia patients who have inflammation or arthritic conditions as well as Fibromyalgia and other studies have been on people who do not have inflammation. Or could some of these sufferers really have aspartame or msg poisoning? Read article below about Fibromyalgia and aspartame.
I know I had a lot of pain that the rest of the women did not have at the Fibromyalgia support group I went to years ago. I had widespread pain, they only had pain within the 18 tender spots they use to diagnose Fibromyalgia. The inflammation in my body definitely goes with dietary choices as well as weather.
Thousands are being diagnosed now with this illness called Fibromyalgia. It has either
become a catch all for cases they can’t explain or it is becoming an epidemic. That is
why I have been researching what illnesses are being misdiagnosed as Fibromyalgia,
so far I have uncovered a few, check out my article at:
I was checking out the FDA website for something and I came across an article about the new drugs recently approved.
They were all approved on January 20, 2011. They are all made out of leuprolide acetate the same drug Lupron Depot that shut my body down in 2000, now they are bringing it out under different names. (see information on Lupron below).
I was looking through some old paperwork and came across a letter I had written about my experience with the prescription drug Lupron, leuprolide acetate. Here is my story I wrote just after taking Lupron in 2000, thank god we forget pain:
On January 2000, I went to my gynecologist. He diagnosed me with a cyst on my ovary. He said that the drug Lupron would shrink the cyst and I could avoid surgery. I asked about the side effects, he said it was only hot flashes and temporary menopause, but all goes away after the drug is done. He made it sound like a picnic. I thought that the drug was the way to go, sounded like no big deal and to avoid an operation again, why not? (I had my ovary removed surgically when I was 18 due to a cyst).
He gave me a 3 month dose Jan 13, 2000 or 11.25 mg of Lupron Depot in an injection form. Approximately 4 or 5 days later my skin started to crawl throughout my whole body, permanently day after day, creeping through my skin like waves of bugs crawling. I began to have trouble breathing, and was unable to get moving. I went to two different doctors, was given a prescription by one, told to quit smoking by another. I did both but neither seemed to help.
We had went out to dinner one night because we had pre-arranged it with friends (yes that’s me, didn’t want to wreck anybodies plans even though I was in anaphylactic shock, I am a pretty tough soul!). While I was sitting there all of a sudden it felt like bubbles of liquid going into each of my lower front ribs, one at a time like dominos, then it crept it’s way up throughout my ribs in my whole chest and stayed as severe pain. My chest was crushing with chest pain, and I was having trouble breathing. I felt drained and sick all over and very pale. I laid on the couch for days, not being able to do anything and the pain was only getting worse.
I finally went to the hospital because I knew it was serious and out of my hands. They put me on a heart monitor and admitted me right away. My heart was either beating at 41 bpm. or erratically all over the place. All they could do was fill me with pain medications and anti-inflammatories. The hot sweats were starting; actually it was more total body sweats yet I was freezing cold. My kidneys were working overtime.
Upon the first discharge from the hospital I got dizzy and fell onto the floor so they kept me another night. They diagnosed muscle-skeletal pain and heart problems due to the Lupron. Day by day different symptoms arrived, that was only the beginning of months of hell that followed for me.
When I stood up my skin felt so heavy it felt like it was falling off my body.
I had muscle-skeletal pain throughout my whole body, esp. the rib and breast bones.
Dyspnea, difficulty breathing.
Body sweats and chills, ghostly-white complexion.
Shrieking skull pain, migraine on right side of head.
I had huge cramps throughout my legs, pain in lower, outside, right leg.
Breast pain, loss of sexual desire (well who could think about sex with all this going on???)
Cold body, temperature 93.3 F
Low heart rate or racing heart.
Stomach swelled up, dehydrated, excessive thirst.
Throat swelled, feeling of choking.
Bowels quit working, kidneys working overtime.
Numb cheeks and limbs.
Visual disturbances, right eye teared constantly.
Nausea, dizziness, shakes.
Spinal tremors, irritability, nervousness.
Sore teeth, left jaw pain.
Cardiac arrhythmia, palpitations.
Lower back pain.
Intensified rash and swollen lymph nodes.
Every evening at 8 pm my throat would swell and I could actually feel the serum pump out of my throat down into my chest, then throughout my body. The chest and breast pain would increase, my heart would start pumping wildly, my stomach would ache, cramping would increase, body sweats, cold body, and total exhaustion would set in.
I had to spray my entire mid section with muscle pain spray for weeks on end because the drugs didn’t even touch the pain. The horror went on day after day after week after week which turned into months. My Lupus and Fibromyalgia were flaring big time by now. I was gray in color and totally lifeless and I felt like I was going to die. It was the darkest time of my life.
After calling the Doctor who prescribed the Lupron to me, he sent me away saying, go see a cardiologist, there is no way Lupron would do that. It took over 3 months for the drug to quit the “flare effects: and 169 days to be eliminated (supposedly, according to science! I think it is still in my ribs as I have severe rib pain to this day), many natural remedies and 6 months for menstruation to return. Now all that was left was the damage. I also broke two teeth on Lupron.
No one had an antidote to stop this drug from terrorizing my body, so I took my dying body to a Naturopathic Doctor. She put me on some homeopathic medicines and herbals right away and miraculously she took that overwhelming feeling of death away. She said I was grey in color when I came in and that was almost 2 months after the shock set in.
I got my internal orans tested from electro dermal screening and they showed severe stress on all my internal organs, especially the heart, gallbladder, lymphatics, kidneys, bladder, thyroid, liver, adrenals and central nervous system. This was a direct result from the Lupron.
It totally devastated me and my family. Never again! I am going to continue to see a Naturopathic Doctor. She took away the numbness in my cheeks, the swelling in my hands, the shrieking skull pain, the dizziness, the total exhaustion, the rash is clearing up, I have some colour back and some energy.
I still have a long way to go but she helped me out of the severe stress that Lupron put me in. I have seen enough improvement to convince me, Naturopathic medicine is the only way out of a major adverse drug reaction or perhaps any major health crisis. I know who’s hands I feel safe in now.
Isn’t it amazing that they are so willing to pay $1188.00 (times two as it was only half the prescription, I opted out for round 2!)
God, I forgot how ill it made me. I am not a doctor, or a lawyer and this drug is approved by the FDA but not in my lifetime would I recommend it to any human. I actually would warn anyone not to use Lupron, but that is just my opinion through a very bad experience! It’s your body!
This was approved years ago by TAP, they had multi million dollar fines from it, so I suspect these are new companies that want to get in on the sales with this drug too. I think we will be hearing more people being prescribed this drug again. How can the FDA approve
I also would like to note that the cyst was still there after all was said and done. It was the herbals that took the cysts away. Now I believe that I could have avoided surgery when I was 18 as well.
I get the willies through my body when I see or hear the name Lupron. I will write this article but I won’t be reading it again, I just wanted other to know that you could experience side effects. When I was part of the Lupron victims website (10,000+ victims), there was a few deaths as well as heart attacks and stokes beside the multi symptoms and serious organ involvement from thousands of women as well as men. It is a drug given to men for prostrate cancer as well so you might want to check it out too guys. See http://www.lupronvictimshub.com/deaths.html for a long list of male deaths after taking Lupron.
January 20, 2011
Read more other articles on Lupron:
Despite these many risks and negative experiences, manufacturers of leuprolide acetate have continued to market the drug for existing and new uses — most notably, as a treatment for prostate cancer. But a former U.S. Food and Drug Administration medical officer has said that Lupron’s manufacturer, TAP Pharmaceuticals, did not study the drug adequately before or after introducing it to the market, and he alleged that the company hid what it knew about risks of bone density loss, generalized pain, headaches, fluid retention, depression, and immune and nervous system problems, including spinal fracture, convulsions and paralysis.
After all that busy Christmas rush I know you are feeling the Fibromyalgia pain now sister. I am inspired to help you and to let you know there is someone who truly understands where you are coming from. How can you possibly understand how much pain someone is enduring unless you have actually experienced it? I find it hard to believe some days myself how “IT????” can just beat me up like I was on the receiving end of a baseball bat. I say to myself sometimes, how can I possibly have this much pain? It can be so intense and so severe that you are sure there has to be something seriously wrong. That hot, burning, nagging pain that makes you feel like you could throw up. What is even worse is a Dr looking over his glasses at you saying, “You just need to exercise!” Uggggg!! How frustrating and humiliating! I have exercised my whole life, give me a break!
I eat well and exercise so my frustration comes from the fact that most people and Doctors judge you by the way you look, those who believe if you look fine then you are healthy! Or on the other end, you are judged as being lazy and a hypochondriac. Have we had a hard time being recognized because it is a male dominated world of Doctors who think we are being lazy bitches? Whiny women? Hmmm. Is that why it took so long to even be acknowledged as being real? I am not weak, whiny, lazy or a hypochondriac. I am just looking for the root cause of the pain to cure it. I am truly sorry if you have had to endure any of these experiences, I understand the trauma it has caused you.
This is why I created this website, for you, the Fibromyalgia women who have been through hell with this extremely painful condition that you can’t see. I am empathetic to you for all you have been through, all you have endured, and for those of you who have been scoffed at, belittled, disbelieved, and misunderstood. I hear you sister and I am here to help you!
The holidays can be very stressful and physically, mentally and emotionally draining for the average person but this can mean an intense flare for Fibromyalgia sufferers. Christmas over-indulgence can lead to intestinal upset and all kinds of digestive problems to boot. I have a lot of food allergies and it is really hard to say no to everything around Christmas time and I pay for it! Find your hidden food allergies, your body will thank you for it.
The best post Christmas gift you can give yourself is to take some time out for you! Take an Epsom salts bath, it will help soak away a lot of pain so you can better deal with whatever pain is left. I grow fresh herbs in my garden in the summer, dry them and make herbal bath bags. The herbs help with a lot of pain and help replenish as well as detoxify your body depending on what combination you brew. You can also use aromatherapy and a relaxation tape or your favorite music while you are soaking your painful body, you can be relaxing your stressed mind as well. You owe it to yourself!
Share your comments or experiences below!
Here is an article I found from Sciencedaily.com that gives some understanding to those who have suffered with the debilitating pain of Fibromyalgia:
“Fibromyalgia is a condition that’s characterized by widespread pain involving the muscles, the joints, and in fact, any area of the body,” explains Daniel Clauw, M.D., director of the U-M Chronic Pain and Fatigue Research Center. “In addition to pain, individuals with fibromyalgia often experience sleep fatigue, difficulties with sleep, and difficulties with memory and concentration, among other symptoms.”
Josephine’s symptoms included extreme fatigue, recurring headaches, chest pains, stomach and intestinal problems, muscle fatigue and weakness, restricted mobility, and anxiety. At her worst point, Josephine was bed-ridden and medicated to the point that she wasn’t functioning due to the pain.
However, there is hope. “Fibromyalgia is gaining respect in both the scientific and the lay community because of all the research that’s been conducted – first, showing that it’s a real disease, and second, showing that there are drugs that specifically work to treat fibromyalgia,” Clauw says. “Our group and others at the University of Michigan have been very involved in looking at the underlying mechanisms of fibromyalgia.”
Clauw and his colleagues use a technique called functional imaging, which allows scientists to look at how different areas of the brain function when people are given painful stimuli. What they have found is that for the same amount of damage or inflammation in the peripheral tissues, a fibromyalgia patient would feel significantly more pain than the average person. Patients with fibromyalgia can also experience pain throughout their entire body even without any damage or inflammation of the peripheral tissues.
“We think that one of the primary abnormalities in fibromyalgia is an imbalance between the levels of neurotransmitters in the brain that affect pain sensitivity,” Clauw says. With this knowledge, new treatments are being developed to combat the condition’s symptoms. “Although right now there are no drugs approved to treat fibromyalgia, within three years it its likely that there will be three, if not four, drugs specifically approved to treat the condition,” he says.
These drugs fall into two general classes. One class raises the levels of neurotransmitters that normally stop the spread of pain, while another class lowers the levels of neurotransmitters that normally increase the spread of pain.
The American College of Rheumatology estimates that about 3 percent of Americans suffer from fibromyalgia, but Clauw notes that this may not accurately reflect the number of people with this condition. “It’s widely agreed that their definition is very restrictive. In fact, it’s probably more like 5 or 6 percent of Americans,” he says.
There are other misunderstandings about fibromyalgia. Some physicians believe that its symptoms are all psychological. “The doctors say, ‘Well it’s all in your head, you just need to get some extra rest and you’ll be fine, toughen up,’” Josephine remembers. Another misconception about the disease is that it is caused by inflammation in the muscles. Doctors now know that neither of these theories is true. “This is not an inflammatory disorder and this is not a primary psychological condition,” Clauw clarifies. “Pain is always a subjective matter, but everything that we can measure about the pain in fibromyalgia shows that it is real.”
Unfortunately, patients are often misdiagnosed as having disorders such as rheumatoid arthritis, chronic fatigue syndrome, or irritable bowel syndrome. Fibromyalgia has no definitive diagnosis, so doctors must rely on a patient’s medical history and symptoms when diagnosing the illness, excluding conditions that might cause similar amounts of widespread pain.
The condition’s cause is still unknown, although it is probably a combination of genetics and environment. “A person is about eight times more likely to develop fibromyalgia if one of their relatives has it,” says Clauw. “But there are also certain environmental triggers. For example, people develop fibromyalgia after motor vehicle accidents, or after certain types of infections or biological stress,” he continues. Although the disease is more common in women, there are no real demographic factors that can predict its development.
Clauw recommends that anyone who experiences pain or fatigue that is severe enough to inhibit day to day functioning seek medical attention, even if the symptoms have only lasted a couple of days. “It’s better to get medical attention and appropriate treatment early for this condition,” he says.
As for Josephine, maintaining a positive attitude and acknowledging and accepting the disease has helped her live a more normal life. “I know that I will always have this disease, but now I see myself as a survivor,” she says.
Read the full article here:
Even though women’s greater susceptibility to autoimmune diseases has been recognized for more than 100 years, only recently has attention focused on this topic.
DeLisa Fairweather* and Noel R. Rose*
*Johns Hopkins University, Baltimore, Maryland, USA
Autoimmune diseases affect approximately 8% of the population, 78% of whom are women. The reasons for the high prevalence in women are unknown, but circumstantial evidence links autoimmune diseases with preceding infections
What do you think?