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Archive through January 20, 2008

The TVClubHouse: General Discussions ARCHIVES: Jan. 2008 ~ Mar. 2008: Health Center: Fibromyalgia & Chronic Pain: Archive through January 20, 2008 users admin

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Sunshyne4u
Member

06-17-2003

Tuesday, January 15, 2008 - 7:56 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
the amygdala

if I recall correctly, not only is that part of the brain involved with pain interpretation, it also involves quality of Sleep and Post traumatic stress disorder.

Sharinia
Member

09-07-2002

Wednesday, January 16, 2008 - 1:53 am   Edit Post Move Post Delete Post View Post Send Sharinia a private message Print Post    
Dovez - adrenals

yes I did a saliva test for cortisol & dhea (adrenal hormones) when I first developed CFS and was diagnosed with stage 4 adrenal exhaustion - ie, both were below range all 4 test periods throughout the day

I was 'prescribed' DHEA, pregnenolone, and standardized licorice root but could not tolerate them.

My adrenals fully recovered though to normal range within about six months with very heavy bed rest, meditation, vitamins (including B's - very impt - esp pantethine), and reducing my toxic, allergic and infectious loads

I have a friend who has found maca root to be helpful for adrenal support


Dolphinschild
Member

06-21-2006

Wednesday, January 16, 2008 - 11:02 am   Edit Post Move Post Delete Post View Post Send Dolphinschild a private message Print Post    
I don't know what happened last night, but my skin become so sensative that a hair would move and it would tickle. I thought bugs were crawling on me from it. Then I broke out into the crazy itch I described before and I had to take a benadryl to get it to go away. While sleeping, my toes did their own little dance and I woke up with charlie horses in my calves. I had to push my heels down and point toes up to get stop it. I had to go to sleep while holding that position. I woke up thinking I might have dreamed it, but when I got up out of bed my left calf was killing me from the charlie horse. It all caused me to have anxioty and if it wasn't for the benadryl knocking me out I would have been awake all night and so freaking miserable this morning.

Today I take my Mom to the Ortho doctor for her check up since the hospital on her wrist.

Can anyone recommend a good beginners yoga dvd or tai chi dvd?

I am going to keep positive and not let last night keep me from having a good day. I'm a little achy and still a little itchy.

Today on the Early Show they had a segment on Fibro. It didn't seem to give much information. In fact I thought it was kind of a useless segment.

I hope everyone has a good day.

Karuuna
Board Administrator

08-31-2000

Wednesday, January 16, 2008 - 11:54 am   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
Dc, the Yoga Zone videos are very easy and are available at Amazon.com. Make sure you get the 20 minute session one.

You can try epsom salt baths for the muscle spasms, I've found those really helpful.

Itchiness can be a symptom of fibro, or it can be an allergic reaction to any new meds that you are on. Did the itchiness start with new meds, or have you been having it all along?

If not, try using mineral oil, it's easiest if you use it in the shower, or right after, since it's pretty messy. Also, since fragrances can make this worse, make sure any lotions you are using are fragrance free.

If you are most itchy at night, make sure you are careful with the detergents you are using for washing your linens. Also, try keeping your bed temp a little cooler, that will help too.

good luck!

Karuuna
Board Administrator

08-31-2000

Wednesday, January 16, 2008 - 11:56 am   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
DC, I found these on line, you can watch the first three minutes, and if you like it, you can buy them and download them to your computer.

http://video.google.com/videoplay?docid=-9000828312749326398

Dahli
Member

11-27-2000

Wednesday, January 16, 2008 - 1:45 pm   Edit Post Move Post Delete Post View Post Send Dahli a private message Print Post    
Epsom salts 2 cups, baking soda 1 cup and ten drops of lavender essential oil makes a nice detox bath.

I can recommend a video called Qigong Chi Kung by Roger Jankhe.

For muscle spasms magnesium (citrate) has been shown to be effective.

Dovez
Member

08-27-2005

Thursday, January 17, 2008 - 12:11 pm   Edit Post Move Post Delete Post View Post Send Dovez a private message Print Post    
hello all,

there were "letters to the editor" in the New York Times yesterday re: the front page article on the 14th about fibro.

i had posted the link for that article after i read it (and thanks to someone for making it clickable!)

if anyone has the know how, it might be of interest here for peeps to read the letters of retort.
i'm glad that the times got it's comeuppance for not throughly researching its material.

Mameblanche
Member

08-24-2002

Thursday, January 17, 2008 - 12:21 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Dovez where is your post and/or the link re: yesterday's article??? I'd love to see it but don't know where to look for it here.

Dovez
Member

08-27-2005

Thursday, January 17, 2008 - 12:57 pm   Edit Post Move Post Delete Post View Post Send Dovez a private message Print Post    
i hope this works

Opinion Page

Dovez
Member

08-27-2005

Thursday, January 17, 2008 - 1:06 pm   Edit Post Move Post Delete Post View Post Send Dovez a private message Print Post    
and here are the letters to editor

Letters to the Editor

Costacat
Member

07-15-2000

Thursday, January 17, 2008 - 2:01 pm   Edit Post Move Post Delete Post View Post Send Costacat a private message Print Post    
Well crumb. I just found out that the generic for Percocet is Oxy!!! Gah! Some intense pain meds I just got filled. Am definitely gonna try and NOT take 'em!

Pamy
Member

01-02-2002

Thursday, January 17, 2008 - 8:32 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
THx Dove!! I didnt realize the national Fibro Assoc was Anaheim!!! very cool!

Mameblanche
Member

08-24-2002

Thursday, January 17, 2008 - 9:59 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Thx Dovez!!! :-)

Sunshyne4u
Member

06-17-2003

Friday, January 18, 2008 - 1:27 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
interesting letters.

i notice that the psych wrote a very carefully worded letter. I myself have serious issue with medication being given to fibro sufferers....since pain is subjective, it is unfair to try and base treatment on a person's perceptions of pain. until all other serious diseases and mental disorders are ruled out, I dont feel that a person should be labelled simply "fibro".

The side effects of meds are serious. I personally have more problems with my chemical sensitivity than Pain itself. I can handle huge amounts of pain (no dental freezing/ biopsies being cut off with no anesthetic/ working with spiral fractures until another doctor noticed the bright red bleeding under the skin etc)

What affects/cripples my life the most is the MCS.

I wonder how many fibro people will end up in the cycle of Trying meds and starting to react to them...therefore moving on to the next med.

No person should feel validated because a medication is available.

The diagnosis hasnt changed just because a Drug Company claims to have a treatment.

anyways, I can see all sides.

Mameblanche
Member

08-24-2002

Friday, January 18, 2008 - 9:58 am   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Sigh, the more things change, the more they remain the same... My article on Fibro was published in 2000. I know many of you have read it before, this is for those who haven't:

COPING WITH FIBROMYALGIA
By JSD ©

It’s disheartening being saddled with an illness that is often referred to as a ‘garbage-can’ syndrome by the medical community. I have Fibromyalgia, sometimes called fibro, sometimes FM. Let me cut to the chase - there is no cure. You know that run down, low energy, achy feeling you get when you come down with the flu. That’s me most days.
A few of the overall symptoms include chronic muscle pain, difficulty sleeping, constant fatigue, gastrointestinal complaints, and migraines. Some of the doozies are temperature sensitivity, and environmental sensitivity (to light, noise, odours, taste, and weather fluctuations.) My personal nemesis is a cognitive disorder commonly referred to as fibro-fog, which pops up mostly under stressful situations. Fibro-fog features frequent short-term memory lapses (doubly embarrassing in my line of work) and being easily overwhelmed. I’ve dubbed it cheese-brain, because I picture my memory as a piece of Swiss cheese, with holes in it.
Here is where the frustration comes into play. It took at least a couple of years before I found someone who could tell me what the constant pain and fatigue were all about. It seems like one third of the medical community completely discounts FM as a haven for hypochondriacs, and one third tend to dump their patients into this category when they are stumped, (ergo the garbage can nickname), while one third are truly knowledgeable about this complex syndrome. It’s difficult enough not feeling up to par most of the time, but to have something that often takes years to find a correct diagnosis, adds enormously to the misery.
One day, in the Fibromyalgia and Chronic Pain newsgroup, Iris Weverman, RPT, posted her reviews of several books on the subject, and indicated that her physiotherapy clinic was located in Toronto. I was lucky. This was the Internet and she could just as easily have been based in Katmandu. Her credentials include speaking engagements on the topics of Chronic Pain, Fibro, and Myofascial Pain Syndromes. At my first appointment, she immediately did the ‘tender point test’, (where you must have pain in at least 11 out of 18 specific sites on the body), which unfortunately I passed with flying colours.
Since this is mostly a diagnosis of exclusion, (meaning after everything else is ruled out, then chances are you have this) Fibromyalgia is often mistaken for illnesses with similar symptons. According to Weverman, one should picture the spokes of a wheel, one spoke representing FM, one for Chronic Fatigue Syndrome, one for Lupus, and one for Multiple Sclerosis. I know of someone who for years was told she had Chronic Fatigue Syndrome. They just discovered that she really has Multiple Sclerosis. It’s a frightening situation when you have so many illnesses that mirror one another.
Mind you, I’m not complaining. Over the past 4 years, since my diagnosis, I’ve grown accustomed to its vagaries, and have figured out how to live with it, on a truce-like basis, day to day. I ignore it and get on with life on my good days, and I coddle it with massage and the occasional painkiller on my really bad days. And truth to tell, some days it just pays to huddle under the covers, until I can regroup, and face the world, once again, re-energized.
I don’t mind fighting Fibro. But it’s exhausting fighting smug disbelief. Although according to Iris Weverman, while eight years ago it wasn’t unusual for her peers to discredit it, research is finally beginning to prove, unequivocally, that this ‘garbage can’ disease really does exist in and of itself. Saturday, May 12th, was Fibromyalgia Day. This is a giant step in a hopeful direction.

Calamity
Member

10-18-2001

Friday, January 18, 2008 - 11:20 am   Edit Post Move Post Delete Post View Post Send Calamity a private message Print Post    
Pamy: You're welcome (for the radio link, I mean). I hope it was of some help - as I said, I don't know enough about the subject to be able to tell if what was said was new information or if there was anything particularly noteworthy but thought I should pass it on anyway.

Dolphinschild
Member

06-21-2006

Friday, January 18, 2008 - 12:06 pm   Edit Post Move Post Delete Post View Post Send Dolphinschild a private message Print Post    
Dovez thank you for posting the article links.

Ms. Mame, thank you for sharing your article. You did a great job writing it. Are you thinking of updating it to add new information?

Kar, thank you for the yoga link and for the info. I have had the itchiness off and on since 1994 and two of my doctors think they are hormone related. It would seem my hormones are acting up so I would think it is still hormone related. I had the itch attack, then I woke up with my breasts killing me, then the other usual symptoms that I am getting ready to start followed as usual, including the indigestion and heartburn. Anyways, I can start between now and the next 21 days. I am either 7 to 10 days early or 3 to 10 days late anymore. I can only go by my symptoms that show up that give me a clue when I am starting. I had a few good days of no pressure in my back and pain free mostly, then I got slammed. Hormones throw me into a fibro fit, which is one of the precursors to why I was sent to be screened for the fibro.

Anyways, the VA approved the Cymbalta and I got it yesterday. I haven't started taking it yet. I am on 30mg, the lowest dose. My favorite VA doctor knows I have a sensativity to meds. The VA didn't approve the Lyrica, which is ok by me. I have been reading on it and that med makes me a little nervous to take. The VA said that they want to see how I respond with the Cymbalta first. My favorite doctor told them that the Cymbalta was to treat my PTSD and Fibro. So the VA has it labled on the instructions on the bottle. I started back on my trazadone last night and I am only on 25mg, and I always wake up really well with it and feeling more refreshed then usual. I am still taking the suppliments that my Chiro gave me, which I can tell do help. I didn't get to take it until late afternoon yesterday and the pressure in my back was making me hunch over. I took the suppliment and a half hour later, the pressure was almost gone and I was able to straighten up. I think my hormones once it passes I will feel really good again and hopefully all this will level my hormone issues out.

The articles talks about people who take all the pain meds to alieviate pain. Well I know several people, myself included who don't take pain meds at all. The only thing that might be taken is tylenol or advil. I have been suffereing from migraines since I was 20 years old, and I mean I had them several times a week. When I worked at the hospital as an ER secretary, I seen people go in there all the time for shots for migraines. I never knew you could do that. Even then once I found out you could do that, I never did. I seen so many people become addicting to the meds and drugs. That addiction problem scares me more. So I have always treated my migraine issue without pain meds, (with the excption of advil). I am allergic to codiene and vicoden, so the only pain meds the VA and others try to give me is Oxycoden. I took it when I had my gall bladder surgery and it didn't do nothing for me, but made me high and caused me to have a migraine.

We have the problem here, because we have a HIGH drug rate here and many people are users and abusers, along with manifactorers and such, that as soon as someone goes in with pain, or complains you are automatically labled a script addictor or a tweeker on the prowl for a fix. I went to the clinic one time with a sinus infection and the doctor looked at me as soon as he came in and without looking at my chart or asking me what is wrong, he said, "I am not giving you no pain drugs so if you want to get your fix, go bother someone else, I have patients who are really sick and need me." I was mortified, but the Navy in me came out and I said, "Look a**hole, I am not hear for drugs. I am a chubby girl for one so do I look like I take drugs. I happen to work, and happen to be educated and probably have more then you. I have a sinus infection and I just need an antibiotic." His eyes popped open and his mouth dropped and he said, "sorry I assumed, the nurse said something, so I must have heard her wrong." The nurse came in and appologized after the doctor left and she said since I told her I had a migraine and have been a migraine sufferer for years, she assumed I was one of those, so she mentioned something to the doctor.

So my problem is, because I don't ask for the pain meds or try to treat with pain meds, the medical community thinks my pain isn't that bad, so I am just a whinner, a hypocrondriac. So either way, it is catch 22 situation. We ask and we are labeled script drug addicts or we don't ask and we are faking, we are just seeking attention. So WTF are we suppose to do?

The last letter to the editor, mentioned how people needed to seek natural ways of getting better, the homeopathic way. Well she herself layed a pregadice comment in that. I have sought homepathic ways for the last 25 years and still no results. I did everything, like change my diet (I quit all caffiene and sodas, ate poeltry, high vegitarian diet with the exception of chicken and turkey), exercised, was thin, took the propper suppliments, even went to a psychologist and did the psychotherapy, I also went to the acupunturist. I did EVERYTHING and nothing helped. My physical body kept crumbling further and further.

Sorry I went into a rant I guess, I don't know why I did that.

I hope everyone has a good day.

Pamy
Member

01-02-2002

Friday, January 18, 2008 - 12:12 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Calamity, it was helpful, I find just hearing others talk about it helps me not feel so alone and helpless. I figure the more the word gets out the more ppl will offer ideas for help :-)
Thanks again!!

just like this thread, it has been a God send.

I am having lots of pain today but mostly back so i am thinking pms. perimenoupause and fibro is really a shit combo!

Dolphinschild
Member

06-21-2006

Friday, January 18, 2008 - 12:28 pm   Edit Post Move Post Delete Post View Post Send Dolphinschild a private message Print Post    
Pamy I hope you feel better soon. I totally hear ya about the combo. My hormone and thyroid tests come back normal, but my Chiro and my favorite VA doctor all say I have all the symptoms and my tests shouldn't be normal. Well reading here with what Kar posted, it is exactly like that for me. My tests are normal, but I have all the symptoms of the Peri-Men and Thyroid.

Your right, at least we have this thread to go too and the support of our FFF's who understand us.

Calamity
Member

10-18-2001

Friday, January 18, 2008 - 1:19 pm   Edit Post Move Post Delete Post View Post Send Calamity a private message Print Post    
I can't imagine how difficult and frustrating this all must be for you guys. I've read about fibro and there's so much conflicting and inconclusive data and claims, it just confuses me terribly. I sorta wonder if cases of fibro and other related disorders are signs of something going on with the human immune system.

Sunshyne4u
Member

06-17-2003

Saturday, January 19, 2008 - 3:47 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
sorta wonder if cases of fibro and other related disorders are signs of something going on with the human immune system

yes for some people. n triggered by a number of severe viral infections

for others it is more of a chronic pain syndrome/ symptom due to a Neck/ head injury.

LUCKY me, I had both LOL

BUT out of interest, has anyone here heard of Morgellan's syndrome?? I would bet MONEY that they actually have chemical sensitivity Fibro.

there seems to be such a cluster of them in California there is going to be a 'study'. I would suggest that the trigger would be pesticide spraying. Lots of that in those farms and fruit orchards.

poor people!!

being treated like Psych. disturbed hypochrondiacs.

I've actually heard this condition discussed on Coast to Coast radio. A lady called in about the absolutely crazy 'itching' and feelings like bugs are crawling on her.

I related immediately. Heck, I've woken up bleeding in multiple places from Scratching while being asleep LOL What a mess!

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2008/01/17/BA0EUGEBK.DTL

Sunshyne4u
Member

06-17-2003

Saturday, January 19, 2008 - 3:57 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
ROTFL Perimenopausal

I'm 45 and 'regular' yet have been told I'm Peri-menopausal since 32 yrs old. Since the doctors couldnt figure out what the heck I truly had.


I think that diagnosis is a cop out. IF you are in that time of your life a simple blood test confirms or denies it. LH and FSH. Some do estradiol as well. I nipped that dismissive " you are just perimenopausal" right out of my doctor's vocabulary with normal blood results years ago LOL

The last letter to the editor, mentioned how people needed to seek natural ways of getting better, the homeopathic way. Well she herself layed a pregadice comment in that. I have sought homepathic ways for the last 25 years and still no results. I did everything, like change my diet (I quit all caffiene and sodas, ate poeltry, high vegitarian diet with the exception of chicken and turkey), exercised, was thin, took the propper suppliments, even went to a psychologist and did the psychotherapy, I also went to the acupunturist. I did EVERYTHING and nothing helped. My physical body kept crumbling further and further.


Been there, done that....spent thousands.

BUT she is right!! that does work for Many many fibro people. I personally feel the ability to go into remission is linked genetically.

If a person has a weak gene, which was triggered by Viral infections or Chemical exposure, it is a little different than someone who had a Car accident and now has fibro.


Completely different pathways, different reasons...similar symptoms, same syndrome.

Dolphinschild
Member

06-21-2006

Saturday, January 19, 2008 - 9:23 pm   Edit Post Move Post Delete Post View Post Send Dolphinschild a private message Print Post    
Dahli I am sorry I didn't post my thank you to you yesterday. I missed your post for some reason. Thank you so much for posting it. I take epsome salt baths or baking soda, but never put them together. I don't like the lavender smell, it bothers my nose, do you have any other suggestions? I use vanilla candles, lotions etc.

My Chiro put me on 500mg of magnesiam, it is in the Fibro suppliments he gave me. He also has me on Calcet for leg cramps. I bought a new bottle the other day.

I appreciate the info you shared with me. I will look for the DVD. Again sorry for not posting to you earlier. Hugs...

Dolphinschild
Member

06-21-2006

Saturday, January 19, 2008 - 9:59 pm   Edit Post Move Post Delete Post View Post Send Dolphinschild a private message Print Post    
Dahli, I can't find that DVD by Roger Jankhe. I live here in Northern California. Can you help me find a link for this one, or recommend another? Thank you for your help.

Sunshyne4u
Member

06-17-2003

Sunday, January 20, 2008 - 2:21 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
http://tinyurl.com/2b3xzh

The Healing Promise of Qi
Creating Extraordinary Wellness Through Qigong and Tai Chi by Roger Jahnke, OMD

Here is the Dahli recommendation

http://tinyurl.com/2doz6k

here is another place that also lists DVDs


http://tinyurl.com/2bw6ez