Chronic Fatigue

[RobertP]

I was a temple worker for a few years. This could hit me there as well as anywhere. There was no refuge from this there. At times it seems like boxing shadows, but I think I have got closer to some. I have got less sleep lately, work better, today my mind was clear and I could remember things needed for work. For me there are 2 kinds of spoons, muscle spoons and nerve spoons. Sometimes I am fine to go play, so it looks like I am not too beat up, but have me plan something or stay on task, that's a problem. I have known how to keep the physical symptoms to a minimum for years. For comparison in the last 30 or so days, though, my wife asked for almost a week for me to get the Christmas lights up and she got half of them up when I didn't, something that is easy for me and hard for her, but whatever that magic stuff is that makes me plan, get the stuff, and do, didn't, wouldn't, had to fight it every step. I got it done. To get them down, I had it all but done before she asked, even the tedious parts that require more dexterity and detail work to untangle the lights, something I have left for her every year to put up and take down. Major improvements. There is a lot I have done to get this far, but the latest step is the cranberry extract noted before, and the H2O2 isn't hurting anything, still paying attention to that. My vision even seems to be clearing, so I will be watching that. Get it? If it's not helpful, keep believing anyway. It's a very fine line in my mind between faith to endure and faith to be healed. God has power to assist with either. The choice seems to be up to this and if we endure to the end, we can be commended for both. Considering both sides, I will always have an unreasonable amount on the healing side where possible. I hope a little rubs off if you're feeling short. It CAN be done. Something else must be on the way though. Hmm. Now why would I think that?

[FunkyTown]

So I had an issue with this at times. Turns out that I was going through sugar crashes and had developed insulin resistance. There's a health food that changed all that.

It was Konjac root. It's a fiber that lowers cholesterol and swells up to 100 times its size with water, turning in to a jelly substance inside you that cleans you out and slows down digestion of sugars, leaving you at a normal level. Now, I take it with something called PGX about an hour before every meal. I've lost weight, I'm not hungry, I'm eating smaller portions and I don't face those crashes every day.

[Misshalfway]

Ok. So now I am even more confused. I watched this Oprah on hormones. And I felt like I could relate to everything.....almost everything they said. I know that CFS has a hormonal component, but now I don't know whether to scratch my watch or wind my butt. You know?

[applepansy]

Originally Posted by Misshalfway

Ok. So now I am even more confused. I watched this Oprah on hormones. And I felt like I could relate to everything.....almost everything they said. I know that CFS has a hormonal component, but now I don't know whether to scratch my watch or wind my butt. You know?

Hormone levels are only ONE thing to check when looking for the cuase of CFIDS. I saw the Oprah shows on hormones. . .both of them. (I try to avoid Oprah most of the time.) IMHO, The shows were a bit unbalanced (typical Oprah).

Miss, what you need to do is educate yourself about the disease, the treatments (everything you can fine). Find a good doctor. In SLC O.F.F.E.R. (http://www.offerutah.org/index.html) used to have a good doctor referral list.

I recommend Dr. Lucinda Batemen. It takes awhile to get into see her but she's worth it. Fatigue Consultation Clinic Dr. Bateman specializes in CFIDS and FMS.

The following link is to a presentation Dr. Bateman did about "Making the most of your Doctor appointments." DigiVision™ by InstaTapes Media © MMVI

Dr. Devin Starlanyl has written two books. . . the first on is in its 2nd Edited Edition. Very good for "not yet diagnosed" or "newly diagnosed." Her website is: Fibromyalgia and Chronic Myofascial Pain Syndrome (FMS/MPS) from Devin Starlanyl Sometimes you can fine her books at the Library. If not they are available at amazon (used too).


I hope some of this will help. When being diagnosed a good doctor will put you through a lot of testing. These illnesses are comprehensive and needed to be treated on a comprehensive level. Most Internists who practice Family Medicine don't know what to test for. But if you trust your doctor and he's willing to listen when you bring him information maybe he/she is the right doctor for you. Communication is the key.

You are in my thoughts and prayers,
applepansy

P.S. I see my regular doc in Feb and I'm asking him to check my hormone levels. I already know my adrenals are stressed and my thyroid is under attack. I've had perimenopausal symptoms for almost two decades. . . now at age 51, I just want some of this roller coaster to stop. Even now I continue to read the new research and look for new treatments that I feel fit for me and my life. Its an ongoing process for many people who suffer with these illnesses.

[Misshalfway]

I have been to four doctors. All are a dead end. I found one in Provo but found out my insurance wouldn't cover it. So.....I have been trying to read. Thanks for all your help and concern Apple. I will take a look at the books you describe. The PMS stuff is a nightmare. I am sad....but don't have a reason. I cry or get pissed but I don't have a good reason either. And I still can't drop any weight. It is just weird. And I feel like I got hit by a truck! So frustrating! And I am pretty sure my adrenals are shot too. Not sure about my thyroid as the tests always come back in normal ranges. But if I look at my symptoms, thyroid seems like a logical place to look.

I will try that doc in SLC. Maybe they will be more affordable. This other doc would cost me about 400 bucks for the first evaluation visit and then about 100 a week for 6 weeks. Just too much. But my husband is almost ready to send me anyway because it really is compromising my life. I don't know how people with CFS do it really AND keep a happy life. I go days without sleep and then feel awful when I can't function. Lately I have taking sleeping pills to force the sleep and I try to nap every afternoon when my daughter does. It helps, but I never feel rested or invigorated. That alone makes me kinda cranky.

I am starting a new diet....and trying to follow the four step approach. I have my list of supplements I take everyday and my exercise. But, it is clear I need some guidance and support. I did make it thru all of Dec and Jan without getting sick. MIRACLE! considering I was sick from August to November. I spose I will take what I can get.

[applepansy]

[QUOTE=Misshalfway;325417]I have been to four doctors. All are a dead end. I found one in Provo but found out my insurance wouldn't cover it. So.....I have been trying to read. Thanks for all your help and concern Apple. I will take a look at the books you describe. The PMS stuff is a nightmare. I am sad....but don't have a reason. I cry or get pissed but I don't have a good reason either. And I still can't drop any weight. It is just weird. And I feel like I got hit by a truck! So frustrating! And I am pretty sure my adrenals are shot too. Not sure about my thyroid as the tests always come back in normal ranges. But if I look at my symptoms, thyroid seems like a logical place to look.

QUOTE]

Your TSH ( or thyroid hormone blood levels) can test "within' normal ranges and you can still have a problem. Mine were within normal ranges . . . but I my thyroid antibodies were off the charts. It took me 18 months to convince my doctor I needed the thyroid antibody test.

Do not give up!!!

A good site for thyroid for information about thyroid issues is Thyroid Disease Information - Hypothyroidism - Hyperthyroidism - Thyroid Cancer - Autoimmune Disease - Hashimoto's - Graves' - Goiter - Nodules

Keep posting. . . If you want to talk to other people with these issues online send me a PM. I'll give you the websites.

applepansy

[Elphaba]

Originally Posted by Misshalfway

II have been to four doctors. All are a dead end. I found one in Provo but found out my insurance wouldn't cover it.

Hi Miss,

I doubt this will help much, but I would bet that ALL of us who were eventually diagnosed with CFS have gone through the same thing. I know I did. And it’s exhausting, because you’re already too ill to keep looking for a doctor who will take you seriously, including taking the time necessary to find out what is wrong. Because of insurance companies restrictions, doctors spend fifteen minutes with you, and then send you on your way with absolutely no information as to why you feel like you’re the walking dead.

I second apple’s referral to Dr. Bateman, even though she has a waiting list. She knows everything there is to know about CFS, and she really is worth the wait. She stuck with me through one of the worst times of my life, and she understood I was telling the truth about my pain and exhaustion. I saw her for almost four years before we both decided I needed to go to a pain clinic. And, today, I miss her very much.

I have been trying to read. Thanks for all your help and concern Apple. I will take a look at the books you describe.

I also second apple’s recommendation about the thyroid tests. You have to make sure the doctor tests for a number of things, not just a TSH, which is the common test for thyroid disease.

I have one more recommendation regarding thyroid tests: Be sure to get a Free T3, and a Free T4. I have talked with probably twenty people who discovered she did have a thyroid problem, because either one or the other, or both, were out of the normal range.

I will try that doc in SLC. Maybe they will be more affordable. This other doc would cost me about 400 bucks for the first evaluation visit and then about 100 a week for 6 weeks.

You know, when I first called Dr. Bateman’s office for an appointment, the first visit was around $350. I thought that was outrageous, and decided not to see her.

Two years later, I finally realized why she was so expensive. In my first visit, she spent hours with me, doing the most thorough workup imaginable. But if she went through an insurance company, it would never have paid for a three-hour visit.

I know she takes insurance now, or at least Medicare, and hopefully she will take yours. I know the $400 is a huge chunk of change, but I also understand why they charge so much today. If you can get together the money, I promise it will be worth it.

Lately I have taking sleeping pills to force the sleep and I try to nap every afternoon when my daughter does. It helps, but I never feel rested or invigorated. That alone makes me kinda cranky.

That is CLASSIC Chronic Fatigue Syndrome., and the first thing any doctor who understands CFS will do is address your lack of sleep.

I want to say, however, that you may have the symptoms of CFS, but not have the disease. Far too many people are diagnosed with it when they don’t really have it. That’s why it’s so important to see a doctor who KNOWS what CFS is.

I’m not saying these people are not ill, or are not suffering from exhaustion, because I believe they really are ill. But these people don’t necessarily have CFS, and the only way you can know for sure is to see a doctor who specializes in it, and in Utah, that would be Dr. Bateman.

All of us who have CFS know what you’re going through, as you’ve already hit the first brick wall--trying to find a doctor who will help you. It’s a horrendous experience, but just know, you’re not alone in this. I know apple would do anything to help you understand what’s happening, as would I.

You are in my thoughts,
Elphaba

[RobertP]

There are a couple of good articles on this site. Here is one for how Byron Richards feels about Oprah's experts. Oprah’s Thyroid Problem Explained | Health and Wellness News

He did another one last week.

To save the thyroid, I would go gluten free, previous links given suggest that I think, and I would suggest being aware of Dr Jeff's joint cream. Joint cream? It has CMO, which is supposed to be good for a lot of things autoimmune. Worked for my ankle, semi painful thyroid and psoriasis. Sort of an off label use for joint cream, but not for CMO.

Where I am coming clear, I can see this a little more clearly. Yeast Infection No Moreâ„¢ - Cure Yeast Infection Holistically has been helpful. It sounds like castor oil packs will help break up some of the gunk in the lymph system and get good circulation back there for some of what you are describing. I think I'm still on my way out, even though I should be asleep right now and am not due to some symptoms. They are fewer and further between.

[RobertP]

Seems like this thread is dying. I hope I'm not killing it or that something is going on somewhere here on this. I have made a lot of progress in the last 30 days. Not bad for walking circles around this thing for 20 or more years with little doodads here and there. I feel at this rate I may not go senile early. I wake up, and if it's a little hard, it clears, which it never really used to. I have more focus at work. I started ice skating, but noticed it was more cardio than I expected, so I wanted to get in cardio shape, which I have always naturally resisted, certainly at this level. I have been running 3 times, gently at first, ran a quarter lap and walked the rest. 1/16 of a mile I ran? The things that seem to be contributing to this are, in order of perceived effectiveness for me, low sugar, and only high quality like See's (or my wife's home made chocolate which just might be better) when I cheat, New Chapter Candida Take Care, 1 in the morning and two at night, although it's expensive and now I take one at night, home made yogurt, made strong with lots of liquid, to mix about a tablespoon with a glass of milk for a cultured starter, Natrol digest support enzymes, 2 or 3 with a meal, food grade hydrogen peroxide, 3-8 drops, that 25 drops I read about is hard to get down, in a cup of water, with a few drops of grapefruit seed extract on an empty stomach. My lungs finally don't feel undersized, whatever made them feel kind of smaller is not there. Not that I was short of breath, but running is less trouble, running on the track around the rink helps, a little softer than cement so I don't get shin splints. Anyway, there is the short version. Seriously, much better, shoveled the driveway when normally I would need more pressure to get around to it, etc. Hope it helps someone. It's still legal. Oh, cognitive behavioral therapy seems to change my base response to life in general so nutrition isn't fighting fear/anxiety/discomfort, so my food is used for me more than it has been in the past. Discomfort affects digestion and fear is a demon that can steal as many nutrients as I can throw at it, so it's nice to have that reasonably cleared. CBT, broad topic I guess, but the only kind I know works really well, about 10 minutes a day there.

[tomk]

My wife has Chronic Fatigue Syndrome.

If anyone would like to get in touch with her, I think she could really use your support. She just found out about it.


Tom