Fibromyalgia, ME and related disorders

Research, illness management and support for fibromyalgia sufferers

Understanding the basis and treatment of disease.

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Re: Fibromyalgia, ME and related disorders

 
 

Re: Fibromyalgia, ME and related disorders

#281  Postby Agrippina » Dec 14, 2011 12:12 pm

I will. I just need them to help me get over being depressed every time a person looks at the house and doesn't come with money. I know it's ridiculous to expect to sell quickly, consciously, but sub-consciously I'm taking it personally. Of course, then there'll be another reason to be depressed. At least I've stopped crying all the time, above everything. And the grandkids are coming to visit in two weeks, that will definitely make me feel better.
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Re: Fibromyalgia, ME and related disorders

#282  Postby Dawn » Dec 14, 2011 1:45 pm

I hope your house sells soon, Aggie.

Anyone else finding the holiday season adding to your stress level? It sounds like it will be a good thing for you, Aggie, with the grandkids coming. My in laws will be coming which is not a joy. :)
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Re: Fibromyalgia, ME and related disorders

#283  Postby Dawn » Dec 14, 2011 1:47 pm

Scot Dutchy wrote:My wifes PMR (Poly Myalgia Rhumatica). Is pretty bad just now but she is now down to 5mg pretneson which means her body is making about 5mg of cortizone again. It is good but she is very stiff in the morning. Her mood swings are something else.


I hope your wife feels better. Pain really affects mood. I get so sick of feeling sick and irritable. I hide it pretty well most of the time, but sometimes it shows more than I like. I know it is hard for partners too.
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Re: Fibromyalgia, ME and related disorders

#284  Postby Dawn » Dec 14, 2011 1:49 pm

Paul, I am glad you don't have to deal with the pain, but I know the fatigue and weakness are hard to cope with. Do you think that contributes to your rage or is it primarily the food connection?
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Re: Fibromyalgia, ME and related disorders

#285  Postby Paul G » Dec 14, 2011 3:01 pm

Dawn wrote:Paul, I am glad you don't have to deal with the pain, but I know the fatigue and weakness are hard to cope with. Do you think that contributes to your rage or is it primarily the food connection?


I get pain after going out or doing anything mildly energetic, even walking. I can avoid pain if I choose to, basically. I think it's just the food, as soon as I eat my mood is fine! It's very odd.

Generally my mood isn't so bad, I am on anti depressants after all, but it's xmas and the OH seems intent on buying presents for the whole world whilst we're trying to save, which is driving me insane.
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Re: Fibromyalgia, ME and related disorders

#286  Postby Agrippina » Dec 14, 2011 4:12 pm

No presents except for the littlies, there is no money after the big loss of the year.
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Re: Fibromyalgia, ME and related disorders

#287  Postby Scot Dutchy » Dec 14, 2011 5:46 pm

Dawn wrote:
Scot Dutchy wrote:My wifes PMR (Poly Myalgia Rhumatica). Is pretty bad just now but she is now down to 5mg pretneson which means her body is making about 5mg of cortizone again. It is good but she is very stiff in the morning. Her mood swings are something else.


I hope your wife feels better. Pain really affects mood. I get so sick of feeling sick and irritable. I hide it pretty well most of the time, but sometimes it shows more than I like. I know it is hard for partners too.


Thanks. It improves with the day but this getting off pretnisone is so important to her that she is willing to put with a bit of pain. She sees her specialist in February and hopes to go down to two and half milligrams. She has been on them for two years now.
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Re: Fibromyalgia, ME and related disorders

#288  Postby Dawn » Dec 15, 2011 12:58 pm

The holiday season is making things extra stressful for me this year with it being a difficult time at work, etc. I usually am not allowed time off at the holidays, but I am off today through Christmas this year. I leave today for a week camping and come home to visiting in laws :(. Anyway, I will have a week of relaxation before then which is a wonderful thing!

I will check in when I get back. I hope everyone does as well as they can. *hugs*
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Re: Fibromyalgia, ME and related disorders

#289  Postby Agrippina » Dec 15, 2011 2:32 pm

I'm better. I rested for a couple of days, ate sensibly, took some drugs that eased the pain and got wonderful news that I'll be seeing all the kids in around 10 days. So I'm a happy Gran.
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Re: Fibromyalgia, ME and related disorders

#290  Postby Dawn » Dec 24, 2011 10:40 pm

Excellent, Aggie!
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Re: Fibromyalgia, ME and related disorders

#291  Postby Agrippina » Dec 25, 2011 5:54 am

It is excellent. The day is here. Have a happy and healthy holiday week, all of you.

I've decided to see a specialist in the new year. It's likely that I'm going to need to have a hip replaced. But apart from that I'd like to suggest that you guys try avoiding rich food. It seems to me that anything that's a combination of the sort of thing that goes into making dessets extra yummy is the cause of some of my problems. (Not that I'm likely to take my own advice while I sample my very successful and delicious ganache today.)
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Re: Fibromyalgia, ME and related disorders

#292  Postby Agrippina » Dec 29, 2011 2:14 pm

What do you guys think of this.
http://addfibro.com/fmsaddconnection.html
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Re: Fibromyalgia, ME and related disorders

#293  Postby PsYcHoTiC_MaDmAn » Dec 31, 2011 2:12 am

Agrippina wrote:What do you guys think of this.
http://addfibro.com/fmsaddconnection.html


first off, hate the site, it seems a random jumble of nits of info.

however a bit of reading on there, and I would say ignore it, run away from it.

a few quotes from the site
6. Seek God's guidance as you move forward. Prayer turned the tide for me.

The secret of the LORD is with them that fear him;
and he will show them his covenant. Psalm 25:14

For as the heaven is high above the earth, so great is his mercy toward them that fear him. Psalm 103:11

In order to be treated with ADD medications, you must meet ADD criteria. ADD medications cannot legally be used to treat fibromyalgia, because currently they are only indicated for ADD or narcolepsy ("sleep attacks"). My suggestion is to do your homework and see if you meet the criteria for ADD. If you are not sure, get a good book on ADD, such as Driven to Distraction by Dr. Edward Hallowell and Dr. John Ratey. It describes some of the finer points of the disorder in a way that will help you to get a more accurate picture of ADD.

ok that one isn't quite as I first read it, but it does seem to me like a suggestion to fake the symptoms of ADD to get the drugs. maybe I'm attributing intent that isn't there, but thats my first impressions of it

whats more I find this statement a bit odd, given that shes claiming that ADD drugs are the capable of reversing the disease
She believes in the power of prayer, and gives her Lord and Savior Jesus Christ credit for her miracle. Since her recovery, her passion has been to help others reclaim their health.
http://www.reversingchronicdisease.com/Content/Default/1/1/0/bio/bio.html#9

further more, had a bit of fun finding out what C.N.C. stood for (all I got was for the computer numerical control routers, quite different) but a bit of digging, CNC stands for Certified Nutritional Consultant, and to quote from the American Association of Nutritional Consultants site (the people who give these certificates)
The CNC designation is for credentialing purposes only, meaning it gives your credibility with clients, professionals and the natural health field. It does NOT give anyone a legal right to practice nutrition. To find out about specific licensure requirements governing your state, contact your states dietetic association.
http://www.aanc.net/faqs.php
The American Association of Nutritional Consultants issues a Certified Nutritional Consultant (CNC) credential to persons who take an open-book test. The CNC credential should be regarded as bogus.

http://www.quackwatch.com/04ConsumerEducation/nutritionist.html
having looked at the requirements for it I think that statement sums it up nicely

whats more, trying to find some of the "papers" cited takes me to this site http://www.sounddoctrin.com
with the tag line
God delights in doing the impossible with the ridiculous.


and the one proper paper they cite (however, cant access the paper itself)
Results: When compared with baseline evaluation a significant improvement [P < 0.05] was noticed for all the parameters with pirlindole whereas three parameters only [tender point score, psychological score, global evaluation by the patient; P < 0.05] were significantly improved by the placebo. Moreover, at the end of the four-week treatment period, pirlindole appeared to be significantly superior to placebo on four parameters [pain, tender point score, global evaluation by the patient and the investigator]. Side-effects were observed in 40% of the pirlindole-treated patients and 36.4% of the placebo-treated patients leading to 13.3% and 6.8% drop-outs, respectively. These differences were not statistically significant [P < 0.05].

Conclusion: This four-week double-blind placebo-controlled trial suggests that pirlindole [75 mg b.i.d.] might be a well-tolerated and beneficial treatment for FMS patients.
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Re: Fibromyalgia, ME and related disorders

#294  Postby Dawn » Jan 03, 2012 8:53 pm

The source does seem iffy. It would be nice to have more research on ADD meds to see if they really help.
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Re: Fibromyalgia, ME and related disorders

#295  Postby Agrippina » Jan 03, 2012 8:57 pm

I don't know. I don't think I'd like my ADD to be controlled. I enjoy being a chatterbox, busy, deep thinker, asking questions about everything all the time. Very tiring for my family though.
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Re: Fibromyalgia, ME and related disorders

#296  Postby Dawn » Jan 08, 2012 9:08 pm

Agrippina wrote:I don't know. I don't think I'd like my ADD to be controlled. I enjoy being a chatterbox, busy, deep thinker, asking questions about everything all the time. Very tiring for my family though.


I wouldn't consider myself someone who has ADD, but I am someone who thinks constantly and has trouble turning my mind off. I am very sensitive to environmental factors like sound, scents, irritating fabrics touching me, etc. I read something about sensory disorders that are now starting to be diagnosed in children as being something that could be connected with fibromyalgia. A central nervous system in overdrive is no fun.
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Re: Fibromyalgia, ME and related disorders

#297  Postby Paul G » Jan 08, 2012 10:20 pm

I'm the same. I get hot flushes, and turn into a frustrated mess.
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Re: Fibromyalgia, ME and related disorders

#298  Postby Agrippina » Jan 09, 2012 3:54 pm

I noticed this thing with environment during the holidays. We went out to the stores with our granddaughter. The crowds and her screaming really disturbed me. Then over the weekend, her parents came back again overnight. For some reason, she was very, very grumpy and stopped shrieking only when I wrapped her and sang her to sleep in my arms for about two hours. Other than that, the screaming.... Then the family were watching a particularly exciting cricket match and my dog was as disturbed by the screaming as I was. When they left on Saturday morning, I went back to bed and slept through the entire day. The confusion, noise, conflicting behaviors and the heat all just knocked me out. When I spoke about it the rest of the family looked at me as if I was crazy "it's not that noisy." Again today, in the heat waiting for something to be fixed on the car, I had to spend a couple of hours in a noisy workshop, again in the heat. I felt the same extreme stress. In the licence office, I couldn't find the photos I needed for the document. I became very distressed, and it's made me very exhausted again, I'll sleep well again tonight.
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Re: Fibromyalgia, ME and related disorders

#299  Postby Dawn » Feb 17, 2012 8:40 pm

Just checking it to say hello. Nothing much new - still tired and in pain. :)

My rheumatologist started me on Vicodin for pain at night a few months ago since the other medicine I can take during the day keeps me up, but at my last visit he said he can't write it anymore for chronic pain. If I need it I will have to go to a pain management clinic. Here there are "pill mills" that prescribe meds to people who aren't really ill who in turn sell it on the street. The gov't is cracking down on MDs because of that so most doctors now will not prescribe controlled substances unless you go to a special pain clinic where you go monthly and get drug tests to prove you are taking what you are supposed to and not abusing other drugs. For now, I have decided to try and do without the Vicodin. It doesn't help that much anyway, although I am sleeping better with it. I still have a month's worth (or 2 if I only take one a day). I will see how it goes. I really don't want to go to a pain clinic, but it may be the best place for me if I could get better pain management.
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Re: Fibromyalgia, ME and related disorders

 
 

Re: Fibromyalgia, ME and related disorders

#300  Postby Agrippina » Feb 18, 2012 1:31 pm

Dawn, I'd like to do a blog about this sometime, when I can get around to it. If you look at the post 298, you'll see I was going through a really terrible time just then.

It devolved into the worst attack of pain and "chronic fatigue" I've ever experienced, I was desperately ill for about 10 days, much longer than my previous attacks of 3/4 days. Then something (I know what it was that provoked the breakthrough but it's not important) happened and I woke up one morning about two weeks ago, and I was "fixed." I saw the doctor later that week, after I'd been to have my hair cut and done a big clean up in the house. He said the difference was unbelievable. I'd been on some blue anti-depressants for a three months. Anyway the point is that he agrees with me that my breakdown triggered the attack that put me in bed and the pain was increasing the depression so I was going around in circles. COming out of the depression, also brought me out of the pain attack. He thinks that there's some truth in the idea that this is not a single physical problem but that it's a combination of the malfunction of a whole lot of different systems, and that there's a cognitive component to it.

I told him that I want to do a blog about it and invite people to talk about their experience of it. He's now treating me for hypothyroidism which he thinks is at the root of some of my problems. Anyway, the short version is that emotionally and physically I am feeling 3000% better than I have in years. The thyroid pills will take a while to have some real effect but mentally, it's as if the world is much brighter and I have loads of new energy.
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