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Archive through December 31, 2007

The TVClubHouse: General Discussions ARCHIVES: Oct. 2007 ~ Dec. 2007: Health Center: Fibromyalgia & Chronic Pain: Archive through December 31, 2007 users admin

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Karuuna
Board Administrator

08-31-2000

Sunday, December 30, 2007 - 10:46 am   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
Hey, Pamy - a long time ago you posted a website for a fibro treatment you thought had helped you. Did it turn out that it wasn't very helpful? Are you still doing it?

Mameblanche
Member

08-24-2002

Sunday, December 30, 2007 - 12:13 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
((((Pamy)))) It sucks that the place creeped you out. I'm like you, if a situation isn't up to par for me, then the whole experience tanks. DO take that blood test - just to reassure yourself that you ARE fine, hon. Worry certainly can affect one's health negatively. Between the weather and the holidays, almost everyone I know is not feeling 100% this week, my dh included who is totally rundown.

Mind you his leg pain is almost unbearable. Thankfully his MRI is in the next week or two. He's limping, and he's napping a lot more to avoid the pain. He's convinced it stems from his arthritic knee and radiates. We'll know soon enough if that's the culprit. What worries me is that he has a tremendous pain-threshold, unlike me who is a total wimp with a zero pain threshold... and he's been wincing and groaning, a lot, and that's totally unlike him. I am VERY worried, but putting on a cheery face for him, and being extra-nice, and letting him win more arguments - or circumnavigating them altogether. (wink)

Sharinia
Member

09-07-2002

Sunday, December 30, 2007 - 12:37 pm   Edit Post Move Post Delete Post View Post Send Sharinia a private message Print Post    
pamy i when i read your post i was picturing an office like the gyne bree sent susan to on dh...lol. hopefully it wasn't that bad! sounds a bit scary. a blood test would be worth putting your mind at ease

did you know that your fibro flare could possibly be a sign of healing? according to alt med theory, when you start reducing your 'toxic load' - which would def include stopping smoking..... your body can go thru spontaneous 'healing crises' meaning that it is purging the bad stuff now that the body has more energy

of course i can't say for sure that this is what you're experiencing, but its common in the healing process to go thru cycles of feeling great, then the body 'cleans house' for while, then you feel even better....


Mameblanche
Member

08-24-2002

Sunday, December 30, 2007 - 1:40 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Shar said - did you know that your fibro flare could possibly be a sign of healing?

That brings to mind that whenever I have a professional facial at the spa, I break out within a few days. It seems to want to expel the impurities etc.

Pamy
Member

01-02-2002

Sunday, December 30, 2007 - 2:54 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Kar, LOL I guess I have fibro fog today cuz I have no idea what you are talkin about LOL

are you sure it was me?? maybe it was Shar???

Pamy
Member

01-02-2002

Sunday, December 30, 2007 - 2:59 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Shar, it actually was like that office ...I shoulda ran but it was during that july worst pain ever time and I didnt care just wanted relief.

Mame, hope you and DH feel better soon xoxoxooo

aahh that makes sense about the healing process...hope thats what this is!! I actually feel bit better today....Dylan has been in TX for 4 days and I have so much I want to do before he comes home tomarrow :-)

I did get my errands done..now to tackle the list of stuff to do at home.....which doesnt incl posting here or watching tv LOL

Pamy
Member

01-02-2002

Sunday, December 30, 2007 - 3:14 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Kar, I cked my favorites and this is only fibro site I show

http://www.fibromyalgiatreatment.com/

I havent been there in ages though.

Karuuna
Board Administrator

08-31-2000

Sunday, December 30, 2007 - 4:09 pm   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
Pamy, that's the one. Did you ever try it?

Pamy
Member

01-02-2002

Sunday, December 30, 2007 - 7:06 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
I think I just cruised the site and read things...I dont remember doing anything and if I did I didnt do it long cuz only thing I am doing for fibro now is COrvalen/Calm...and my pain pills

Sharinia
Member

09-07-2002

Sunday, December 30, 2007 - 7:26 pm   Edit Post Move Post Delete Post View Post Send Sharinia a private message Print Post    
Kar, did you see my thyroid post? just wanted to be sure you didn't miss it :-)

Mames, exactly - breaking out can def be a sign of healing/expelling impurities. healing can really suck - you can look/feel like crap but you are really getting better


Pamy
Member

01-02-2002

Sunday, December 30, 2007 - 7:59 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
double dosed the corvalen/calm today and I am back to feeling great tonite!!!

I even started cleaning out closet..getting rid of clothes that dont fit...sad thing is I really like some of them....I pray I lose weight in 08

Karuuna
Board Administrator

08-31-2000

Sunday, December 30, 2007 - 8:07 pm   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
Sharinia, I saw it, but haven't had a chance to check it all out yet. Basically you're saying all these things require work with a doc? I've just had such poor luck with doctors.....

Sharinia
Member

09-07-2002

Sunday, December 30, 2007 - 8:33 pm   Edit Post Move Post Delete Post View Post Send Sharinia a private message Print Post    
glad you're feeling better pamy :-)

kar, i *totally* understand... i've had the same experience with drs

some of those things suggested don't require a doc actually. if you read thru, some are non rx thyroid substitutes.

there are also great websites with tons of info for self help. for example, broda barnes wrote what is considered the alt med bible on hypothyroidism

http://www.amazon.com/exec/obidos/ISBN=069001029X/brodaobarnesmdreA/

also like i said, if you can find a good thyroid forum on the net that might be your best bet of getting 'real help' from ppl who have been in your shoes.

forgot to mention too to both you & Holly - you may want to check out a supp called Modifilan. it's high in iodine and acts as a sponge in pulling out mercury and other toxins (which all can help the thyroid over time). i spoke with the pres of the company for hours on the phone once and he kept emphasizing how this product can work miracles on the thyroid (not realizing that i wasn't hypo, though a cfs patient)

i've been hearing about a lot of ppl having success lately with just plain lugol's iodine. it seems to be a very important nutrient that many are deficient in, esp thyroid patients

don't know if i mentioned, but sherry rogers md believes that thyroid problems are usualy a sign of toxicity - because toxins easily damage the thyroid. i believe she recommends saunaing and macrobiotics (with the sea veggies high in iodine) as a detox regimen for her thyroid patients.


Sunshyne4u
Member

06-17-2003

Sunday, December 30, 2007 - 10:52 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
I know I've already done the "thyroid" lecture but I guess it is time for a repeat.

it is VERY important to take the meds tht the doctor has prescribed each day, everyday at the same time with an empty stomach and no dairy within two hours. if you do not get your levels stabilized you will feel bad and body pains cramps can get much worse.

HOLLY says I've been having weekly massages for about 3 months now, and it's just not helping anymore--in fact, I feel it's started to exacerbate the problem. I'm also wondering if the synthroid meds my doc put me on for hypothyroidism (about 3 months ago) are causing these muscle pains/spasms. Anyone have any info on side effects of thyroid meds?

It isnt just the meds. massage is too hard for most fibro people that I know. Unless you have a mild form of our condition, the massage will cause increased levels of tissue swelling and often make things much worse long term.

For instance, for the first time in five yrs I decided to try a massage specialist who is specially trained for severe injuries. I went twice only a couple of years ago. I am still suffering from his 'pushing' on a spot on my lower back. It is like something (nerve?) was damaged and now I'm screwed permanently.

Ok, I'm changing colour as this thyroid comment is very important. IF you had progressed to the level of Fibro with chemically sensitivity, then it is very possible that the stuff IN the thyroid pill could be reacting with you.

I cannot take the Yellow 100 ug eltroxin, I cannot take the Blue synthroid. The only thyroid I CAN take is the little pure white 50 ug pill.

my specialist says that each type of med depends on the person and their conditions. Syntroid is supposedly NOT absorbed well when we already have absorption problems in our gut.
I'm not saying that this IS the problem but it could be contributing.

As for Thyroid Levels, it is best to have the full battery done and base dosage on the TSH level.


i would also like to warn against selfhelp stuff. The body is a complex thing. If you truly have fibro, you know how easy it is to crash and then you are useless for days.

the body cannot work properly if constantly being stressed with new 'ideas' to try out. It is best to do it under the guidance of a specialist.

It Can be dangerous without that guidance. especially when "self medicating" with Naturopathic stuff.

for every rare person who is helped by a procedure, there are hundreds who get nothing more than a temporary change.

I myself will always get a short period of 'feeling better' before a bad crash.

now for my usually GRUMPY comment. I would never believe a word about a product without looking at the ingredients and the solid fullyinvestigated Blind placebo studies.

salesmen and women are concerned with selling their products however they can.


Sunshyne4u
Member

06-17-2003

Sunday, December 30, 2007 - 10:59 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
In a final thought, I think I should share that 1.5 months ago I was started on a low dose med. I took a quarter of a pill and within two hours felt like I was having a stroke. I even lost speech for a short time.

The specialist was surprised as most people are started on one full pill a day then rapidly increased to 2 or 3 a day.

THAT is what I mean by chemical sensitivity to medication.

and I am STILL suffering effects. Repeating cluster headaches (? the one in which your pupils become almost pinpoint regardless of the lighting in the house)

Sharinia
Member

09-07-2002

Sunday, December 30, 2007 - 11:23 pm   Edit Post Move Post Delete Post View Post Send Sharinia a private message Print Post    
sunshyne, you know i completely understand your sensitivity and i am sooo sorry to hear how you have been suffering

i agree of course that ppl can hurt themselves by self treating, but frankly most fibro/cfs/mcs ppl i know have been hurt far worse by drs and other healthcare professionals, and have made improvements mostly by themselves

i don't know how else someone like us can get well without taking the reigns, learning all we can, and tuning into our own bodies day by day

i understand what you mean about stressing the body with new ideas, but how will having a specialist in some distance office help? esp since they always seem to want to do more, faster than we can tolerate

in fact you have told me before that you have not gotten any real help from professionals - they just make you worse. so i am surprised to see your comments.

there are some very good books out there with very detailed advice from MDs. imo you can get better advice, and more detailed and organzed info from the top experts on hypothyroidism, fibro, mcs, etc in their books than you'll ever get from some clueless half assed health professional who doesn't really listen, understand, or care about you

NOT to say that it is never worth getting professional help - i have gotten some - but i have to strongly disagree with your admonition against guided 'self treatment'

if i didn't self treat i would not be here.

jmho


Holly
Member

06-19-2005

Monday, December 31, 2007 - 12:00 am   Edit Post Move Post Delete Post View Post Send Holly a private message Print Post    
<it is VERY important to take the meds tht the doctor has prescribed each day, everyday at the same time with an empty stomach and no dairy within two hours. if you do not get your levels stabilized you will feel bad and body pains cramps can get much worse.

Why would anyone continue taking meds to which they are having adverse reactions, including hives, itching all over, choking on food??? I have been taking them faithfully as prescribed, even getting up early to take them and then going back to sleep for an hour or two to allow time for them to absorb. All they're doing for me is giving me symptoms that I never had prior to being "diagnosed" based on a "TSH 3rd generation" blood test which he included whilst checking liver enzymes. I'm just sorry I started taking the stuff at all--I should have followed my gut and consulted with an endocrinologist first.

And Sharinia, I totally agree with your comments about the "clueless half assed health professionals" out there. I've been given NO help whatsoever from my primary or rheumatologist for the Fibro. They waste no time, however, in telling me that there's not much that can be done for it though. Grrrr....

Sunshyne4u
Member

06-17-2003

Monday, December 31, 2007 - 12:07 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
Hi Shar, I appreciate your perspective as you were one of the lucky ones that selfhelp worked for.

I'm surprised that you'd advocate ignoring taking prescription medication and encourage "self help" methods instead though.

Maybe I am misunderstanding your post but I feel very strongly that when a body is in imbalance, medication is needed to help. After the hormones, blood sugars or Whatever! is stabilized, then a person can try out new stuff IMHO.

you have seemed critical a few times that I havent tried hypnosis or some of the stuff you've suggested. exploring Energy Healing is Number one on my list after I'm feeling a bit better however, just going to the office with Carpets? other people? shampoos antiperspirants laundry detergent Etc.....I'm sick as a dog for days. What good is any treatment if I am sick from the location?

As for reading etc, not possible when the nerves of my eyes are affected. Bad double vision and since it changes as per my headaches, corrective glasses are useless. Yes, I've tried. That and I cant hold a book to read anyways LOL!

esp since they always seem to want to do more, faster than we can tolerate


because they are not specialized in REAL fibro. Many Doctors/ naturopathic Drs still go along with the fact that it is a "mental" disorder. So they arent recognizing the malabsorption/ Chemical part of it

in fact you have told me before that you have not gotten any real help from professionals - they just make you worse. so i am surprised to see your comments.

I think you are a little mixed up from my numerous comments. Yes, I have not gotten any real help as the specialists KNEW I'd crash and was in a delicate condition...have deteriorated quite badly.

NO the doctors have not made me worse, but my willingness to try new things have made things worse (even though I research everything before trying it)

But truthfully, I have obviously misjudged some of these physical therapy people.....they tell me that they'll NOT yank me or push me....then they do.

so, I've not been permanently hurt by doctors but have been by a few Physio/ massage/ dentists.

Sunshyne4u
Member

06-17-2003

Monday, December 31, 2007 - 1:18 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
including hives, itching all over, choking on food???

you never said that earlier that I noticed. The choking on food is a typical fibro condition when you start getting bad. That may NOT have anything to do with the pill.

As for the REAL allergic symptoms you've listed, of course a person should seek immediate medical attention. Chemical sensitivity is often subtle, HIVES is not subtle and is a different pathway in the body.

You must be allergic to Synthroid. out of curiousity, is it the Blue pill??


*******************

I've been given NO help whatsoever from my primary or rheumatologist for the Fibro.

would you call a plumber if your TV cable didnt work? I am using a ridiculous example but it is applicable.

why would anyone expect a Rheumatologist to give help? they are specialists for Rheumatology...not fibro. It is difficult, but if you can find an Internal Specialist or Chronic Fatigue/ Chronic PAIN specialist, you will get some answers.

However, I am assuming that the Fibro has increased into a Chronic pain syndrome. Here in Canada big cities have a Pain Clinic that you can be referred to for a FULL review. There is a year wait!

they were very helpful.



Truthfully, there is not much that can be done medicationwise. Sharania's examples of cleansing and detoxifying really can help if a person has that problem. However, I myself cannot take most of those supplements.

I've spent thousands which ended up poured down the toilet.





Sunshyne4u
Member

06-17-2003

Monday, December 31, 2007 - 1:30 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
I just thought of something to add and it wont let me edit.

Some people have Arthritis or a connective tissue disorder as Well as Fibro. Then a rheum. specialist is the right Dr to see.

Sunshyne4u
Member

06-17-2003

Monday, December 31, 2007 - 1:42 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
darn, just htough of soemthing else! too late to edit again!!

I'm also thinking that our discussion about dietary changes is quite a few pages ago.

It is super important to figure out which foods are making a person worse.

I have a bad time at Christmas due to dairyproducts and Cream cheese especially LOL

Cream cheese has something in it that affects me neurologically, I become agitated and have to be very careful or will start a verbal fight!!

it became clear enough that my mom figured it out and in the middle of the year I did an experiment all by myself. I ate cream cheese on crackers and wow, within two hours I was storming around the house. it's affect was obvious.

Foods can affect us strangely when our bodies metabolize them incompletely.

Karuuna
Board Administrator

08-31-2000

Monday, December 31, 2007 - 9:46 am   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
It's a tough deal, isn't it?

I personally think everyone as an individual needs to be an expert on their own health, and I think that is what we are all trying to achieve here.

Frankly, if I had always followed doc's dosing instructions, I'd be dead now. Similar to those who actually have a fibro diagnosis, I'm *extremely* sensitive to medications, and even the lowest normal dose of some things can be quite dangerous.

I think you have to have balance. Get all the best medical advice you can, but YOU make the final decision. It's your body, your life, and ultimately, your responsibility.

So, even tho I sound like a broken record, I appreciate everything people share here, because information is so crucial to anyone with chronic health issues. It's so clear that what might work for one person, might well worsen someone else's condition, but so many things I've tried and found weren't through the doc.

For example, Corvalen has been very very helpful to me. I found that through my own research, and it is well researched on fibro/CFS patients. I tried it on my own. And I'm grateful that it is now helping others.

I've solved my sleep issues on my own also. My doc just tried one med after another, and of the dozen or so meds we tried over the last year, only one worked, but it caused tremendous weight gain. So I have to look for nontraditional methods for recovery.

I think it's important to yet again remember that we are all just throwing out ideas and suggestions and stories about what has worked for us. It's important that we don't tell others what to do, yet kindly suggest and talk about our own experiences.

A Happy New Year to all of you, and I pray that for all it is one with less pain and more health!

Pamy
Member

01-02-2002

Monday, December 31, 2007 - 10:31 am   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
my doc never even heard of Corvalen....so I am glad I took the reigns on that one :-) I have since told him to ck into it and he now lets his other fibro patients know about it :-)

This thread and everyone here has been a Godsend to me this year. All of the info posted has been helpful and interesting. I agree, some of us might not use one of the suggestions but 5 others might, so keep on posting any info you all get.

Together we can help eachother, and isnt that what life is about?

Thanks again to all my FF!!!! We are FFF!!!! and I love you all!

I wish you all a blessed, pain free, and very happy new year!

my new motto

LOOKING AND FEELING GREAT IN 2008

Pamy
Member

01-02-2002

Monday, December 31, 2007 - 10:32 am   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
PS..if you have fibro dont smoke....I never felt better and I have only been off them for a little over a month! Chantix rules :-)

Mameblanche
Member

08-24-2002

Monday, December 31, 2007 - 12:09 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Kar, in tune with what you are saying... I want to share a saying that my mother has said since, well, forever... Our bodies are our accountants!

What she means, is that if we listen carefully to our bodies, it will tell us if something is really out of whack as well as what works for us, and what doesn't.

Happy HEALTHY New Year, FFF!!!!!!!