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About Candy
Expertise
I was diagnosed (finally) with CFIDS (Chronic Fatigue Immune Disfunction Syndrome) in 1993. I am currently in "remission" (for whatever that`s worth). I have experienced the full range of emotions that go along with this disease and will be glad to "listen" to anyone who needs to vent their fears, confusion, frustrations, anger...(it helps). I can share what worked for me and what others have shared that worked for them. I can steer you in directions of help (ie: Social Security Disability claims, natural remedies, support groups, etc.). You are not alone.

Experience
Since my diagnosis, I have done a lot of research on the illness. I started the first support group in my area and organized "training" for physicians, nurses and care givers who believed in this disease and wanted to treat their patients that suffered . (It helped that I had been a Paramedic for 10 years before getting sick and had some medical knowledge.)

Organizations
National CFIDS Association, American Association of Emergency Medical Technicians and Paramedics

Education/Credentials
Emergency Medical Technician II, Emergency Intensive Care Paramedic

You are here: Experts > Health/Fitness > Chronic Fatigue Syndrome/Fibromyalgia > Chronic Fatigue Syndrome > CFS but maybe not

Chronic Fatigue Syndrome - CFS but maybe not

Expert: Candy - 10/15/2009

Question
Dear, Candy,

Forgive me if this entry is long, but this is my story. I'm a 23 year old male and all my problems started after final exams week from an extremely stressful college semester around 3 years ago. Around a month or 2 before the problems started, I had to go to ER and discovered I had an ear infection and bronchitis. I took antibiotics, but I can't remember for what (most likely for the ear infection). Anyway, after I finished my finals, I went on a trip to Hawai'i, but I was disappointed that all I felt like doing was sleeping. As time passed, I started to get these symptoms: shortness of breath, tingling in the hands and feet, dry eyes, sleepiness, thirst, body stiffness, and probably a few more I forgot about. I thought the symptoms would go away with rest, but they didn't. Realizing something was definitely wrong, I went to my previous doctor in 2008. I was sent to a neurologist and was told nothing was wrong. My previous doctor couldn't find anything wrong with me and thought I had depression or could have, interestingly, CFS. I thought depression was baloney, but decided to give the antidepressant, Celexa, a try. No change. I decided to give acupuncture a try. After 8 treatments and no improvements, I got lost for a long time and searched for answers. Finally, I read about a specialist in nutritional medicine named Dr. Lam who was an expert on adrenal fatigue. Through phone consultations, he told me I had 2nd stage adrenal fatigue and his assistant recommended I take liposomal vitamin C, pantethenine, and a powdered form of a vitamin C blend. I faithfully followed the program for a month and most of my symptoms went away! I was very happy and took the supplements for another 2 months for my remaining symptoms (fatigue and muscle stiffness), but they didn't go away. His assistant told me to increase the liposomal vitamin C dosage and take supplements such as glutathione and hydrolyzed collagen. Sadly, there were no improvements and it's been around 3 months since I've been off of the plan due to financial restraints. Now I'm seeing a new physician in the hopes that he can help me. I have mixed feelings about him though. I'm glad that he recognized my problem was stress related and told me that the white sticky slimy substance (which my previous doctor and dentist thought was from certain brands of toothpaste) I woke up with everyday in my mouth was mucus and I had post nasal drip. However, he found nothing physically wrong with me according to my recent blood test (unsurprisingly) and recommended I get stress counseling. The counseling is good, but doesn't help with my symptoms. Cyclobenzaprine and acupuncture has helped my muscle stiffness and sleep.

My question is what else can you suggest I do or any comments? I plan to see my physician again, but I have so many questions that can't be answered in one sitting. One of the questions I want to ask him though is there anything that he may have overlooked? I've learned that many people with CFS/fibromyalgia have EBV, but some have other infections from the herpes family.

Answer
First I am going to give you a list of Natural Remedies that have helped me.

Vitamins and Minerals Maximum Daily Dose

Malic acid/Magnesium hydroxide 1,800-6,000 mg (take in 6 small doses)
Beta carotene (pro vitamin A) 10,000 I.U.
Vitamin B complex
B1 (thiamine) 50 mg
B2 (riboflavin) 75 mg
B3 (niacin amide) 200 mg
B5 (pantothenic acid) 200 mg
B6 (pyridoxine) 75 mg
B12 (cyanocobalamin) 100 mcg
Folic acid 400 mcg
Biotin 400 mcg
Choline 700 mg
Inositol 500 mg
PABA (para-aminobenzoic acid) 50 mg
Vitamin C 2000 mg
Vitamin D 200 I.U.
Vitamin E 400 I.U.
Calcium aspartate 1200 mg
Magnesium aspartate 600 mg
Potassium aspartate 200 mg
Iron 18 mg
Chromium 150 mcg
Manganese 20 mg
Selenium 50 mcg
Zinc 15 mg
Copper 2 mg
Iodine 150 mcg

Dosage: Take one-quarter to full amount of the above nutrients on a daily basis. Begin this formula with the lowest dose of each nutrient and increase the dose slowly and gradually to the recommended maximum depending on how you are feeling.

yourbal Tinctures Maximum Daily Dose
Ginkgo biloba 2 droppers full
Ginger root 2 droppers full
Burdock root 2 droppers full
Dandelion root 2 droppers full
Licorice root 1/2 dropper full

Dosage: Take one-quarter to full amount of the above nutrients on a daily basis. Begin this formula with the lowest dose of each nutrient and increase the dose slowly and gradually to the recommended maximum depending on how you are feeling.

Food Sources of Vitamin A

Vegetables
Carrots
Carrot juice
Collard greens
Dandelion greens
Green onion
Kale
Parsley
Spinach

While debilitating fatigue is the hallmark of chronic fatigue syndrome (CFIDS), a feeling of weariness is not, by itself, a sure sign of this illness. People with CFIDS have a combination of symptoms, including swollen glands, muscle pain, and confusion. The symptoms may come and go, vary in intensity from mild to incapacitating, and last for months or years. Exercise often makes CFIDS worse.

People with CFIDS describe it as feeling like a terrible case of flu that never gets better. A typical victim, previously well and active, suddenly comes down with a flu-like condition. Then, instead of getting better, she develops a chronic illness that includes a severe, prolonged fatigue.

CFIDS is not well understood: Although it does not appear to be new, it was only officially described by the Centers for Disease Control and Prevention in 1988. Research into its causes and treatments is just beginning and no clear answers have emerged. The condition goes by several names: You may hear it called chronic fatigue immune dysfunction syndrome (CFIDS), chronic Epstein-Barr, or myalgic encephalomyelitis. Most disturbingly, you may still find doctors who do not believe the syndrome exists, or doctors who believe CFIDS patients are actually suffering from depression, or even faking it.

It is not even certain how many people have the illness, although new studies put the estimate at more than 500,000 Americans. Most people diagnosed with CFIDS are young adult women, but the condition occurs in people of all ages and races and of both sexes. CFIDS is not contagious.
Causes of CFIDS

Current thinking is that CFIDS probably has more than one cause; research generally falls into three areas: the nervous system, immune dysfunction or a viral cause. Experts pursuing the viral theory say it is not clear whether there are several viruses that each happen to cause the same syndrome, or whether the disease results from a combination of viruses working together. Some research shows that people with CFIDS may have an abnormal response to viruses in general. Some viruses, such as Epstein-Barr and human herpes virus 6, have been considered as possible causes, but there is no conclusive evidence for any single virus.

Recent research into the immune dysfunction theory has found that cytokines, an immune system component normally active in fighting infections, may be involved in CFIDS.

Two other areas under investigation are a link between CFIDS and allergies and the relationship of CFIDS to inflammation of the central nervous system.

Studies are now finding that some people who fit the strict criteria for chronic fatigue syndrome may also have a condition known as neurally mediated hypotension (NMH). Such people experience a dramatic drop in blood pressure after as little as 10 minutes on their feet, and suffer many of the symptoms of chronic fatigue. Treatment for NMH has yielded an improvement in CFIDS symptoms in at least one study. Researchers think that a virus or infection may cause the injury to the central nervous system that's responsible for this disorder—which may explain why so many patients report a viral infection before developing CFIDS.

Diagnosing CFIDS

Since there is no one conclusive lab test for CFIDS, diagnosing the syndrome means ruling out all the things it isn't —a very difficult task. For example, CFIDS shares symptoms with medical disorders such as lupus, multiple sclerosis, and Lyme disease, as well as with depression, so these conditions must all be ruled out before CFIDS can be seriously considered.

To be diagnosed with CFIDS, a patient must, for at least six months, meet two major criteria and have four or more of a group of symptoms commonly associated with the disease.

The two major criteria are:

   * New onset of persistent fatigue that reduces activity 50 percent, and does not get better with bed rest

   * Fatigue not explained by other medical or psychiatric illness

   *Test positive for the Epstein Barr Virus

Potential symptoms include:

   * Sore throat

   * Painful lymph nodes

   * General muscle pain

   * Prolonged fatigue after physical activity

   * Generalized headaches

   * Pain that moves from one joint to another without swelling or redness

   * Forgetfulness, excessive irritability, confusion, or inability to concentrate

   * Sleep disturbance

Treatments for CFIDS

There is no proven cure for CFIDS. Treatments in current use only help relieve symptoms. Most doctors recommend improving general health and physical condition. If you have CFIDS, you should eat a balanced diet, get adequate rest, and exercise as much as your condition allows—walking is most frequently recommended.

You must also learn to set limits and pace yourself, since stress can often make the symptoms worse. For many people, lifestyle changes may be necessary. For example, you may need to take a job closer to home, or switch to a less stressful occupation. Many people with CFIDS cannot work full time while they are ill.

Pain management programs may help with severe muscle pain or headache, while sleep disorders can often be treated at a specialized sleep disorder center; relaxation training may help reduce stress; some alternative therapies, such as acupuncture, aquatic therapy, chiropractic, massage, and yoga, have helped some patients. Support groups and counseling may also be helpful, while certain psychotherapies, such as cognitive behavior therapy, have helped some patients cope.

Drug Treatment for CFIDS has met with mixed results. There are reports of success in treating symptoms of CFIDS with a number of products, including antiviral drugs, antidepressants, anti allergy treatments, blood pressure medications, and medications that boost the immune system. But few drugs for CFIDS have gone through formal clinical testing, and none have shown clear benefits. Recent tests of antiviral agents such as acyclovir (Zovirax), and immunoglobulin (Gamimune, Gammagard, others) have been inconclusive, working no better than dummy pills in some tests.

Some doctors use pain relievers, non-steroidal anti-inflammatory drugs, the newer prescription medications called COX-2 inhibitors (Bextra, Celebrex), and injections of gamma globulin (Gammar), vitamin B12 and magnesium for relief of general symptoms.

Support Groups

Because chronic fatigue syndrome is not well understood, you may want to be in touch with the national organizations that offer the latest information on the illness. There are also patient organizations that can help you find a support group. Many people with CFIDS find these groups helpful in dealing with the effects of the disease on their lives. For information, check the Directory of Support Groups.

Outlook

The good news is that CFIDS does not seem to get worse over time. Often the first episode is the worst, with relapses becoming fewer and milder over time. Typically, symptoms come and go, and worsening symptoms are rare. Some physicians have observed that patients whose symptoms began abruptly following a severe viral illness tend to recover completely after six months to a year, while patients whose problems developed slowly are likely to experience symptoms for a longer period of time.

However long it takes, people with CFIDS generally do tend to improve, even if they do not recover completely. Most people with CFIDS make significant changes in their lifestyles while they have the disease, and learn to accept new limits. Some people recover spontaneously in a few weeks or months.

Applying for Social Security Disability based on CFIDS or Fibromyalgia alone can be an ordeal in itself. Because our wonderful government has dipped into the Social Security budget to fund other things, the Social Security Administration needs time to stall so they can dip into another budget for the funds owed the "appee". So they deny applications for, what they call, "questionable" disabilities. (The only automatic awarded disabilities are quadriplegia and total blindness.) The denial process entails 3 phases. When the first one is received (via letter) it can be appealed by simply returning a form enclosed with the denial letter. At that point SSD will make you an appointment to see one of their doctors. Then, in most cases, you'll get a letter stating you've still been denied. To appeal this denial you'll need to go to court. This hearing will be in front of a court commissioner (maybe a judge) in a local court. As a rule, the claims get accepted at that point, providing your case is strong. But if this "judge" denies you, you'll have to go before a Supreme Court judge. This is the last and final ruling. Once denied in this court, you're done. You can't appeal it. Most people don't make it that far. They give up and try to go back to work (which is what SSD is counting on). In my own case, I had to go to the first court hearing before getting my claim approved which took a year and a half from the date I first filed. That's a year and a half with no income and plenty of stress, which aggravates the CFIDS symptoms. My suggestion is, if you think you can endure the process (and all the stresses and frustrations), #1 - start a diary/journal describing each day, your activities, your symptoms, etc. and keep it current until the check is in your hand, #2 - find a doctor that will run the EBV test and give a clear and concise diagnosis and who is willing to help supply whatever it takes to convince Social Security, #3 - At the first denial, find an attorney who specializes in Social Security Disability cases (they work on a contingency basis. They don't get paid unless you get approved and they are only allowed to charge 25% of your award). You probably won't need them for the first appeal because that one's on paper, but do not go to court alone. You will lose. Also, check with the state you live in to see if it provides a State Supplemental Income. Most states have what they call a "poverty level" base line (the amount of income that makes you eligible for public assistance.) If the amount of your Social Security doesn't meet that base line amount, some states will supplement the balance so you don't have to go on their welfare roles. Here is a website that may have more definitive answers for you regarding disability.

www.mcsinfo.homestead.com/files/SSDIArticle01Web.htm

www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1.1_Living_With_HepatitisC/Fibro_CFIDS.pdf

www.masscfids.org/publications/disability_handbook/MassCFIDS-FM_Disability_Handbook_12-40.pdf

www.disabilityassistance.com/social_security_disability.html
members.tripod.com/bh.cfs-fms/Links_at_Top/DisabilityInfo/Disability_information.htm

members.tripod.com/bh.cfs-fms/Links_at_Top/DisabilityInfo/How_to_Apply_for_SS_Disability_Insurance_benefits_if_you_have_FMS.htm

www.disabilitysecrets.com/

www.immunesupport.com/articles/articles.cfm?disease=Fibromyalgia

pbcers.org/ssd.htm

pbcers.org/SSD-ALL.htm

www.disabilitydoc.com/chronic-fatigue-syndrome-and-d/

www.myida.org/dislinks.htm

Here are some links where you can get support and other info.
www.cfids.org

www.ncf-net.org

www.cfidsselfhelp.org

wwcoco.com/cfids/forms.html

www.cfidsers.org

www.supportalk.com/detail-1244625.html

virtualhometown.com/dfwcfids/doctor.html

www.cdc.gov/ncidod/diseases/cfs/support/supus.htm

www.healingwell.com/pages/Chronic_Fatigue_Syndrome/Organizations

I hope this has been some help. Just remember....this is a REAL disease...no matter what anyone might say to you. And that you are not alone. Find a support group in your area (or do like I did and start one) because having someone to share with that understands what you are going through helps...it really does. I wish you the best of luck and if I can be of any further assistance please ask.

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