Q. What is the difference between chronic fatigue syndrome and fibromyalgia?
A: .There are wide differences of opinions on the two conditions, even among medical experts. Most would agree that fibromyalgia and chronic fatigue syndrome (CFS) are similar, and probably related, disorders. One faction in the fibromyalgia/CFS debate believes these are simply two names for the same thing, while others say they are completely different and still others (though their numbers are small and diminishing) contend that neither condition exists at all.
My opinion is that the conditions are similar and probably related. Pain, fatigue and a host of other problems are seen in fibromyalgia. CFS displays similar symptoms. However, a practical way to differentiate the disorders is that pain is the predominant problem in people with fibromyalgia, whereas fatigue is the major complaint in people with CFS.
The pain of fibromyalgia is typically chronic and widespread, and is often associated with stiffness. On examination, many patients have specific sites (called tender points) that are extremely tender to touch. The detection of these tender points is helpful in making a diagnosis of fibromyalgia.
The fatigue seen in people with CFS is generally profound, and can be completely incapacitating. Criteria for CFS established by the Centers for Disease Control and Prevention (CDC) are fatigue that has been present for more than six months and is accompanied by the following:
- a sore throat;
- enlarged or tender lymph nodes;
- muscle or joint pain;
- other signs of systemic illness.
Signs and symptoms that are commonly present in botfh fibromyalgia and CFS include the following:
- sleep disturbances;
- headaches;
- impaired memory or concentration;
- dizziness;
- bowel complaints (such as bloating, diarrhea and/or constipation);
- anxiety or depression.
Despite the differences between fibromyalgia and CFS, the approaches to treatment of the two disorders are, in fact, quite similar. Most patients benefit from education about the conditions, participation in local and national support groups such as the Arthritis Foundation Self-Help Course, the use of low-dose antidepressant drugs at bedtime to improve sleep, as well as low-impact aerobic exercises.
For more information on fibromyalgia, contact your local Arthritis Foundation office and ask about fibromyalgia resources.
John Klippel, MD, Rheumatologist
My name is Tim Oesch, and I’m a medical doctor in Oak Ridge, Tennessee. I am treating numerous fibromyalgia and/or chronic fatigue patients who are remarkably improved from taking doses of Vital B12, and sometimes sodium thiosulfate, alphaketoglutaric acid, and vitamin B6. Vital B12 is a 50/50 combination of hydroxocobalamin and methylcobalamin. Hydroxocobalamin is an FDA approved antidote for cyanide poisoning; and methylcobalamin binds cyanide and is beneficial to the nervous system, and also enhances the body’s sulfur-based detoxification system which plays a major role in metabolizing cyanide. I believe cyanide air pollution is the world’s leading cause of fibromyalgia, and perhaps the only cause of fibromyalgia; and I also believe that airborne cyanide is a major cause of chronic fatigue syndrome. Following are two testimonials from persons I’ve treated for fibromyalgia with safe antidotes for cyanide poisoning; a paragraph from a novel entitled The Poisoned Planet; information on how to acquire treatment; and a scientific explanation of how cyanide causes fibromyalgia. The first testimonial comes from an author who has given permission for her identity to be given. Although I do not have fibromyalgia myself, I’m on treatment for CFS, which is exactly the same treatment as for fibromyalgia, and the treatment helps me tremendously.
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From a Young Author with Fibromyalgia (age 32):
Martha McBryar --- author of 9 books, her favorite is Days of Blood and Magic.
Before beginning treatment, my best days were wracked with pain and inability to focus or accomplish the simplest things. I don't know how many days I cursed my body and it's inability to perform simple tasks. Since beginning treatment, my quality of life has improved on levels I never thought were possible. The fibro fog, which makes it difficult to focus, has also lessened to the point that I rarely notice it. I've begun losing weight since I am now able to be more active. This treatment has changed my life for the better. Less pain, less fog, no more crying jags because of the things I couldn't do.
If you suffer from fibro, I urge you to try the treatment. I take the full treatment and I haven't felt this good in over 15 years!
Martha L. McBryar
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Lady Age 70 with Fibromyalgia ---
When we lived in Iowa I went to a Rheumatologist in Des Moines to, I thought, be diagnosed as to what kind of arthritis I had. My whole body ached all the way to my fingertips. After the doctor examined me, he said that I didn’t have Rheumatoid Arthritis. He said I had a tad bit of osteoarthritis but what I did have was Fibromyalgia and he didn’t need to see me again! That had become a new word in my vocabulary!
I found that this was something I had to live with, but what would help is if I didn’t over do my daily tasks. That is hard to do. My brain was fuzzy and I had a hard time focusing on tasks that had to be done. I attributed it to early onset of old age! But I was glad this wasn’t something that was terminal.
You prescribed VITAL B 12 KIT#1. Before I left the office I was given my first Vital B12 shot. All I could say was “Wow!” Almost instantly I experienced something that I can best describe like when the sun is behind the cloud and all of a sudden the cloud goes away and the sun shines. I felt like a totally new person! It was unbelievable. I even wondered if it was my imagination! But we bought the KIT at the Jefferson Compounding Center in Oak Ridge before we returned home. I give myself a Vital B12 shot every third day and I can tell you that I feel like a different person! Instead of moving slowly when I go from place to place in our home I find myself moving more rapidly and I am getting more things accomplished. I can think more clearly. I can read and absorb what I read. Before I would read a paragraph and at the end of the paragraph I wondered what I had read! As I look back, I am convinced that I was suffering from Fibromyalgia long before I was diagnosed.
I hope this gives you some indication as to how your discovery has changed my life.
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From The Poisoned Planet, by Timothy R. Oesch.
Presently, the best test on the planet’s surface for environmental cyanide intoxication is a trial of treatment. Even though most cyanide remains in the troposphere of outer earth, the poison is measurable in the ionosphere; so all humans upon the earth’s surface inhale varying quantities of cyanide. Since inhaled cyanide quickly flees the bloodstream, blood tests for cyanide are not very useful unless blood is drawn within minutes of inhaling a relatively large concentration of cyanide. This propensity for cyanide to flee the bloodstream may explain why vitamin B12 levels are decreased in the tissues of persons with fibromyalgia while the blood levels of vitamin B12 are not as decreased. Urine thiocyanate is the preferred test for environmental cyanide exposure, but keep in mind that this test is imperfect because thiocyanate is excreted variably. Furthermore, some of the persons most vulnerable to illness from cyanide exposure may have decreased activity of sulfuryl-transferase (also known as rhodanese or rhodanase), an enzyme necessary for metabolizing cyanide to thiocyanate; so these persons would be expected to have exceptionally low levels of urine thiocyanate even though they are exceptionally sensitive to cyanide. Hopefully a micro-allergy test for cyanide-induced autoimmunity will reappear upon the earth’s surface---something comparable to the lymphocyte proliferation test for beryllium sensitivity.
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My recommendations for treating fibromyalgia follow. If you would like more information in regards to cyanide air pollution and its effects, I provide such information in The Poisoned Planet, a novel. The novel is available through Amazon books, Barnes & Noble, Kindle Press, and Nook Books. Following is plenty of information for treatment without buying the novel. If you have any questions about this E-mail, or if you have any questions after reading The Poisoned Planet, then feel free to E-mail me at Tim_Oesch@teamhealth.com
My recommendations for treating fibromyalgia follow:
A prescription for Vital B12 may be written as per the sample below and then mailed or faxed to a compounding pharmacy (three compounding pharmacies that ship long distance follow):
Provider: Date:
Patient: __________________________________ DOB: ________________________
Rx: 25mg/cc Vitamin B12 as---12.5mg hydroxocobalamin/12.5mg methylcobalamin
Quantity: 10cc
Sig: 0.3cc SC (subcutaneously) or IM (intramuscularly) every 3 days (or up to 1cc every 3 days) (Note --- if needed, the dose may be increased up to 0.4cc daily.)
Signature of Provider: ____________________________________________
Refills: ____________________
(Note: May also have 30 to 90 of the B12 syringes and needles if requested.)
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
Note to Patient: (You may cut along the dotted line and keep the bottom of this sheet.)
When using this product, also take Vitamin B6, 50mg four times daily; Folic Acid, 400mcg am and pm; and Vitamin D, 1,000 IU daily.
*Note: Keep the Vital B12 refrigerated. Storage life is 3 months. A usual dose is anywhere from 0.3cc to 1cc either IM (intramuscular) or SC (subcutaneous) every 3 days. When taking 0.3cc every three days, 10cc should last 3 months.
** I also recommend taking another antidote for cyanide intoxication, namely Sodium Thiosulfate. Take 1/64th to 1/32nd tsp (a pinch) every 2 to 3 hours while awake. Either dissolve the salt in water & drink, or just let it dissolve in your mouth and swallow it. If the salt causes any gas or diarrhea, then lower the quantity taken with each dose; but do not decrease the frequency of dosing since the half-life of sodium thiosulfate in the bloodstream is about 20 minutes. It is handy to carry some of the salt in a ziplock bag in your pocket. Sodium thiosulfate may be acquired without a prescription. One may also eat some nuts and/or drink a protein drink with sulfur-containing amino acids before bed.
(Note to compounding pharmacist --- sodium thiosulfate may be purchased via the Internet from such sites as http://www.mubychem.com/Buy-Sodiumthiosulfate-Sodiumthiosulphate.htm .)
***One additional antidote for cyanide that I recommend taking is alpha-ketoglutaric acid. Alpha-Keto Glutaric Acid is an antidote for cyanide intoxication, and it works synergistically with sodium thiosulfate. I recommend drinking 1/8th teaspoon (about 563 mg) of alpha-ketoglutaric acid in 8 ounces of water 3 times daily, in the middle of each meal. It dissolves easily in cool water. Smaller doses may be used, but take at least 1/16th teaspoon. If your stomach tolerates the acid drink well, you may also take doses between meals for up to 6 doses daily; but heartburn may occur if taking doses on an empty stomach. Take doses at least 2 hours apart. When taking alpha-ketoglutaric acid apart from a meal, swish and swallow a mouthful of water after each dose. Alpha-ketoglutaric acid may be acquired without a prescription.
(Note to compounding pharmacist---Jo Mar Labs sells the alpha ketoglutaric acid at the price of $24.30 for 150 grams, and this product may be found per the following Internet site --- http://www.jomarlabs.com/alpha-keto-glutaric-acid-6.html . The phone number for Jo Mar Labs is 1-800-538-4545. Individuals may also order directly from Jo Mar Labs. 150 grams lasts about 10 weeks at the recommended dose.)
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For patients that have a phobia of needles, transdermal Vital B12 may be prepared by mixing 15mg Vital B12 (7.5mg of hydroxocobalamin and 7.5 of methylcobalamin) per cc of lipoderm gel; and a nose spray can also be formulated. The gel has a storage life of about 6 months if kept refrigerated, and a storage life of about one month at room temperature. One-half cc of the gel may then be applied to hairless skin, such as on the inner thigh, every 3 days. When desired, one-half cc (7.5 mg) may be applied daily. The injections, however, seem to work best.
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Any local compounding pharmacy will hopefully be able to provide all of the treatments given above. Following is data regarding three compounding pharmacies that provide Vital B12:
Jefferson Compounding Pharmacy in Oak Ridge can provide cyanide treatment kits that contain about 3 months supply of Vital B12, thiosulfate salt crystals, vitamin B6, folic acid, and alpha-ketoglutaric acid; along with needles and syringes for injecting the Vital B12; and they can also provide the lipoderm gel form of Vital B12 if preferred rather than the injections. They can also sell the different components separately and in varying quantities. You may call the pharmacy from 10am to 5pm EST Monday through Friday, and from 9am to 4pm on Saturdays. The lab technician’s name is John Greene, and the pharmacist is Jack Greene, DPh. Receptionists can also take orders. Only the Vital B12 requires a prescription, and the other agents may be requested without a prescription. The pharmacy will ship to outside locations---phone number (865) 483-3007; fax number (865) 483-3071; address 22 N Jefferson Circle; Oak Ridge, TN; 37380; U.S.A.
(Jefferson Compounding Pharmacy will give a receipt, but does not file insurance.)
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The pharmacy listed below has been very helpful in filing insurance for patients. Hopewell Pharmacy can provide both the injectable Vital B12 and the transdermal Vital B12:
Contact data for Hopewell Pharmacy follows: Phone: 1-800-792-6670 Fax: 1-800-417-3864
Contact Person: Debra Halton, pharmacist.
Address: Hopewell Pharmacy & Compounding Center
1 West Broad Street
Hopewell, NJ 08525
U.S.A.
E-mail: info@hopewellrx.com
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Another compounding pharmacy for persons whose insurance does not cover Vital B12 is P3 Compounding Pharmacy in Knoxville, Tennessee. Data regarding this pharmacy follows:
P3 Compounding, with address, phone, and fax as follows: 8848 Cedar Springs Lane, Suite 100 Knoxville, TN 37923. The compounding pharmacist is Tim Smith, Pharm.D., FABC, FASHP.
Phone: (865) 769-5180 Fax: (865) 769-5179
This pharmacy is experienced in producing Vital B12 nasal spray or Vital B12 transdermal gel for persons with a phobia of needles.
(P3 Compounding will give a receipt, but does not file insurance.)
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Feel free to Email me if you have questions. My Email is Oesch@bellsouth.net
May God Bless,
Timothy R. Oesch, MD.
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Fibromyalgia and Cyanide Sensitivity:
In 1982 a microallergist in Houston tested 43 persons (mostly nonsmokers) who were suspected of or diagnosed with cyanide intoxication resulting from airborne cyanide pollution. He found that 25 (58%) of these persons tested positive for immunological sensitivity to cyanide, whereas only one of 200 control patients tested positive. As the primary physician treating most of these patients, I came to recognize that the more common symptoms of cyanide intoxication included such things as fatigue, depression, headache, decreased resistance to infections, restless sleep, weakness, muscle cramps, forgetfulness, inability to concentrate, exercise intolerance, muscle aches, and joint pain. Comparatively, the National Fibromyalgia Research Association listed symptoms occurring in 40% or more of fibromyalgia patients as muscular pains, fatigue, insomnia, joint pains, headaches, restless legs, numbness and tingling, impaired memory, leg cramps, and impaired concentration. Additionally, nervousness was reported to occur in 32% and major depression in 20% of patients with fibromyalgia.
In testing for sensitivity to cyanide, the microallergist in Houston spun blood at low to medium speed (1,500 rpm) then collected the buffy layer of serum and discarded the platelets from the top. He diluted the buffy layer slightly, using about six parts serum to one part sterile water, to acquire a solution which contained about 100 white-blood-cells per field using 450X magnification plus a 15X viewing lens. Using meticulously cleaned glassware and equipment, he prepared antigen jelly slides using Vaseline petroleum jelly as an inert base. Generally, twenty milligrams of an antigen to be tested were mixed in 20 milliliters of water and allowed to sit overnight. About 2.5 drops of this antigenic solution were placed on a ring of jelly which was about 1 cm in diameter. One large drop of WBCs was added to each antigen-jelly slide. On control slides, the WBCs would not disrupt for about 2 to 3 hours; whereas on slides where sensitivity was determined to exist, cells would disrupt in about thirty minutes. The speed and degree of disruption of the white-blood-cells was observed, and the degree of sensitivity was determined from such observation.
Although some of the persons determined to be suffering from cyanide intoxication did not show "sensitivity" to cyanide at all (and may have been suffering due to metabolic inadequacies rather than immunological sensitivity); other persons, some of whom were notably ill, did show marked sensitivity. Cyanide is a small molecule which may not be antigenic, but cyanide binds to several enzymes and other entities within the body, and the resultant molecules may be antigenic. In addition to binding to cytochrome oxidase, cyanide reportedly binds to catalase, peroxidase, methemoglobin, hydroxocobalamin, phosphatase, tyrosinase, ascorbic acid oxidase, xanthine oxidase, and succinic dehydrogenase; and it has been noted that these reactions may contribute to cyanide's toxicity. [1, 2]. Furthermore, as mentioned in a preceding paragraph, cyanide is reportedly a carboxylase inhibitor. [3]. Thus, cyanide bound to one of the aforementioned agents may create an entity which is immunologically antigenic in some persons; and this may explain the significant degree of aching muscles and/or joints encountered in fibromyalgia.
I would hypothesize that persons who develop immunological sensitivity to cyanide may still suffer from cyanide intoxication secondary to impaired ability to metabolize cyanide (which may, in fact, have greatly contributed toward developing immunological sensitivity); and that those persons may also suffer added muscle and joint pain due to immunological reaction to cyanide in the tissues (which is more likely an immunological response to substances formed by the combination of cyanide and tissue entities). Such a hypothesis may be investigated by testing thiocyanate levels during periods of exacerbated illness, as well as observing response to proper treatment with specific antidotes to cyanide intoxication. Treatment of patients with cyanide intoxication who are immunologically sensitive to cyanide may, however, prove more challenging than treating patients with cyanide intoxication who are not immunologically sensitive; and such treatment may require very consistent and thorough maintenance doses of the prescribed remedies. To some extent, avoiding exposure to cyanide may sometimes be possible, and may help in treatment. Cyanide, however, may be released into the atmosphere from the burning of organic or synthetic compounds containing carbon and nitrogen, such as with the burning of fossil fuels like coal and gasoline. Thus, when mankind began using fire for cooking and heating, this accomplished the advent of air pollution containing cyanide---an advent which was appreciably compounded by the invention of smoking and by various industrial processes. Furthermore, over 2,650 plant species can produce hydrogen cyanide when eaten, including edible plants such as almonds, pits from stone fruits, sorghum, cassava, soybeans, spinach, lima beans, sweet potatoes, maize, millet, sugarcane, and bamboo shoots. [4, 5, 6] Nonetheless, I believe that increased polluting of the air with cyanide constitutes the major source of cyanide contributing to cyanide intoxication in the United States. The half-life of cyanide in the atmosphere is estimated at 1 to 3 years, and perhaps 98% of airborne cyanide remains in the lower atmosphere. China’s atmosphere may reach the west coast of the United States in less than a week.
References
1.) Ardelt BK, Borowitz JL, Isom GE. Brain lipid peroxidation and antioxidant protectant mechanisms following acute cyanide intoxication. Toxicology 56:147-154, 1989.
2.) Rieders F. Noxious gases and vapors I: Carbon monoxide, cyanides, methemoglobin, and sulfhemoglobin. In: DePalma JR, ed. Drill's pharmacology in medicine, 4th ed. New York, NY: McGraw-Hill Book Company, 1180-1205, 1971.
3.) De Metz M, Soute BAM, Hemker HC, Vermeer C. The inhibition of Vitamin K-Dependent Carboxylase by Cyanide. FEBS Lett 137(2):253-256, January 1982.
4.) Seigler DS. Cyanide and cyanogenic glycosides. In: G.A. Rosenthal, M.R. Berenbaum, eds. Herbivores: their interaction with secondary plant metabolites. Academic Press, New York, N.Y. 35-77, 1991.
5.) Swain E, LI CP, Poulton JE. Development of the potential for cyanogenesis in maturing black cherry (Prunus serotina Ehrh.) fruits. Plant Physiol (Bethesda) 98(4):1423-1428, 1992.
6.) Fiksel J, Cooper C, Eschenroeder A, et al. Exposure and risk assessment for cyanide. EPA/440/4-85/008. NTIS PB85-220572, 1981.
I take 5 HTP every night before bed (300mg) along with 50 mg of magnesium. (the mag helps the body make serotonin using the 5 HTP)
Every morning i take a multivitamin, another 50 mg of magnesium, malic acid (1 pill), omega 3 fish oil (1000mg), and P-5-P (1 pill) make sure you eat well after taking these or your burps may taste funny...
I also take a chew-able tablet of D-ribose, which is a simple sugar that the body needs to help with energy levels, several times a day. Kind of like taking an energy shot except its much healthier. The ones I take taste like orange juice and i really like them.
I would start off doing this, but take 50 mg of 5 htp at first and up it by 50 mg if it doesn't help you sleep. I would be careful of going over 300 mg, but I've heard of ppl going up to 500 mg. I may end up doing that myself. Talk to your doctor about this. If the 5 htp doesn't work and you are taking A LOT of it, the doctor may be able to give you melatonin supplements which will definitely help you sleep.
I used other medicines prescribed by the doc and they made me really sick. I have been doing this for a little while and have noticed that it has helped some. You also should watch the videos of a talk from Dr. Murphree. He has been studying and treating fm for a long time and has some insights that I found helpful.
then again it seems to have worked and I am being taken seriously now and was referred to a pain specialist. I was told hopefully they would set me up with a fentanyl patch or something similar for more consistent pain control as well as decreasing the potential risk to my kidneys that the current oral narcotic pain meds pose. As Cathy suggested we should pray and offer whatever support we can to one another. Even if it is only to share our stories so we know we are neither alone nor crazy.
I am in too much pain to go into NYC.
My address is; bodenheim@verizon.net.
Please, someone, find me a good FM specialist in the White Plains section of New York.
I appreciate it.
God Bless!
Thank you all for your words.
I was diagnosed several years ago with borderline rheumatoid arthritis and fibro (about 3 years ago). I started out with Ulcerative colitis in my late twenties, and had severe joint problems them which they thought were from the UC.
I had iritis, now have blephritius.
I have lost my hair (alopecia), have weird forms of exzema (blisters on the hands and bottoms of my feet) and now have it up my leg and on the tops of my feet.
My joints hurt, some worse than others, I can't stay awake when I am supposed to, I sleep by flipping and turning constantly, I get fibro fog when I am tired, and have neighbors who think I am getting altzheimers! I get tired of explaining it to others who really don't get it.
I do have a wonderful rheumatologist that does listen to me and a chiropractor who helps me with a lot of the back and shoulder pain.
I have osteoarthritis which is crippling my hands and feet at this point. Sometimes I do not know what causes the pain!!
I try to do the same stuff as my family but when I push myself I have to sleep for at least a day to get over it.
I am on Rhemacaid for the arthritis, which helps me with my gut problems and my lower joint pain, Am now on Lyrica (helped me so very much) and no pain meds other than nsaids at this time. I started on prescription vitamin D since my level was 0, and now just take an over the counter D3 daily. It does make a difference.
My life has changed forever with these diseases. I know that I have to push to get out there and feel better but when I do I pay for it. I am sure after reading what you all have shared that I probably have chronic fatigue too. I just can't make myself move most days.
I do get depressed being at home and feeling so bad.
I have a special needs son that is 25 and I care for him and take him where he needs to be but it is so very hard to force myself to get up and do that before I am ready each day.
I am not sure what the future holds for me but I do hope for a cure before I cannot walk anymore.
Also, from the long list of comments here, it is easy to see how many people's lives are affected by fibro and chronic fatigue. I have had fibromyalgia for decades. It changed the trajectory of my life. I've tried so many treatments over the years. Lyrica does seem to ease my pain, though I still have days when I am nauseous and lose my appetite. Anyone else have this stomach problem? I am thinking this fits more into the symptoms of chronic fatigue.
I've heard of a natural product called Zynaflam, supposed to be very good for pain. I'm thinking of trying it, and if it's that good, hopefully I can get off prescription pain meds.
I have been praying for doors to open for those of us who suffer, especially those who have no ear of compassion to hear them, and who can't afford their care.
I did find that changes in my diet, eating more natural fresh foods, cutting down on meats, sugars, starches helped, along with cleansing routines, and using infrared sauna, massage, and swimming were all helpful. I couldn't afford massages, so I bought my own essential oils and massaged myself, focusing on the swollen nodes at all my joints. I would swear by it that it helped reduce the severity of it.
The depression thing is very difficult and will suck the life out of you. It is a battle, but I do try to catch myself before I go too far down the black hole. Don't take your own life, your feelings help tell someone else here that they aren't crazy and they are not alone in this. We share this with you.
I have come to understand why people will buy drugs off the street for their pain, if no doctor will help them because severe pain will make you very desperate. Not that I agree with it, but I do understand why people do it.
I agree that gentle exercise is helpful, but the fatigue and depression make it very hard to get started. The winter cold in Ohio is very hard on me, partly because of the tendon pain at every joint, the stiffness, and partly because of SAD. And Ohio winters are very long. So that's where the infrared saunas and indoor pools come in.
I hope my suggestions are helpful to someone out there, and we can all benefit by praying for one another.
I am 58 years of age and have for a number of year’s chronic fatigue syndrome (CFS), fibromyalgia and Severe Complex Sleep Apnea (both obstructive and central) which has come in recent months. The central sleep apnea aspect is where the brain does not relay to your heart and lungs the proper signals for breathing. The result is awakening as it a plastic bag has been placed over your head.
Before these disorders I was involved in weight training and other outdoor activities. I am 6.3 and weigh over 250 pounds and was bench pressing over 300, was active in many other areas when the diseases hit. They say Fibro and CFS are more common in women that men. My stepbrother has very bad fibromyalgia and takes frequent naps and rests during the day when he can as he is self employed and co-owner of a decent size drywall company.
Often the pain and fatigue is unreal. I have been treated at the University of Miami School of medicine by some of the leading research doctors over the last several years. I underwent several sleep tests and they discovered that I cannot use a CPAP due to central sleep apena so I was given a VPAP. The insurance company approved of it as I was having over 37 sleep incidents per hours and severe is considered 20 and up. I thank God that I work for Miami-Dade County Public Schools and their insurance policy they carry for the 37,000 employees pays for most of what I have to be treated for and it is open access where I do not have to get a referral from some insurance controlled doctor who is told to keep costs down by an insurance company stooge. My prayers go out for those with inadequate insurance or no insurance. If I had no insurance it would have cost me in theme about $ 40,000. I have had to pay several thousand out of my pocket Still I feel lucky.
Unfortunately, the VPAP (higher caliber more advanced machine that CAPA) has so far had little effect on me awaking in the middle of the night as if a plastic bag had been put over my head. I often sleep only 2-3 hours per night and it is taking a toll on me.
This combined with bad CFS (I have the B-19 parvo type) and fibromyalgia often make getting by each day a real chore.
I have several years to go to retire but then I will have to wait until age 65 to get Medicare as to carry the policy upon retiring is over $600 per month if they will have me.
I will pray for all of you and your families,
Randy
Go to this link just below. At the bottom of the page there are black colored tabs that go from page 1-10. Some are just writing and some have video. You can ask questions in a box and send it in to the attorneys.
http://www.diattorney.com/category/frequently-asked-questions/
Why is ERISA an unfair law for disability insurance claimants?
http://www.diattorney.com/is-erisa-a-fair-law-for-disability-claimants/
ERISA stands for the Employer Retirement Income Security Act and it was a Federal law that was passed in the early 1970s which was supposed to make it more affordable for employers to be able to offer long term disability coverage as well as health insurance for employees.
In reality in my personal opinion, what happened is that, a lot of individuals, while they got a low price for this type of coverage, they actually get somewhat screwed in the end with the administrative process. I personally feel that ERISA is an unfair law, it is a pro-insurance company law and it really puts insured’s backs against the wall the time comes to file a claim
I have had fibro since 1988 when I was diagnosed. Presenting with 17 out of the 18 trigger point. I can tell you that protein is essential to feeling better. I have been using a natural Creatine pill found in most health food or fitness places. It is actually used by body builders. When I first starting taking it I felt better than I had in like 20 years. I have used the Flexeril and found it tires me right out the next day. I only use it now when I absolutely have to.
Do the research on the net about it.. It's not expensive and it does work.
I have fibromyalgia, degenerative disc disease and Osteoarthritis.
Fibro can go into remission, as it did for me for about 5 years. Living stress free is important as that seems to be a huge trigger. Outlook is also important. Living in pain constantly isn't pleasant to say the least, ok it totally sucks. However keeping positive, resting when you need to.. and going at a slower pace, all help to making you feel better.
I personally believe that it is neurological as well. Something in the brain must have turned on these pain receptors.
How in the world can a physician who has not seen you in over two years respond to a form inquiring as to your present disabling conditions?
As for the denials, no one should have to resort to hiring an attorney to fight the denial thus pulling even more funds from your potential disability, if and only if, you ever qualify. This is now general practice once you are denied that your next step if to find an attorney who will work for you based on having success with your case. I am grateful for the attorney/firm who took my case but am still not comfortable that the case will succeed.
This is a horrible way to live and I have lost everything that I have waiting for the disability.
It is a disgrace that this country has come to this, specifically the state of Virginia.
I think the mindset is that if they wait long enough the people will not be able to survive and will have to work thus eliminating them from qualifying.
Also, the doctor's that the disability program sends you to for exams are nothing more than a complete joke. I went to one and she was a complete joke and told me she already knew me and did not need to see me more than 5 minutes which she did. They only way she knew me was from what I had filled in on the disabilitly report! I was furious and of course, was denied. I had not been able to go to a physicial for over two years so there were no records due to no insurance coverage. Wake up disability offices and help people who need it instead of spending all of your time denying them!!!!!
As for meds to help with the pain not much really helps, but i found that muscle relaxer (Flexeril) helped more than any pain killer, although it also makes me sleep too much, so i only take it when the pain is terrible and i can't stand it anymore or at night so i don't wind up sleeping all day. The depression is also a huge problem, but i deal with it like i do everything else, one moment / one day at a time. I've learned with experience that i can't take any type of pills for depression / nerves, since it makes me severely depressed instead of helping me feel better.
There is more i could say i guess but i don't need to write a book on here, lol.
Then I was diagnosed with Polymalgia Rheumatica when my pain was way past 10,this was worse, I had PMR for 2 years thank God,I do meditation, self hipnosis, I am a breast cancer survivor and work.
It is hard, but I do not want to be a victim.
program to stop the volence.I have seven kids my yougest daugter is a junior and my baby boy in the 7th grade. i stay tried alot i have 4 grand baby and one on the way.since 2007 my life changed i used to be able to keep up with them and now i really can't. its depressing sometimes .when the weather changest dump,rain,cold and misted i feel grave emotion ; physcal pain.Sometimes spiritually bankrupted. then i start my day over and go on hoping for the best.i was denided social secruity twice. my husband has sickie cell.he just keeps on going i find my strenth in him.God bless you all with
the love of jesus christ.
Good luck to you all out there ....and keep the faith!
Doesn't anybody out there have Chronic Fatigue... I have both, but Lyrica has nearly eliminated the pain and flu-like symptoms.
Now I am nearly non-functional with FATIGUE.
Any ideas/suggestions?
I cannot find a support group in Maryland.
Since my condition was deteriorating rapidly I was advised by my doctor that I should not live alone any longer. My daughter and her family moved into my house and we built a small mother in law's cottage in the backyard. It is so great having my daughter so close and yet still maintain my own home and privacy.
One day while lying in my bed thinking of my future I decided my future was really in my own hands. I forced myself out of the bed and decided that I would put quality of life back into my life regardless of the pain. I read everything I could find on fibromyalgia and learned that the best thing is to keep moving. I bought a treadmill and started walking on it -- very slowly at first and not for very long. Then I got an eliptical. I bought a few more pieces of used equipment and set up a circuit training area with them. I used each piece of equipment for just a few minutes and then went on to the next. A year later and I walk outside - 2 miles per day. I have joined a group of bicycle riders and have completed the 16 mile course in a neighboring city. Yes, my pain continues but is more bearable through getting plenty of exercise. On bad days - I just relax and enjoy my beautiful backyard which is another thing I forced myself to do. I just could not see myself confined to a bed for the rest of my life. I'm very stubborn and when I set my mind to something - I do it. Yes, I suffer greatly from some of the things I do and overdo. But - I have a life again.
I would be happy to talk with anyone about this horrid condition and how I live with it. Email me at sharongrimes1736@gmail.com
PLEASE FEEL FREE TO EMAIL ME IF YOU NEED SOMEONE TO CHAT WITH. MY NAME IS TIFFANY :)
EMAIL: epiphany888@yahoo.com
I just started Lyrica, Flexeril, and am using Voltaren Gel. These new meds seem to be helping but I am so dizzy I cannot drive. I guess it will go away in time.
Love to all, stay strong,
Frances
Anyway, life is one day at a time & very difficult to make any plans. Each day I am different. I still have hope and know that I have a future though it has changed greatly.
My family and friends give me the most support they can. But it is my life to be lived which is challenging. I try not to whine nor complain...no easy order with chronic pain, chronic fatigue, and chronic diseases/disorders. Yet, my life has taught me great compassion and a listening ear.
been most helpful in my depression, since you
can't see it (fibromyalgia), many do not believe it is real. It's newness to the community offer some kind words with the Lyrica commerials. I fought hard to get my
insurance company to aprove Lyrica and -- it
did not work. Thank God for Cymbalta. With
depression since 1984, I thought it might help. My primary care said no! I've learned that where there is a NO! There's a YES around the corner. Fight for your medical
rights and needs. Don't give up. Have FAITH!
POOL EXERCISE AND JOINING CURVES HAS HELP ME,MY DOCTOR RECOMMENED IT AND SHE ALSO GAVE ME ULTRACET FOR PAIN, WHICH HELPS . PEOPLE DO NOT UNDERSTAND FIBRO.,ONLY US SUFFERS KNOW HOW DEBILATATING THIS DISEASE IS. I WISH THEY COULD FIND A CURE FOR IT SOON. LATELY I AM SUFFERING FROM FIBRO FOG,I ALSO HAVE TROUBLE CONCENTRATING AND LOSS MY THOUGHT IN A MIDDLE OF A CONVERSATION.
'
ARLENE J. MOSAKOWSKI
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