Dom's FMS/CFIDS Newsletter
August 20, 2011
A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.
FIBRO STORY CFIDS STORY INSOMNIA STORY HELPFUL THINGS I USE PREVIOUS NEWSLETTER ARCHIVES
1. READERS WRITE"I enjoy the newsletters and appreciate the work you put into them."
"Thank you for all you do with the fibro community. Your newsletter has been a blessing since this journey with me started, as a single woman, just trying to keep a roof over my head has been a struggle since having to leave the job, as well as being denied from SS."
"I have found your newsletters to be very helpful, and they are well worth the money. Just wish I could have donated www.fms-help.com more. Thanks for doing such a great job."
"Your newsletter www.fms-help.com/newsletters.htm is so helpful and encouraging, as always!"
"I truly appreciate your great effort in writing the newsletter for us."
2. PANIC, AGORAPHOBIA, ANXIETY & POST-TRAUMATIC STRESS DISORDER
From Ryan--
"I'm an ex-anxiety sufferer (well, almost). There's a serious lack of credible online information about anxiety. So, to balance that a little bit, I decided to create a well researched guide on the topic which you can find here: http://www.calmclinic.com."
FROM
DOM: Wow! This is a great site with tons of info! I suffered
from agoraphobia and panic disorder from ages 14-34! Sure wish I had had
some help or medication back then for my misery!
3. NEW DRUG COULD CURE NEARLY EVERY VIRAL INFECTION
From a reader--
"This is interesting since some CFS folks are treated with antivirals: http://web.mit.edu/newsoffice/2011/antiviral-0810.html."
4. FIBRO PAIN AS A CHILD
From a reader--
"Though I'd cry with leg pains dr said they were growing pains, but I wonder if I didn't start fibro as kid. I know for sure had it at 18 and on! I felt pain very easily as child now extremely easily."
FROM DOM: Yes. Many symptoms (looking back) began in childhood for me too! See my page about children and teens with FMS/CFIDS at www.fms-help.com/teens.htm.
5. ALCOHOL
From a reader--
"If I could like wine or red wine, I'd probably become a wine-o if it made me feel good."
FROM DOM: Years ago a doc told me to drink brandy for my severe endometriosis pain, because nothing else was working to control the pain. Interestingly, the brandy helped! I do not like the taste of alcoholic beverages in general, but brandy seemed to suit me. Unfortunately, I found myself drinking it for other reasons - when I had trouble sleeping, when I was depressed, etc. Fortunately, my then-husband noticed the bottle going down more than it should and forbid any more brandy in the house. I'm glad I didn't go down the road of alcoholism....that's all I would need on top of everything else.
6. SAFE SWEETENERS
“Guard your heart above all else, for it determines the course of your life.”
Proverbs 4:23 NLT
8. DEPRESSION
From a reader--
"My depression
started about the same time as the fibro pain, in 1983 when I was 30 years
old. One day I sat down in the floor in my apartment and couldn't make
myself get up. Back then, no one was talking about depression like we do
now, and I didn't have a clue what was wrong. I was working three
jobs -- church music director / organist, piano teacher, secretary -- and
accompanying a fabulous community chorus "on the side!" I loved my
life! But BAM! It hit me like a ton of bricks. I
slogged my way through life for a few months, and then one day the depression
was gone, out of the blue, just as quickly as it came.
Maybe six months
later, wham, it hit again and lasted longer this time. I still didn't know
what was wrong! Then it, too, lifted. I had a few good months, and
then it hit again. This time it didn't subside. Thank God I had a
psychiatrist in my choir, and one night after rehearsal he pulled me aside and
said, "You are depressed and need medication. Call my office and make an
appointment as soon as possible."
That was the beginning of a long
process of trying different meds until we found something that worked. I
tried all the usuals, starting with Prozac, and for a long time
it seemed nothing would help. After a couple of years, we hit on
Wellbutrin, which worked for years and years, then one day
stopped helping. Now I take Celexa and have been stable
on it for many years. I only have to take 10 mg these days.
I learned a lesson along the
way, too: don't stop taking my antidepressant when I feel fine and think I'm
cured! I tried that a couple of times and both times got so depressed that
I didn't even realize I WAS depressed! A friend had to tell me! Duh
:-) I will stay on an antidepressant for the rest of my life, and I thank
God for it!"
FROM DOM: Stress (even good stress) can really mess with our biochemistry. There's an old saying that work can't kill you, but it really can! Nearly all of us with FMS/CFIDS have been Type A, hard-working, conscientious folks that were suddenly felled like this dear reader. My fibro struck literally overnight in June 1982 www.fms-help.com/fibro.htm.
9. DEPRESSION, LITHIUM OROTATE & SYNTHROID
From a reader--
"Both my daughter and I have experienced much with depression and thyroid, so I thought I would give a bit of advice about these three topics. Lithium orotate has worked well for what I would call mood swings and irritability. It has not taken care of depression, however. We add it to the anti-depressants we take. Daughter has been on Dr. Cheney’s protocol, and he does not like fish oil—says it oxidizes too fast in the body and adds to the toxic problems we have. He also says use idebenone instead off CoQ10 for the same reason. He recommends using high quality olive oil, hemp oil, and other omega 3’s instead of fish oil. Dr. Oz recommends algae oil instead of fish oil. One of the things discovered in the first gene study of those with CFS was a major gene that is different in CFS sufferers that has to do with the serotonin pathway. The SSRI’s keep the serotonin from being depleted so quickly. But SSRI’s do not produce serotonin in our bodies nor do they correct the pathway problem. Serotonin is produced in the digestive tract, too, so if bowel is not functional, probably not much serotonin being produced. Our specialist recommends 5HTP if you are not on an antidepressant for helping with serotonin, sleep, mood, etc. If I were starting again today to find relief from depression, I would try the least harmful things first—5HTP, or St. John’s Wort, or SAMe, B vitamins, fish oil and keep adding on until I got relief. But if you are desperate, go straight to a good psychiatrist. I think one saved my daughter’s life, and I would never rule out drugs to help those who need help quickly. Sometimes finding the right drug is not a quick process, but it’s better to start earlier than later, I think. Our psychiatrist says they don’t know any more about depression than they did when he started practice 35 years ago, but they keep developing new drugs which help some people. My psych says there are many chemicals in the brain and basically we have antidepressants that affect about 3 of them. It’s much more complex than we can imagine.
No one knows how to figure out which drug will help which people, so there is a protocol that can be followed for trying out drugs. You should start with drugs that give the least problems in getting off of them. I would advise do not get on Paxil. There are many others which do the same thing as Paxil. Get a good psychiatrist who knows the drugs well to figure out what is needed and if you can, start with the older drugs that are in generic—not with the newest, more complex and expensive drugs.
Also, many CFS sufferers and those with autism have problems with methylation, a detoxification pathway. BTW, SAMe will not work for someone who has this problem. There are now depression protocols which add special activated forms of B vitamins to the antidepressant regimen. These are prescription B vitamins, which may be covered by insurance. You can also buy these activated forms in supplement form but they may cause an unbearable detox response, so be careful and try small amounts at first. When I first was depressed, I upped regular doses of B vitamin, especially B6 and got some relief, but not complete. My doctor said don’t just up dosage of one or two B’s; increase them alI It helped me through for several years before I tried an SSNI, which worked for me.
In addition, my psych says some do not get relief until the thyroid is functional and Vit D levels are healthy. This has been my experience, also. When I try to lower my thyroid med, the first sign I am too low is depression. Daughter has not been able to get her Vit D level healthy, and when she took lots of Vit D supplement for one month, it made her thyroid go crazy even though she did not make a change in thyroid meds.
In addition, thyroid medication may not help anyone if their adrenal gland is not functioning well. The reader may also have too much anti-thyroid being produced. You have to ask for this test and usually is not covered by insurance, but well worth looking at. Daughter’s thyroid tested out normal for years even though she had low thyroid symptoms. She finally had anti-thyroid tested and it was super high, keeping the thyroid from getting into the cells. Then she was on compounded T-3, the active form of thyroid, for several years until her heart rate was too high, indicating too much thyroid. She changed to Armour and is doing pretty well on that. All along was taking either adrenal drops prescribed by specialists or on licorice extract and Vit C. Licorice extract is also anti-viral but does raise blood pressure so not for everyone. The meds for adrenal glands are very tricky, so I think it may be best to stick to supplements but it is difficult to figure out what supplement is best for adrenal support. Our specialist recommended the Nutramedix brand of adrenal drops.
If this were easy to figure out, we’d be well by now—or at least more functional. There are some studies that show those with CFS that have done the best did very few interventions with drugs. I think the more you add on, the more other things are affected—even with supplements—as we saw with Vit D. I’d say pick the symptoms that cause the most distress and deal with that as best you can, including using drugs for depression. Our psych said, you may have CFS/FM but you don’t need to be depressed, too. Said he couldn’t fix the CFS but he would do all he could to help with the depression, and I know this has kept my daughter from suicide."
10. TINY AMOUNTS OF FLUORIDE CAN CHANGE YOUR THYROID FUNCTION
FROM DOM: This was interesting to me because every time I have used fluoride from the dentist's office (a gel you put on your teeth) or a fluoride rinse, I have gotten sick - feeling fluish and ill for a week and usually with a sore throat. I don't use any of those things - even when strongly pressured by dental hygenists. I thought this was due to my weird health situation with FMS/CFIDS, but interestingly, my chiropractor - a vigorous, healthy man in his late 40''s - told me that he too gets sick after fluoride treatments! I recently had a thyroid test and am now on Synthroid for hypothyroidism - first time in my life my thyroid tested so low (below bottomed out). I have felt better on Synthroid - I don't have such terrible energy crashes anymore.
11. "FORGIVING GOD"
12. DEPRESSION & SLEEP
From a reader--
"What do you take for depression and sleep?"
FROM DOM: Everyone is different, but here's what I use--
http://www.amazon.com/God-Wins-Heaven-Hell-Better/dp/1414366663 - Snippet: "Rob Bell’s book, Love Wins, has generated a national conversation about ultimate issues, such as the nature of hell, heaven, and the ultimate destiny of humankind. Yet, the book has also created unnecessary confusion. God Wins is a response to the provocative questions Love Wins has raised."
14. BURNING MOUTH
FROM DOM: A newsletter reader with FMS/CFIDS has developed a severe burning feeling in her mouth and lips. She says it's like being burned by hot cheese on pizza. She thought the pain was caused by using a mouthwash with peroxide. But the problem has been going on for a month now - even after she stopped the mouthwash. The burning mouth symptoms developed after a prolonged period of intense stress (the illness and death of family member for whom she was a 24/7 caretaker). Her doctor said that burning mouth is part of fibro. I did a search of my past newsletters and found much information about burning skin, burning mouth, dry mouth, etc. It could be related to Sjogren's as well. Use the Google box at the end of this page to find the information. If you have any ideas for relief, please write dombush@bellsouth.net and I'll get the information to this reader.
15. MAGNETIC MATTRESS PADS
From a reader--
"Have you heard from anyone about magnetic mattress pads? I spoke with a nurse who says she has fibro, and she swears by hers. Just wondering if it's a possibility."
FROM DOM: I used one for many years and loved it. Later gave it to an ailing friend. The company I bought from went out of business. Be careful to do your research before purchasing. They are expensive. Google more info on my site using the search box at the end of this page.
16. WHY ARE WE SO EMOTIONAL?
http://www.hsperson.com/pages/1Aug11.htm - Snippet: "So Now Everyone Knows, Highly Sensitive People (HSPs) Are 'Too Emotional.'"
17. ORAL PROBIOTICS FOR URINARY TRACT INFECTIONS (UTIs)
18. MARRIAGE: THE HOLY GRAIL?
http://www.intervarsity.org/blog/marriage-holy-grail
19. PRAYER CORNER
Gina, who has fibromyalgia as well as this difficult situation: "My 26 weeks of disability are up and this great state does not care.. i am sure you all know how I feel right now...the pain has increased so much with just the stress of thinking that I am losing everything I have worked so hard for. i been out of work now since January. i have corneal transplants that reject all the time and prevent me from leaving the house with the pain that i have to patch eyes so i don't blink it does not hurt so much. dry eye on top of that...... this is a hard week for me. I live alone and have no support system close to me. This week has hit me hard.. Now i have an appointment with social security disability to start the process.. i had an amazing doctor who happened to be my boss.. a pain specialist in pmr & was and advocate for fibro.. I lost him in April of 2007, he passed. i just needed to vent because the hopelessness and helplessness are so strong and itsI just can't do it with all my problems."
Family of Sandy - a mom I know, age 38, who died in the hospital unexpectedly after a thyroid operation.
20. DOM'S UPDATE
It has been a very emotional week. I have had to resign from playing the piano and organ at my church due to worsening osteoarthritis (wear and tear) in my right hand fingers - no cartilage in some joints, pain, loss of function, etc. This decision marks the end of approx. 25 years of playing the piano and organ for church services, weddings and funerals. I feel bad/sad that I let my church down, but there was no other option left. I use Bio-Freeze on my fingers many times a day just to perform normal tasks, but the joints have deteriorated to where piano-playing is extremely painful and destructive to my joints. Strangely.... it seems that I have the RIGHT hand of a 95 year old and the LEFT hand of a 20 year old, but you need BOTH hands to play the piano! I am still able to teach www.fms-help.com/students.htm, and I am dedicated to training young musicians to play for the honor and glory of the Lord. I have played the piano for 48 years and taught for 20 years. I can probably manage an occasional offertory or special at church now and then, but that is all. My long term goal is to make a CD of beautiful hymns and offertories that I have played through the years. It would take some time, as I would have to do it very gradually. It will probably be along the lines of my Christmas CD www.fms-help.com/CD.htm, which was very soothing and uplifting. Music is therapeutic! For me with church playing, it was also an act of worship. It is the end of an era for me, but the Lord is in control and has our path already planned out for us. My salvation testimony is at www.fms-help.com/salvation.htm. To God be the glory!
I close now with a cute picture I have on my fridge drawn by my just-turned-11-year-old cousin last week. It always makes me smile! The bunny's name is Blue Berry, as you can see on his collar. Ha!
Bye for now,
Dominie Bush
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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.