Being diagnosed with Fibromyalgia can be a long battle. You have these symptoms, pain all over and test don’t show anything. Treatment can be difficult and confusing for the patient. There is a lot of confusing attitudes about Fibromyalgia and a lot of conflicting material on the internet for the causes, symptoms and treatments.
- the underlying cause or causes still remain a mystery
- most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation
- the FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system.
- An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including:
- increased levels of substance P in the spinal cord
- low levels of blood flow to the thalamus region of the brain
- HPA axis hypofunction
- low levels of serotonin and tryptophan
- abnormalities in cytokine function
- genetic factors may predispose individuals to a genetic susceptibility to FM
- for some, the onset of FM is slow; however, in a large percentage of patients the onset is triggered by an illness or injury that causes trauma to the body. These events may act to incite an undetected physiological problem already present.
- ongoing research will test the hypothesis that FM is caused by an interpretative defect in the central nervous system that brings about abnormal pain perception. Medical researchers have just begun to untangle the truths about this life-altering disease.
- chronic widespread body pain
- moderate to extreme fatigue
- sleep disturbances
- sensitivity to touch, light, and sound
- cognitive difficulties
- many individuals also experience a number of other symptoms and overlapping conditions, such as irritable bowel syndrome, lupus and arthritis.
- pain of fibromyalgia is profound, chronic and widespread
- it can migrate to all parts of the body and vary in intensity
- FM pain has been described as stabbing and shooting pain and deep muscular aching, throbbing, and twitching
- neurological complaints such as numbness, tingling, and burning are often present and add to the discomfort of the patient
- severity of the pain and stiffness is often worse in the morning
- aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.
In today’s world many people complain of fatigue; however, the fatigue of FM is much more than being tired after a particularly busy day or after a sleepless night. The fatigue of FM is an all-encompassing exhaustion that can interfere with occupational, personal, social or educational activities. Symptoms include profound exhaustion and poor stamina
Many fibromyalgia patients have an associated sleep disorder that prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the Stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep.
Other symptoms/overlapping conditions
Additional symptoms may include:
-irritable bowel and bladder
- headaches and migraines
- restless legs syndrome (periodic limb movement disorder)
- impaired memory and concentration
- skin sensitivities and rashes, dry eyes and mouth
- anxiety, depression
- ringing in the ears
- vision problems
- Raynaud’s Syndrome
- neurological symptoms, and impaired coordination
- may be different in different people
- however, it is very likely that there are certain types of genes that can predispose people to developing fibromyalgia and other co-occurring conditions
- genes alone do not, however, cause fibromyalgia
- usually some triggering factor, such as spine disorders, arthritis, trauma, and other types of physical stressors
- emotional stressors also may play a triggering role.
- result is changes in the way the body communicates with the spinal cord and brain associated with altered levels of chemicals and proteins in the central nervous system
- for the person with fibromyalgia, it is as though the “volume control” is turned up too high in the brain’s pain processing areas.
- defined by chronic widespread muscular pain
- sleep disturbances
- cognitive and memory problems
- depression and anxiety
- more localized pain conditions often occur in patients with fibromyalgia, including:
- migraine or tension headaches
- temporomandibular disorder
- irritable bowel syndrome
- gastroesophageal reflux disorder
- irritable bladder
- pelvic pain syndrome
The symptoms of fibromyalgia and associated conditions can vary in intensity and wax and wane over time.
Stress often worsens these symptoms.
Here is a website for the world wide Rheumatalogists Directory if you need to get help to get a proper diagnoses.
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.
- diarrhea and upset stomach
- stomach pain
**Rarely, diarrhea can become so severe and persistent that it may lead to dehydration
- severe/persistent diarrhea
- stomach cramps
- severe dizziness
- decreased amount of urine
- muscle weakness
****Tell your doctor immediately if any of these unlikely but serious side effects occur:
- difficult/painful swallowing
- swelling of the hands/feet
- sudden/unexplained weight gain
- vision changes
- hearing changes (e.g., ringing in the ears)
- mental/mood changes (e.g., depression)
- fast/pounding heartbeat
- persistent/severe headache
- unusual/heavy vaginal bleeding
- menstrual problems/irregular periods
****Tell your doctor immediately if any of these rare but very serious side effects occur:
- change in the amount of urine
- easy bruising/bleeding
- signs of infection (e.g., fever, persistent sore throat)
- unexplained stiff neck
******This drug may rarely cause serious (possibly fatal) liver disease. If you notice any of the following rare but very serious side effects, stop taking diclofenac/misoprostol and tell your doctor immediately:
- yellowing eyes/skin
- dark urine
- unusual/extreme tiredness
- severe stomach/abdominal pain
- persistent nausea/vomiting
******A very serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include:
- itching/swelling (especially of the face/tongue/throat)
- severe dizziness
- trouble breathing
**This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.
In Canada – Call your doctor for medical advice about side effects. You may report side effects to Health Canada at 1-866-234-2345.
In the US -Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
PRECAUTIONS: if you are allergic to either of these drugs;
- aspirin or other NSAIDs – ibuprofen, naproxen, celecoxib
- aspirin-sensitive asthma
- recent heart bypass surgery
- certain liver problem
- kidney disease
- liver disease
- stomach/intestine/esophagus problems – bleeding, ulcers, inflammatory bowel disease
- heart disease
- high blood pressure, stroke, swelling, edema, fluid retention
- blood disorders – anemia)
- bleeding or clotting problems
- growths in the nose (nasal polyps)
**Before having surgery, tell your doctor or dentist that you are using this medication. This drug may make you dizzy or drowsy. Do not drive, use machinery, or do any activity that requires alertness until you are sure you can perform such activities safely.
*Diclofenac may cause:
- stomach bleeding. Daily use of alcohol and tobacco may increase your risk for stomach bleeding
- may make you more sensitive to the sun. Avoid prolonged sun exposure, tanning booths, and sunlamps
- elderly may be more sensitive to the side effects of this drug, especially stomach/intestinal bleeding and kidney effects.
- must not be used during pregnancy. It can harm the unborn baby and mother
*******DRUG INTERACTIONS: This drug should not be used with the following medications because very serious interactions may occur:
- high doses of aspirin and related drugs – salicylates
- cidofovir, other NSAIDs – ketorolac
If you are currently using any of these medications listed above, tell your doctor or pharmacist before starting diclofenac/misoprostol.
- anti-platelet drugs – cilostazol, clopidogrel
- oral bisphosphonates – alendronate
- “blood thinners” – enoxaparin, heparin, warfarin
- corticosteroids – prednisone, cyclosporine, desmopressin, digoxin
- high blood pressure drugs – ACE inhibitors such as captopril, angiotensin receptor blockers such as loartan, and beta-blockers such as metoprolol, lithium, methotrexate, pemetrexed, probenecid
- SSRI antidepressants (e.g., fluoxetine, sertraline), “water pills” – diuretics such as furosemide, hydrochlorothiazide, triamterene
- pain/fever drugs – NSAIDs such as aspirin, celecoxib, ibuprofen. These drugs are similar to this medication, so taking one of these drugs while also taking this medication may increase your risk of side effects
*******This document does not contain all possible interactions.
“©2013, WebMD, LLC. All rights reserved”
My 2 cents:
I was prescribed these for probably 15 years. I experienced many of the symptoms above yet the doctor never considered them being a side effect from the drugs they were prescribing. They then went on to give me more drugs for the symptoms I was having and send me to specialists for this and that, added more diagnoses and more prescriptions to the mix. Hmmm??? Beside the added expense to our health care. Believe me too, when you involve more doctors you open yourself up to a power struggle of who is right with what diagnoses and then also the ego of the doctor whom is always right. To be honest, it is hard to find doctors who agree with one another.
Did you read that this is not a complete list of possible side effect? The list just goes on and on. This is because the reports just keep coming in from people so you should keep updated and report your side effects! If you experienced heavy vaginal bleeding they would probably send you to a gynecologist and not even consider your muscle relaxant. Muscle weakness or fatigue you might have a touch of the flu. Abdominal pain, nausea or vomitting probably the same thing or send you for an ultra sound to check your gallbladder. My point here is that one drug can cause so many problems, offer so little cure and it’s side effects or adverse reactions can be masked as disease itself.