DOM'S NEWSLETTER

Happy 4th of July!

 A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their families.

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1.  READERS WRITE

 "I got referred to your newsletter through a friend. I was diagnosed with fibromyalgia some 10 years ago and like to find out more and how I can deal with it better then I currently am."

"THANK YOU for all your work, long hours, investigations, research, sharing, coordinating newsletters, late hours and Christian sharing and fellowship to the good of all us fibros and others."

"I was diagnosed with Fibromyalgia about a year ago.  I happened to stumble upon your website, and it is so nice to see someone finally giving great tips www.fms-help.com/tips.htm!"

2.  BRAIN HEALING

From a reader-

"Thanks for the newsletter www.fms-help.com/063010.htm.  Good to hear that another RSD patient is on the road to recovery and in remission.  This is so encouraging!  It takes time for the brain to heal but it can be done!  These pain syndromes all seem to be neurological issues.  If they can figure out how to fix it they will help allot of people.  With God, all things are possible!"

FROM DOM:  See my page about brain-based rehabilitation for fibromyalgia at www.fms-help.com/brainbased.htm.

3.  MERCURY FILLING REMOVAL

Responses to mercury fillings at www.fms-help.com/063010.htm--

Reader 1--

"The problem with getting mercury fillings removed is the modern materials dentists use may also be toxic.  many plastics contain contaminants that are also bad for the body.  it would be important to ask the dentist what materials she/he uses.  also, some dentists may require a patient sign a general waiver notifying of the use of cancer-causing materials."

Reader 2--

"As far as mercury fillings go: it isn't enough to have them removed, you also need to get rid of the mercury that has deposited in your body. I had the mercury poisoning in my body removed by traditional chelation, but now there is still lead and arsenic to take care of. Most people nowadays who have heavy metal poisoning have multiple metal poisoning; especially people with 'bad' intestines, like many who have CFS, are vulnerable to HMP.  Good natural ways of chelation are: chlorella (up to 10 grams a day, to be taken a whole year) and Zeolite (powder). That modified pectin sounds good but I'm sticking to chlorella now, as it is a superfood that has many beneficial effects, apart from the fact that it removes heavy metal from the body."

4.  LOW DOSE NALTREXONE (LDN)

Reader 1--

"I'm seeing a doctor that told me that he is finally getting his life back from having severe fibro. Check out his website; his book (Health First) has so much wonderful information. I have just started his protocol. Low dose naltexone is the only presciption drug he uses. www.FDNHhealth.com and www.soundsidehealthcare.com."

Reader 2--

"I have been feeling about 50% better the past six months - since I started taking the low dose naltrexone."

FROM DOM:  I have reported on LDN (low dose naltrexone) in past newsletters - try a search at www.fms-help.com/newsletters.htm.

5.  BACK TO NATURE 

From a reader--

"I've been searching the plant kingdom for cures religiously for some time now.   lemongrass tea appears to be helping me.  here's some info:   lemongrass is a powerful nitric oxide inhibitor (which we need), anti-inflammatory, and anti-cancer, especially of the digestive tract!  it is anti-microbial, anti-candida.   i mix it with red rose buds.  it's a great combo.  tastes like lipton's tea with lemon. there's lots of good info on www.biomedsearch.com   this is a scientific study site, so hopefully reliable.  i'm not looking at marketing claims but rather supposed unbiased studies.   also, olive leaf tea is fantastic as well:  anti-microbial, anti-candida, lowers cholesterol, is anti-oxidant, anti-inflammation, lowers blood pressure.   i buy the teas in bulk at www.mountainroseherbs.com   another one:  MILK THISTLE.  it builds glutathione in the body, which we desperately need.  you can buy the ground seeds in bulk as well.   another great thing:  SESAME SEEDS AND SESAME SEED OIL.   it has a ton of powerful vitamin E called gamma tocopherol, and also helps our body synthesize vitamin C.  a component called sesamin is anti-cancer, lowers blood pressure and cholesterol, and suppresses NF-kappa B, which we NEED, and also has tons of calcium and reduces body fat.  it's good stuff, but SOME PEOPLE ARE ALLERGIC TO SESAME SEEDS.   i put organic sesame oil on my skin, head to toe.  it's relatively inexpensive compared to skin lotions.  it has a ton of vitamin E, so it's fantastic.  great for a sunburn because it reduces inflammation.  also, it is absorbed into the body through the skin, so putting it on your skin also confers all the same benefits of consuming it.   i make sesame milk in the blender with a bit of stevia.  i don't strain it, but you could.  i did notice a bit of weightloss, a couple of pounds right away.   BUT A REMINDER:  SOME PEOPLE ARE ALLERGIC.   the Lord put the healing in the PLANTS...  i've been going to the farmer's market and buying only organic produce.  it's HALF the cost of conventional and organic produce in the supermarket.  not all growers are certified organic because of the "red tape," but many have organic practices and don't spray.    i'm realizing in my quest for information that much of our illness in this country comes from toxins in our food, water and environment:  pesticides, herbicides, chemicals of all kinds, flouride, plastics, petroleum.  i'm making an effort to simplify and get rid of all the garbage as much as possible.  it's an elusive quest, but i'm making an effort.  i can see a difference.  it's really about getting back to nature, which God created."     6.  SLEEP PRACTICE   From http://www.fdnhhealth.com/groups/17-insomnia--   Sleep Practice: Falling asleep, again, and again    "In order to fall asleep, the brain must be synchronized. Verbal thought must be extinguished and replaced with abstract and spatial thought, which tends to induce a calm state. For someone with insomnia, this is no easy task, as verbal thought from a busy day continues pouring in, well into the night. The brain can be trained to give up verbal thought with methods of spontaneous relaxation. A calm day is the best recipe for a calm night. Regular practice of relaxation techniques throughout the day makes for an easier transition into sleep during the night. Once night arrives, these and similar techniques can be beneficial for initiating sleep.  Establish a routine for falling asleep, whether for going to sleep for the first time of the evening or going back to sleep after becoming awake. Take ten minutes to progressively relax the muscles of the body. Sometimes a warm bath can help. If the body is especially tense and agitated, use a muscle tensioning technique to initiate a deeper relaxation. With muscle relaxation, breathing should also become slow and regular. At this point, ask yourself how intensely the stream of verbal thought is pouring into your brain and from how many directions. It must be squelched before sleep can occur. There are many techniques for calming the brain. Traditionally, one of the most well known is counting sheep. Many individuals, however, find that continuous counting is not very effective, as it is too easy for verbal thought to slip back in. Sequential counting of breaths works better. Each breath is counted up to a count of ten, and then the sequence starts over. Enough attention must be devoted to keeping up with the count that the brain has to concentrate on only one thought.  Simple counting is most effective for mild thought congestion only. More elaborate and effective techniques require props.   Tools for sleep training include a simple CD player or MP3 player and relaxation recordings. There are almost an unlimited number of different types of recordings or you can make your own. Most of them deal with breathing and muscle relaxation. Which ones work for you is highly dependent on individual taste. Often the voices are a little bit too “sing-song” or overly enthusiastic and the music is a little bit too “sweet”. Find one that works for you, learn progressive muscle relaxation and breathing techniques, and then put these recordings away or pass them on to someone else. Once learned, use them as part of your regular nightly sleep routine. There are many guided imagery recordings available, but your own imagination is equally effective. A familiar place from the past that contains pleasant memories provides a perfect vehicle for shifting the brain away from verbal thought. Other suggestions for imagery include memories of a favorite vacation spot or a road trip. Imagine a country road with farms, big overgrown trees, and familiar landmarks along the way. Imagery can even be more abstract. Thoughts of changing shapes or colors, almost like a screen saver, can sometimes be enough to suppress verbal thought. Imagery and deeper sleep in general can be enhanced by music. Certain types of music, usually specifically written for the purpose, promote the formation of delta waves, the deeper brain waves associated with sleep. One step further, specially recorded music with delta waves imposed within the recording are effective for inducing and maintaining sleep. The best known of this type of sleep music is “The Delta System”, by Dr. Jeffery Thompson. Several variations of delta sleep music can be easily obtained with an internet search.  “Letting go” is a very important part of going to sleep. All of the concerns that hound you during the day must be put to rest before you can rest. Rarely can problems be solved during the time that you devote to sleeping and always problems can be handled better after a good night’s sleep. Consider placing a jar with a lid by your bedside. Symbolically, the jar is opened, thoughts are placed inside the jar, and the jar is sealed until the next morning. Whenever thoughts of the day arise, shift your mind to the jar. This practice is surprisingly effective. Adjuncts for encouraging and maintaining sleep include a warm bath and a low sugar snack such as whole grain cereal or a glass of warm milk just before going to bed. A little bit of melatonin under the tongue is often effective for initiating sleep. Side effects with melatonin are generally dose dependent. Start with only ½ of a one milligram sublingual tablet. This small dose can be repeated several times. Other supplements and/or medications can used as directed above.  Many sleep experts recommend that upon waking in the middle of the night, you should get up, turn on the light, and read or do some other type of activity until you become sleepy. While getting out of bed works for some, this is a perfect opportunity to stay in bed and practice spontaneous relaxation exercises. Have your CD player ready by the bedside, do not turn on the lights if possible (light suppresses melatonin secretion), and start practicing before the stream of verbal thoughts starts pouring in. Not only will you have made good use of valuable practice time, you will probably be asleep again before you know it! Easily slipping into a state of non-verbal calmness does not happen overnight. It must be regularly practiced during waking hours… practice, practice, practice." FROM DOM:  Easier said than done, but this article had some good thoughts.  My insomnia story is at www.fms-help.com/insomnia.htm - my sleep disorder began when I was 16.  I am now 58.  I am finally medicated correctly for sleep after decades of miserable, torturous, life-wrecking insomnia - see www.fms-help.com/what.htm.

8.  PAMPERING

From a reader--

"I have just had two weeks at a health spa for my Fibro, it was divine treatment, but I have such head to toe body pain still.   It has affected both archilles hence the tendon has shrunk it both legs walking thru the pain, hence goin to hospital tomorrow to have orthotics made for my sneakers, I find it hard to play the piano and knit but just keep doin it anyway.   This a very cruel disease, I cannot imagine cancer being any worse pain.  Never mind things could be worse."

9.  NEURONTIN

Reader 1--

"I wanted to comment on the Neurontin piece in this newsletter www.fms-help.com/063010.htm. It tried it for about a month and a half and felt horrible!!! I had just about every side effect listed and to say it wasn't a pleasant month and half would be an understatement. I remember you describing one of your medicine adventures as feeling the need to hide the knives and guns and that is exactly what I was feeling.   I was battling my mind on top of horrible physical side effects. Not a good experience for me."

Reader 2--

"I'm particularly interested in this article on Neurontin www.fms-help.com/063010.htm, because it's made such a difference with my FMS and CFIDS. It was quite by accident that I found this out when I crushed the nerves in my feet, surgery was unsuccessful. The surgeon put me on Neurontin (2) four times a day. That was for the nerve pain. What I found out was that as soon as I started taking it..(within days) my FMS and CFIDS became so much better. I'm not just talking about a little better, but a lot better.This came about a year or two before the Lyrica commercials, I didn't realize that Neurontin was just the generic brand of Lyrica, or so I was told by my physician. [*See NOTE from Dom below.] Obviously, the Neurontin is much more cost effective. I still do have my bouts from time to time when some incredible stressor comes along, but overall, Neurontin and walking (in home, I'm unable to walk on any hard surface). If anyone has any questions about this, I'd be more than happy to try and share more specific info."

 FROM DOM:  Neurontin and Lyrica are related, but not exactly the same thing.  See http://en.wikipedia.org/wiki/Gabapentin - Snippet: "Parke-Davis developed a drug called pregabalin to be a successor of gabapentin,^[2] which was brought to market by Pfizer as Lyrica after they acquired Warner-Lambert. Pregabalin is related in structure to gabapentin and is approved for treatment of epilepsy, neuropathic pain associated with diabetes, fibromyalgia, post-herpetic neuralgia, and generalized anxiety disorder. Compared to gabapentin, pregabalin is more potent, absorbs faster and has greater bioavailability. Higher potency leads to less dose related adverse effects.^[42]"

 

10.  FLYING CARS

From a reader--

http://www.msnbc.msn.com/id/38007469/ns/technology_and_science-innovation/

 

11.  XMRV - LATEST RESEARCH CONTROVERSY

Links from readers--

 http://news.sciencemag.org/scienceinsider/2010/06/conflicting-papers-on-hold-as-xm.html

http://www.prohealth.com/library/showarticle.cfm?libid=15447&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews

 

http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj#articleTabs%3Darticle

http://www.prohealth.com/library/showarticle.cfm?libid=15431   http://www.forums.aboutmecfs.org/content.php?174-XMRV-Confirmation-Around-the-Corner-Journalists-Report-FDA-NIH-Confirm-XMRV-Findings

 

 

FROM DOM:  See my XMRV retrovirus page at www.fms-help.com/XMRV.htm.

 

 

 

12.  SHINGLES VACCINE

 

Responses to www.fms-help.com/063010.htm about the shingles vaccine and FMS/CFIDS--

 

Reader 1--

 

"I will tell you that I AM getting the shingles vaccine when I am old enough - I thought 60. I worked fulltime for the Dept. of Health, Div. of Immunizations, as a secretary, which really means nothing, but my friends went thru miserable shingles and Lyrica really helped the one. My mom only had a mild case of it...I've gotten other vaccines, flu shots, etc. and no bad reactions... (that's me and I'm sensitive)."

 

Reader 2--

 

"The shingles vaccine is NOT appropriate for any of us with autoimmune for our immune system will not respond appropriately.  While I had considered the vaccination, my doc said it would be my decision and not hers.  Her comment told me a lot.  Since then and the H1N1 fiasco, I have resolved to NOT expose my body to any vaccine for any reason.  Read the drug insert.....

Who should NOT get the vaccine?

Zostavax® should NOT be administered to individuals

• with a history of anaphylactic/anaphylactoid reaction to gelatin, neomycin, or any other component of the vaccine; Zostavax Package Insert  (10 pages)
• with a history of primary or acquired immunodeficiency state, including leukemia, lymphoma, or other malignant neoplasm affecting the bone marrow or lymphatic system, or with acquired immunodeficiency syndrome or other clinical manifestation of infection with human immunodeficiency viruses;

 Reader 3--

" I have wondered about getting the vaccine for shingles myself.  My mom used to get shingles, and my brother has had them.  I had chicken pox when 16.  And, I don't think you could have had the chicken pox vaccine - it wasn't available even when my kids were little and they will be 40 to 30 this month.  It came out sometime after my kids had all had the chicken pox - the oldest started it and iut went through even to the baby.  I should probably just get the shot - I have heard singles can be so bad.  I am glad to hear your latest outbreak was less than your first.  I have been having som sort of virus now, I guess.  My husband told me this morning that he has it now - I just got in maybe 3 days ago so it is a fast one.  I feel better today but still not 100% - but how do we know what 100% for us even is with the constant fibro?"

 

13.  OREGANO OIL FOR SHINGLES vs. ACYCLOVIR

From a reader--

"I had shingles and took the oral antivirals for over two weeks and was still breaking out more.  Oregano oil slowed and stopped then resolved that breakout in 2002.  Then in 2009 I felt the tingling pain begin again.  I had oregano oil and started 3 drops every hour orally while awake and at the 2-3 potty trips that night.   Oh, did I mention that I went to the local doc that first day and was told I must be imagining something because shingles only breaks out once in a lifetime.  [NOTE FROM DOM:  Boy, is that doctor ever wrong!!] Well, when I went to the pharmacy to get the Acyclovir RX by the doc filled, the pharmacist said that he fills RX all the time for second or third or even more break out of shingles.  We are in a very small community so his testimony really verified my perceptions about myself.  By 6 hours into Oregano Oil treatment I felt a slight lessening in the painful tingling and continued the Oregano oil (Oreganol brand as it is the most effective from a specific  type of Oregano).  By the next morning the colorations had begun to fade, no blisters ever developed and the matter resolved.  I never took the acyclovir!"

 

14.  COLLOIDAL SILVER & XMRV

From a reader--

"Since the XMRV virus discovery I have researched the "natural" remedy possibilities and settled in on "colloidal silver".  In Jan this year colloidal silver helped my husband over a month long illness without surgery.  After much online research we made our own rudimentary CS (colloidal silver) home generator and have been taking the resulting silver water (which is essentially colorless) with a continuing lesseninng in the chronic fatigue/fibromyalgia symptoms.  We got a water distiller rec by the silver forum I a consult daily.  And today the automatic generator with auto turn off arrived and is brewing the first batch of even more pure CS than we have been consuming.  We have accumulated literally pages of information about the benefits and health properties of ionic silver/colloidal silver and are beginning to experience them first hand."

FROM DOM:  I use a highly reputable Colloidal Silver for battling infections of various kinds.  It's kept me out of the doctor's office many times.  I first discovered the usefulness of this Colloidal Silver around 1996.  Write dombush@bellsouth.net for brand name.  Not all colloidal silvers are safe.

 

 15.  METALS TEST

From a reader--

"In your last newsletter www.fms-help.com/063010.htm that company selling the pectin and seaweed chelation stuff sounded interesting.  My doctor wants me to do a metals test.  You take a pill three times a day for one day, the next day for 24 hours you collect urine, then you fill out a form how much urine you outputted and send in a small vial of that urine.  I would be scared of IV chelation with that EDSMA stuff, as I heard it's hard on your kidneys.  But the fruit pectin and seaweed algenate sounded okay."

FROM DOM:  Has anyone had a heavy metals test?  Write dombush@bellsouth.net.

 

16.  OCCIPITAL NEUROMODULATION

From a reader--

"I was browsing the internet tonight and read of a procedure called Occipital Neuromodulation performed on patients with severe fibro pain in whom medication is no longer helping (this part souds so scary).  I haven't found much about the procedure other that it uses special device (implant) to deliver specific, low-power electromagnetic pulses to reduce chronic musculoskeletal pain in Fibromyalgia patients. According to some of the patients (you can browse youtube.com), the procedure seems very promising.  I was thinking that somebody might have mentioned that in one of your newsletters but I did not find anything. That's why I am sending this to you to see if you heard of it and know of any successful stories.  It seems like hope, but this journey of suffering is terrible. See this video on youtube: http://www.youtube.com/watch?v=ceYd3FQNUWk."

FROM DOM:  Wow.  This lady sure explains the isolation of chronic pain from fibromyalgia and migraines.  See additional information about occipital neuromodulation at http://painmd.com/treatments/implantable-technologies/occipital-neuromodulation.html.

 

17.  SAVELLA (MILNACIPRAN)

Reader 1--

"My doctor put me on Savella two weeks ago, and so far the only thing that has changed is I don't sleep as well.  I have been up since 3:30.  Normally I would sleep all night and wake up around 8 a.m.  I will give the Savella a few more weeks, and if I don't feel any better I will go back on Cymbalta."

Reader 2--

"Called my Doc this AM to take me off the Savella.  Been on it about 2 months and not helping pain.  Now causing vivid nightmares, irritability and making depression worse.  This is one of the drugs that you must wean off of and not just stop taking.  I'm done trying fibro drugs.  Side effects are as bad as the disease!"

FROM DOM:  See my personal list of things I use at www.fms-help.com/what.htm - I have some good ideas there based on 28 years experience as a fibromite guinea pig.

 

18.  READERS' PRAYER CORNER

"Bear ye one another's burdens and so fulfill the law of Christ." Galatians 6:7

Ms. A - Please pray for much-loved granddaughter (A.L.) who has chosen to leave our Lord's protection.

Heidi - Much physical suffering.  Please uplift her in prayer.

Anonymous - Pray for a reader with chronic illness, depression and marital stress. [FROM DOM: See "Marital Harmony: An Emergency Marriage Manual" for Christian women at www.fms-help.com/marriage.htm.]

Cheryl - Many unbearable burdens - physical and emotional.

 Dom - update - my elderly mother is recovering from diverticulitis.

Linda - update - her little dog who was very sick is recovering.  [FROM DOM:  Those of us who have much-loved pets can understand.  My 2 chihuahuas say, "Yip!  Yip!  Hooray!"  Pets can help us cope with stress and they offer unconditional love.]

 

19.  SOOTHING MUSIC

From a reader--

"I came upon her music by accident on www.blueletterbible.com.  I think she's so anointed.  Click on the link below to listen.  I ordered her album "Scripture Songs Vol 1"  They don't have any of her albums in the Christian bookstore and said they couldn't order either.  Hope this blesses you.  http://new.music.yahoo.com/sherri-youngward/tracks/heaven-revelation-21-1-4--217366336."

 

FROM DOM:  I loved this!  Listen, relax, and be blessed........aaahhhh!

 

 

 

20.  ENDOCRINE SYSTEM & CFS

 

From a reader--

 

"I found this interesting article written by an endocrinologist about endocrine causes of chronic fatigue. The link: http://www.goodhormonehealth.com/symptoms/endocauses.pdf.  Not many endocrinologists are willing to go outside of the standard blood tests and investigate possible endocrine disorders for people suffering from chronic fatigue or diagnosed with CFS."

 

 

21.  CENTRAL SENSITIVITY SYNDROMES

 

From a reader--

 

"Why do people with FM usually have so many other disorders? The answer to that may be found in a new paradigm proposed several years ago by Dr. Muhammad Yunus. He suggests that many of these related illnesses could be classified as Central Sensitivity Syndromes.  Basically, this means that the central nervous system becomes hypersensitive, which stresses the rest of the body and can eventually lead to any number of different disorders. (See “Are Fibromyalgia and Other Chronic Conditions Associated?”  for more information on Central Sensitivity Syndrome.)

 

Causes

 

In the past few years scientists have made tremendous progress unraveling the mysteries of fibromyalgia. Although there is still some disagreement as to the cause of FM, there is little disagreement that its onset is usually triggered by some form of trauma. The trauma may be physical, in the form of an injury or illness, or it could be an emotional trauma that produces severe, prolonged stress. 

Current research seems to indicate that some people have a genetic predisposition to fibromyalgia, although the symptoms usually do not show up until triggered by one of these traumas.

One popular theory as to the cause of fibromyalgia is that a trauma or significant stressor turns on an individual’s “fight-or-flight” response. This response, designed to help us function in an emergency situation, usually only lasts a short time, then turns itself off. But when the stress becomes prolonged, the fight-or-flight response gets stuck in the “on” position and the person’s body remains in a state of high alert. Being in a constant state of high alert puts even more stress on the body. This results in, among other things, a loss of deep, restorative sleep, which in turn causes pain amplification throughout the body.

Regardless of what initially triggers the illness, research has shown that fibromyalgia patients have very real physical abnormalities, including:

 

• Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems fibromyalgia patients experience.
   
• High levels of “substance P,” a central nervous system neurotransmitter involved in pain processing.
   
• Low levels of nerve growth factor.
   
• Low levels of somatomedin C, a hormone that promotes bone and muscle growth.
   
• Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.
   
• Low levels of phosphocreatine and adenosine, muscle-cell chemicals.

Treatment

Since the cause of fibromyalgia remains a mystery, most treatment is aimed at relieving symptoms and improving quality of life. Most patients find that a multi-disciplined approach using a combination of prescription medications, alternative/complementary therapies, gentle exercise and lifestyle adaptations seems to work best.

Unfortunately, finding which medications, therapies, etc. work best for a particular patient is generally a matter of trial and error. What helps one patient may not help another. It’s important that the patient, doctor and other healthcare professionals work together as a team to develop an individualized treatment plan. 

 

(For more information about different treatment options, see “Treatment Modalities.” )

Choosing a Doctor

If you have a primary care physician with whom you’ve established a good rapport, discuss your concerns regarding fibromyalgia. Chances are she has other patients with the same illness, but if not, provide her with information you’ve found helpful. She may or may not remain the gatekeeper in your care, but she should be able to help you find a physician who is familiar with fibromyalgia and able to help you. 

 

In the past, rheumatologists were the specialists who diagnosed and treated fibromyalgia. However, since research is indicating that FM is most likely a central nervous system problem, some rheumatologists are no longer taking FM patients. Check with the rheumatologists in your area to see if they will treat fibromyalgia. Logically, if FM is a central nervous system issue, neurologists would be the specialists that should treat it. Unfortunately, most neurologists are reluctant to add fibromyalgia to their practices. A few, however, have jumped on board. Again, check with the neurologists in your area to see if they will treat FM.

 

 

Related Conditions

 

Seldom is fibromyalgia a solitary illness. Most FM patients have one or more comorbid (related) conditions. Which came first is one of those chicken and egg questions. 

 

Why do people with FM usually have so many other disorders? The answer to that may be found in a new paradigm proposed several years ago by Dr. Muhammad Yunus. He suggests that many of these related illnesses could be classified as Central Sensitivity Syndromes.  Basically, this means that the central nervous system becomes hypersensitive, which stresses the rest of the body and can eventually lead to any number of different disorders. (See “Are Fibromyalgia and Other Chronic Conditions Associated?”  for more information on Central Sensitivity Syndrome.)"

 

FROM READER: "This is what I was thinking.  That it is one and the same but it manifests itself in different pain syndromes.  God willing, if the doctors can figure this out many, many people will be helped.  I found this information at this website: 

http://www.prohealth.com/fibromyalgia/basics.cfm?anchorid=26&#-26."

 

FROM DOM:  See my page at http://www.fms-help.com/nervous.htm - Fibromyalgia Linked to Central Nervous System Abnormality.

 

 

22.  GRRRRRR!!!!!!!!

 

From a reader--

 

"My first doctor is Arizona saw me laughing at Costco one weekend and told me that she was convinced that I had spent the last 3 years lying to her about having Fibromyalgia. What she didn't understand was that having a chronic illness doesn't mean you don't get to be happy. In fact, it makes the happy moments that much sweeter."

 

FROM DOM:  For more doctor comments from shell-shocked FMS patients, see my page at www.fms-help.com/doctors.htm.

 

 

 

23.  ENCOURAGING

 

http://www.fms-help.com/coincidences.htm - God knows where we are!

 

 

 

24.  TUINAL & SECONAL

 

From a reader--

 

"Re: Tuinal and Seconal www.fms-help.com/063010.htm.  These were the sedatives of choice in the 60's (Valley of the Dolls was all about them). These are terrible drugs - they are addictive in that you won't be able to sleep without them. Not only that, they "grow" on you.  You gradually need more and more for them to work.  I took them occasionally as a young person.  They fall into the class of "hypnotic" as well.  They make you really woozy and they do NOT wear off in the morning.   My mother in law took them in the 70's for insomnia.  After a few years she was taking 2 a night and they still didn't work.  Don't go near them!"

 

  

25.  DARK CIRCLES UNDER EYES

 

From a reader--

 

"Many of us don't look sick, but I can't get rid of the dark ugly circles under my eyes..from not getting the proper rest and the bed dread.

Can you post on your next newsletter asking if someone know how to help me with this? PLEASE?"

 

 

 

26.  JOYOUS DANCE IN BUDAPEST, HUNGARY

 

From a reader--

 

http://www.youtube.com/watch?v=i5dSIL358NM - Can you picture this happening in Washington, DC??!

 

 

 

27.  BRAIN ENERGY RESTORED DURING SLEEP

 

From a reader--

 

http://www.kurzweilai.net/news/frame.html?main=/news/news_single.html?id%3D12356

 

 

28.  OXALATES & FIBROMYALGIA

 

From a reader--

 

 "Have you read anything that correlates FMS pain and Oxalates?  I found this very interesting because last year I developed kidney stones and now I know why. The doctor told me stay away from certain foods and beverages but they never explained why...well because of Oxalates.

Oxalates bind to calcium which forms crystals which then end up residing in our kidneys, our mucsles and other places, they can also breach the blood-brain barrier.  I am sorry if I missed this but found it very interesting, I will be making sure to take a closer look at my diet for sure.  Phosphorous can help counteract the binding process this is why the diet has to be balanced and if not just like everything else ...everything in moderation. Could this be why certain foods cause flare ups? http://doylene.wordpress.com/oxalates/ and http://www.ehow.com/how_2273889_create-low-oxalate-diet-fibromyalgia.html. 

 

List of foods high, moderate and low oxalate:

http://www.ohf.org/docs/OxalateContent092003.pdf

 

FROM DOM:  Interesting topic!  Notice that soy and peanuts/peanut butter are extremely high in oxalates.  BTW, the only 2 references on my site to oxalates are these (you can search from any Google box on my website to find topics in the entire site and all newsletters since 2003)--

 

www.fms-help.com/June2005.htm - 11. VULVODYNIA - From a reader-- "I was thinking of another issue associated with fibromyalgia which doesn't get alot of discussion...vulvodynia.  I know it's kind of personal but it is often associated with fibromyalgia and since I experience it- I know how stressful it can be.  These sites had some info about it:  www.diagnose-me.com/cond/C510175.html  Dr. St. Amand, MD, specializing in fibromyalgia and author of 'What Your Doctor May Not Tell You About Fibromyalgia' believes that all women with chronic vulvodynia have a form of fibromyalgia. He discovered that at least 11% of his female patients with fibromyalgia also have vulvodynia (painful  genitals). The guaifenesin therapy for chronic fatigue enhances oxalate crystal excretion which has been shown to be beneficial in vulvodynia also.  (I tried guaifenesin but it didn't work for me. I did it on my own but I was  pretty careful. I couldn't stand not using any products with salycilic acid after awhile.)  www.vulvarpainfoundation.org/index.html"

 

And www.fms-help.com/bladder.htm-- From a reader re: bladder problems-- "I have this same problem  and it really depends on the foods I eat. I have completely cut out chocolate, and try to limit how much tomato I eat. Spinach and beets are also high in oxalates. Also coffee. Any foods that are high in oxalates tend to cause problems for me. I try not to drink liquids after 9 PM at night, and that seems to help with the nighttime visits to the bathroom. Several years ago, when I went to my first Dr. to find out what was wrong with me, I told her about the pain and urinary problems I had been having. She was the first one to tell me about foods high in oxalates and to cut them out of my diet. That was in 1994. After being stubborn for several years I finally got the "message".   I did a search in Google using the word oxalates and found several hits. The sad part is, if you were limited on what you could eat before, this will probably make you more sad...less things to eat, and some that you might have thought were benign. And I love pumpkin pie....."

 

FROM DOM:  If you notice worsening of your fibro symptoms after eating foods containing oxalates, please write dombush@bellsouth.net.   I would be interested to know.

 

29.  SSD (DISABILITY)

From a reader--

"I was just APPROVED for SSD!!! I've waited 3 long years!"

FROM DOM:  That's awesome news!  Check out disability tips sent in by readers www.fms-help.com/disability.htm.

 

 

30.  SWEET

 

Saw this on a tote bag:

 

"Just when the caterpillar thought her life was over, she became a butterfly."

 

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FROM DOM:  Thanks to all readers who sent in pictures!  It has been WONDERFUL to see you!!!  I have been writing this newsletter since 1996.  If you haven't sent in your picture yet, here's my email address: dombush@bellsouth.net.  BTW, the darling baby in the picture at the top of this newsletter is my sweet step-granddaughter.  We were enjoying the 4th of July festival in Green Cove Springs today.

 

'Til next time, may the Lord bless and keep you!

 

Dominie Soo Bush

www.fms-help.com

dombush@bellsouth.net

 

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II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God."  Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.

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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought.  This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.