Helpful Things I Use

A list of Dom's Meds, Supplements and Lifestyle Helps

My heart goes out in sympathy to those who are suffering from FMS/CFIDS, because I too had severe pain, insomnia, depression and debilitating fatigue since the onset of this illness in June 1982. I am now living a fairly normal life, but it took years of misery and suffering - and much trial and error - to discover things that helped me. Each of us is different, but I think that my list below will be helpful to others.

Those of us who are afflicted with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) - also known as Myalgic Encephalomyelitis (M.E.) - need various medications and supplements to help manage the many problems this illness creates. Presently there is no "cure" because the "cause" is not yet known, but below are some things that have helped me with the insomnia, muscle and soft tissue pain, depression, fatigue, exhaustion, cognitive problems, fibro fog, frequent viral illnesses, etc. www.fms-help.com/signs.htm.

My fibromyalgia began in June of 1982 www.fms-help.com/fibro.htm when I was 30. My CFIDS began 5 years later www.fms-help.com/fatigue.htm. However, my insomnia began at age 16 www.fms-help.com/insomnia.htm.

PLEASE NOTE that a particular drug or supplement that works for one person with FMS/CFIDS/ME may not necessarily work for another. To complicate matters....what works for us for awhile may stop working later! Yes, it's frustrating!! There is no magic "one-size-fits-all" bullet. We have to keep trying new things and new approaches, hoping to stumble upon something that helps us individually. They don't call this "Millionaire's Disease" for nothing! It's very costly to have to keep trying new things, and terribly hard on those of us who have had a "cash-ectomy" (removal of cash from our wallets) and a "job-ectomy"(removal of our jobs) due to chronic illness!

Regarding medications, do your research online and ask your doctor about various ones that may possibly help you. Don't get a full supply, since you may take just one pill and decide that the drug has bad side effects for you. Also, I have found it best to take just a tiny amount of any drug to first see what effect it has before proceeding with the prescribed amount. (I could tell you some hair-raising stories about dangerous and frightening drug side effects I've experienced!!! For instance, see www.fms-help.com/sleep.htm).

I am not a doctor, just a patient (read: "guinea pig") with FMS/CFIDS. When looking for supplements, it's helpful to try ones with a refund guarantee, which enables you to have money for your next "experiment," if you don't get results. Until a "cure" is found, we are kind of on our own in discovering things that help us manage our symptoms. It is even possible that FMS/CFIDS is caused by a retrovirus that enters our DNA and changes it!

Below are 2 lists that I hope will help other sufferers--

1. THINGS THAT HELPED ME

2. PAIN RELIEF SUGGESTIONS

Please write dombush@bellsouth.net if you have questions about any of the items on my lists below.

Dominie Bush

www.fms-help.com

1. THINGS THAT HELPED ME

Although I'll never be Hercules, I'm glad to be able to keep up with my work and responsibilities. Here's what I have used to help my fibro fog, sleep disorder and fatigue. Some of these I use daily - some only as needed. Thankfully, I have been 95% pain free for many years now. Different things work for different people.

1. Ambien - For sleep. I take half of a 10 mg Ambien tablet (generic is called Zolpidem and is MUCH cheaper - works the same, at least for me.) Then in the middle of the night I take the other half of the Zolpidem tablet plus 1 mg of Lorazepam (generic ativan, an anti-anxiety medication). Now here's something really strange - before I began using the immune balancing powder (see below), there were NO sleep meds, including Ativan or Ambien that worked for me after I turned 47 and went through hormonal changes. I think the immune powder enabled my immune system to function more normally, so that the meds could work. (For insomnia sufferers, I made a complete list of things I tried for sleep and how they worked for me - see www.fms-help.com/sleep.htm.) By the way, I tried Ambien CR because I had a free 7 day coupon, but it did not work well for me at all - I felt terrible the next day - the drug probably lingered in my system too long. Everyone is different though.

2. Oxygen Drops - This has been the most effective thing I've found for reducing brain fog, increasing stamina, and lowering the frequency of viral illnesses. These drops oxygenate the body and brain and alkalize the pH. Acid causes disease and makes pain worse. I put these drops in drinking water. It adds oxygen to my system and helps raise my pH to be more healthily alkaline. You can try to stay more alkaline through diet, but it is nearly impossible, even with a vegan diet. A reader told me about these drops in August 2009 when I was looking for help for cold sores. They have proven to be incredibly helpful for preventing "fibro crashes" and "brain fog." I have always felt like I was not getting enough oxygen to my brain. My husband said he thought I needed to be on oxygen, but my doc wouldn't prescribe even a trial use of oxygen since my blood 02 was in the normal range. Interestingly, a reader told me that her doc measured her blood 02 at rest, and then again after climbing a set of stairs. It was dramatically decreased after she climbed the stairs, and he was shocked! Maybe this is why CFIDS patients feel worse after exercise. This awful feeling that my brain or heart was dying or being crushed has gone away since using these oxygenating drops in my drinking water.

3. Immune balancing shake - BALANCES immune function and modulates autoimmune responses. The benefits I experienced were: better sleep (with meds), no more racing thoughts, no digestive problems, gas or bloating. Surprisingly, my complexion also cleared up after 50 years! The powder works in the "gut"where 80% of our immune function takes place, surprisingly! It's called the "gut brain." This powder was extremely helpful. I used it daily for 8-1/2 years but stopped to experiment with an immune booster. (I didn't think I should do both at the same time.) However, I may go back to the immune balancer. It's really hard to tell whether we with FMS/CFIDS need immune BOOSTING or BALANCING, a topic in some of my past newsletters www.fms-help.com/newsletters.htm. You can also take 1-2 capsules of a special compound along with the immune balancing shake that relieves pain and inflammation. This combo helped me stay pain free for years. Write dombush@bellsouth.net if you have questions. It is recommended to not use any herbal (plant-based) supplements during the first 30 days on the immune powder. It has a 90 day money back guarantee.

4. DNA Immune - This product BOOSTS the immune system and protects DNA. In my newsletters www.fms-help.com/newsletters.htm, there has been discussion as to whether people with FMS/CFIDS needs immune BOOSTERS or immune BALANCERS! Good question! The general agreement is that sometimes we need immune BALANCING, but other times we need immune BOOSTING. It's complicated, I know! Best thing to do is try one way, then the other. (As mentioned, we are "guinea pigs" with this illness. Doctors don't have any answers for us yet.)

5. Essential oils - Certain therapeutic grade essential oils help me with relaxation, fighting infection and general well-being. Essential oils do not feel oily. They are highly concentrated liquids distilled from plants. They can be used topically or by inhaling their fragrance. Essential oils have electrical frequencies which affect the limbic portion of the brain. I discovered (much to my surprise) that one of these oils relieves my feelings of "fibro fog" and severe exhaustion. A few drops of the oil goes a long way. I recently read in a magazine about a young man who survived being shot many times during the Columbine High School massacre several years ago......now that's STRESS!!!!!!! He now uses the same essential oils that I do!!! I continue to learn about and experiment with the oils daily. Some help with sleep, infection, skin, mental fog, etc. Many have powerful anti-viral and anti-fungal properties. Be sure to get theraputic grade essential oils from a reputable company and not merely "recreational fragrances." Visit www.fms-help.com/oilsstore.htm for a list of the ones I use and love!

6. Colloidal silver - natural antibiotic - can be used in many ways and it has helped me avoid trips to the doctor for all kinds of infections. At times it has worked better for me than antibiotics, from which I usually have bad side effects. If I feel a cold or sore throat coming on, I spray colloidal silver up my nose and on the back of my throat. It can also be taken orally to kill viruses and bacteria, or put into a douche to help yeast infections. CAUTION: Be careful which brand of colloidal silver you choose, because some can be harmful while others are not effective. I can send you info about the colloidal silver I use. Write dombush@bellsouth.net. Actually, I developed CFIDS in 1987 www.fms-help.com/fatigue.htm after a terrible respiratory virus and being treated by the docs with 6 broad-spectrum antibiotics, one after the other. I think this wrecked what was left of my fragile immune system.

7. Generic Nyquil (at bedtime) or generic Dayquil (for daytime) - If I feel like II might be catching a cold, I don't mess around! I am a piano teacher and sit next to sick children frequently on a piano bench in a small room where germs and bacteria are abundant at times. I don't get any sick leave, so I have to stay well or don't get paid! I found that if I immediately take either 1 tablespoon of Nyquil or Dayquil, that it often stops the development of a cold in its tracks. Sometimes I use generic Actifed at night instead of the generic Nyquil. (Why generic? It's cheaper at Wal-Mart and just as effective.) If I can stop a sinus problem before it gets a foothold, it usually goes away. I don't wait anymore until symptoms are raging, because then I could be down for weeks. A friend told me that 3g of Vitamin C helps stop cold symptoms, and I have found that to be true also. It helps me when I feel run down. I also spray colloidal silver in my nose and throat, as mentioned above. It's a lot easier to stay well than to try to crawl back up the cliff once you've fallen off! I also find that if my nose is a little drippy, taking 1 tablespoon of Nyquil at bedtime helps me sleep as well as stops the annoying dripping. (For the past 2 years, I used Zicam nasal swabs or spray at the first sign of a cold to keep me from catching it, but in the news today, June 16, 2009, there are reports of people permanently losing their sense of smell and taste from using Zicam, so it is being removed from the market.)

8. Cold sores - Due to poor immune function and poor sleep for decades, I have battled chronic, large, recurrent cold sores on my face....aarrgh!!! The good news is that I have finally found things that stop this extremely annoying problem. Please visit my cold sore page for more information.

9. Hearos foam ear plugs - the soft small beige ones from Wal-Mart are the absolute best I've found to block out noises comfortably while I sleep.

10. Sleep mask - I use a black sleep mask to block out light. $2.97 at Wal-Mart. Wearing the mask keeps me from having to put depressing dark shades over the windows, which my husband hates. (When I first started wearing the mask years ago he said he felt like he was sleeping with the Lone Ranger......ha!)

11. Cold packs - I put these behind my neck or on my forehead at night to help slow my thoughts down, and they also feel good if you have hot flashes and live in a miserably hot, humid climate like I do in Florida. You can get these cold packs at Wal-Mart or any drug store. I keep mine in the freezer. Be sure that you don't freeze your skin though! I like the cold packs that feel like cloth on the outside, because they don't stick to your skin. Another great product I found is the Chillow -- a soft plastic mat the size of a pillow that you fill with water, and it stays cool all the time. You can find it at Walgreens drugstore for $19.95. Mine sprung a leak, but the company promptly replaced it with a sturdier version. However, be careful how you store a Chillow so it doesn't get moldy. It must be kept wrapped in a towel.

12. Dark sunglasses - I have to wear dark wrap-around sunglasses when riding in the car or driving to avoid extreme brain tiredness / brain crashing from seeing all the images coming at me so quickly. It was especially bad on sunny days, when the sun made patterns on the road from the trees. I often put my seat back while my husband drives. I can't travel more than about 1-1/2 hours from home due to the neurological damage I sustained from working for a year in a mold-filled building in 2004-2005 - see www.fms-help.com/mold.htm. The constant shifting around in the car as you travel somehow wears out my brain. Also, see Yuppie Flu - "Drained by the Brain" at www.fms-help.com/yuppie.htm.

13. Hot flashes - I am 60 now (where has the time gone?!) Neither plant-based or pharmaceutical estrogens help me, so I just lived with the hot flashes. When home, I put a cool pack on my neck from the freezer. It's a cloth thing filled with little beads or beans. Very soothing and relieves the misery quickly.

14. Milk - Although I am not lactose intolerant, I had to stop drinking milk many years ago. Something about milk creates havoc in my body with allergies, inflammation, etc. I had a complete hysterectomy at age 34 due to endometriosis, which went undiagnosed for over 15 years, despite consulting many doctors. I have heard that stopping intake of sugar and milk can help endometriosis. (This unfortunate condition is often seen in women with fibromyalgia.) I use Rice Dream ORIGINAL (not flavored) RICE MILK for cereal or for making the immune shake (listed below). Rice Dream Original is available at Wal-Mart, with the cheapest price in town at $1.76 per quart. Other grocery stores in our area and the local health food store charge considerably more - even double for this product! Interestingly, many people find that their allergies improve considerably when they stop drinking milk. Regarding dairy products, I can eat some cheese and even occasional ice cream in small quantities, but for some reason milk does me in.

15. Exercise - I can tell when my body needs exercise. You have to keep your lymphatic system moving! My preferred exercises arewalking and using 3 lb. weights. Of course in the early days of my fibro (1980's) www.fms-help.com/fibro.htm, I was unable to move at all without severe, long-lasting, debilitating pain, so I'm thankful to not have pain anymore. I have been 95% pain free for over 10 years. See mypain suggestions toward the bottom of this page.

16. Lorazepam (generic Ativan) - I take .5 mg (that's 1/2 mg) once in the early afternooon and then 1 mg in the middle of the night when I wake up and can't go back to sleep. Although this is an anti-anxiety medication, it helps me with sleep, maybe because of the "bed dread" I developed from 4 decades of insomnia. Prior to age 47 (big hormone shift), I had used melatonin and herbs successfully for sleep. See my insomnia story at www.fms-help.com/insomnia.htm.

17. Scripture or music tapes help me fall asleep at night. They are so comforting and spiritually uplifting to listen to! I prefer Alexander Scourby reading the King James Version of the Bible. Also, Sounder Sleep CD's help me fall asleep - they are very relaxing and soothing - and sometimes I listen to my very soothing Christmas CD www.fms-help.com/CD.htm.

18. Azo (for yeast) - I try to avoid sugar, but if I do eat a dessert, I take an Azo (for yeast) tablet - it's a homeopathic remedy. I also take an acidophilus (probiotic) capsule and a B-complex tablet to offset the damage. I have that this is easier than coping with a fungal or yeast infection. I also follow this regimen if I have to take antibiotics, which I try to avoid.

19. Seroquel (for sleep) - I had a very good doctor of internal medicine who was compassionate and knowledgeable. He said that if we could solve my sleep disorder (of 40+ years duration) that a lot of my other health problems/complaints (like immune compromise) would go away. I believe that is true, because whenever I get restorative sleep I am functional, but when I don't, I can barely survive the day. Seroquel (12.5 mg) at bedtime (half of the smallest dose tablet) helps my sleep tremendously. I also take 10 mg of Zolpidem (Ambien) - 5 mg at bedtime and 5 mg when I wake up in the middle of the night - at which time I also take 1 mg of Lorazepam (Ativan). Altogether, they help me sleep. Without these meds, I don't sleep at all. I have had insomnia since I was 16. I am now 60. My sleep problem has gotten more resistant as I have gotten older, so I am thankful for the meds. I feel "normal" the next day when I can sleep restoratively at night and have much less trouble with viruses. (But, sadly, gone are the days of childhood, when I could sleep naturally.) It's taken SO many years of my adulthood to find the right sleep combo for me. I am very thankful to my good doctors for their help and suggestions. My insomnia story is at www.fms-help.com/insomnia.htm. I just wish there were just one SURE remedy that helped ALL of us who suffer from sleep disorders. It can be terribly disabling. By the way, Seroquel in much higher doses (such as 300 mg) is used to treat bipolar (manic depression) and schizophrenia. I have relatives with schizophrenia and OCD, and used to be somewhat OCD myself, so maybe something genetic is going on here....who knows? (At least we don't have FFI....Fatal Familial Insomnia....shudder!)

20. Avoid mold - 25% of the population is very adversely affected by mold. I live in Florida where it is extremely humid. I worked in a moldy building in 2005 and became very, very sick! See www.fms-help.com/mold.htm. I have not fully gained my health back completely, although I am much better. It is now 2011. Mold can be devastating, so beware of "sick buildings!" They can be your home, place of employment, a library, courthouse, etc. In my case, I was working in a hurricane damaged building that had not been remedied. This is my 4th negative experience with mold in my life! The other three were: 2 former dwellings (an apartment and a mobile home) and a place of employment many years ago where I sat beside a mold-filled air conditioning return duct. All the meds and supplements in the world won't help if your system is being pulled down by mold in your environment if you are sensitive to it. For me, I become virtually disabled - like having a constant flu and I can barely move, the fatigue is so severe. Do a google search for mold or "sick buildings" and you will learn more. In the damp climate where I live, we have to keep the air conditioning system clean and running all the time to avoid mold forming in the house. If you are a victim of mold, see Dr. Shoemaker's site www.survivingmold.com.

21. Pill splitter - This is a handy, cheap gadget you can buy at Wal-Mart or any pharmacy. I use it to divide dosages of tablets. One of the main things I learned since being diagnosed with FMS in 1982 is to use the LOWEST dose possible of any med to achieve positive results and avoid negative side effects. Any time I am prescribed a new med, I try just a tiny bit to see how my system will react. I have had some horrible experiences in years past with drug reactions, so this is a precaution I take.

22. Somnapure - My doc suggested that I try a melatonin supplement again, in addition to my sleep meds. I have been experimenting with Somnapure for about a month now, and it helps me relax and sleep better. It contains melatonin and herbs - rather similar to a formula that worked well for me 20 years ago, but then they stopped making it. I would much rather use natural things than drugs, when at all possible.

23. Fish oil capsules - I began taking fish oil capsules (omega 3 fatty acids) for depression upon the advice of my sister-in-law (Ph.D. in virology). I was then able to stop taking Lexapro (antidepressant), except very occasionally. I'm not sure the Omega 3 fish oil was the total answer to my depression, because around the same time, I experienced an emotional healing, but I think Omega 3's help. The sad feelings come back if I let down my guard and don't take the Omega 3's for a few days. Be careful on the brand of fish oil you use - some can be rancid and cause more problems. Write me at dombush@bellsouth.net for some potent brand names.

2. PAIN RELIEF SUGGESTIONS

I have been 95% pain free for many years now, after 14 years of intense suffering (1982-1996). See my fibro story at www.fms-help.com/fibro.htm. Here are some things that helped me:

1. Powerful antioxidants - write dombush@bellsouth.net for brand - some antioxidants work better than others in healing the body of oxidative damage.

2. Immune shake and inflammation-reducing capsules - for joints and collagen support - these helped me greatly. Write dombush@bellsouth.net for brand and details, or see #3 above.

3. Alkalinity - having a more alkaline pH can help reduce pain. Acid increases pain. There are 2 ways I know of to become less acid: 1) vegetarian diet, which doesn't work for me; or 2) Oxygenating Drops that you put in your drinking water. Also, reduce or eliminate soft drinks and coffee, which are primarily acid.

4. Pacing & switching - Don't sit too long in one position or maintain activities of intense mental concentration without a break. Pace your day and keep switching your activities - mental, physical, etc. I tend to focus too intently on things I am doing.

5. Avoid Stress - I can hear you laughing at this one. Seriously, I have cut down on any forms of stress that work negatively on my mind or body. Some stresses are unavoidable. Others can be relieved by getting a backbone and saying "NO!" to excessive demands and obligations. Family stress is the worst and usually unavoidable. Try to protect yourself in order to maintain your own health. This may involve making changes that are unpleasant for other people. I have noticed a tendency in myself (and most other fibro sufferers) to always pick up the heavy end of the load. I am far more inclined to change myself instead of asking others to accomodate me. This isn't a bad trait (trying to get along with people) but it can become stressful when it puts undue pressure on my time or physical resources. By the way, reducing stress is the first of my 100 Tips for Coping with Fibromyalgia & Insomnia at www.fms-help.com/tips.htm.

6. Magnesium - Taking magnesium helped my muscle stiffness and pain during my worst fibro years. When muscle "gelling" was at its worst, I would take up to 6 magnesium tablets per day. The worse "side effect" that can happen is to have loose bowels, although some people with chronic constipation appreciate this "side effect." Magnesium draws water into the colon. If this is a problem, cut back the amount of magnesium you take, or take it only with meals. Most people with FMS are deficient in magnesium, a mineral. Women are told all the time to take calcium for their bones to avoid osteoporosis, but for people with FMS, magnesium is an extremely important mineral. Magnesium helps muscles relax. Calcium helps muscles contract.

7. Pain relieving ointments - I know of two pain relieving ointments. If you want info on these, please write dombush@bellsouth.net.

8. Avoid aspartame (Nutrasweet) - I stopped using aspartame in my beverages when I learned of the dangers many years ago. I have even heard of people whose "fibro" pain went away when they stopped using aspartame (and MSG in its many forms - you can google this topic.)

9. Avoid sugar and sodas - These cause acid and yeast in the body, which increase FMS pain and other troubles.

10. Soaking in a hot tub of water with epsom salts can help muscle pain.

In conclusion, with FMS/CFIDS/ME there is no one single "MAGIC BULLET." You have to keep looking for things that help. What helps a friend with fibro may not help you and vice versa. Also, strangely, what helped 5 years ago may not be effective for you anymore. It can get really frustrating, but DON'T GIVE UP!!!! I have a relatively functional life again, and thank God for everything I learned online and from my newsletter readers, who send me all kinds of info about managing FMS/CFIDS/ME.

Sadly, doctors are mostly unable to help us with this illness, except to prescribe meds that may or may not work to relieve symptoms. Some drugs have horrrible side effects too - particularly anti-depressants, in my experience.

There is a lot of GREAT INFO on my homepage at www.fms-help.com and in my newsletterswww.fms-help.com/newsletters.htm.

Use the SEARCH BOX toward the end of this page to find specific topics (it will search my entire site and newsletters).

Check out my 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm for more helpful ideas!

Dominie Bush

dombush@bellsouth.net