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-   -   Fibromyaglia (https://www.familycorner.com/forums/health-chronic-diseases/2594-fibromyaglia.html)

Kelpie 07-18-2002 03:50 PM

Hi, Kimmer36,

I get a weekly newletter bulletin from www.immunesupport.com and one of this week's articles was by a Dr. Dale Guyer who practices a holistic-type treatment therapy involving something called the "Transfer Factor," along with vitamin therapies, etc. that are supposed to strengthen the immune system, therefore, helping patients with FMS and/or Chronic Fatigue Syndrome. He also addresses sleep patterns in his article.

I looked the Transfer Factor up on a couple of website (and even E-Bay) and, from what I can tell, the Transfer Factor are capsules containing immune "factors" extracted from cow colostrum which are supposed to increase your immune cell function. What is kind of funny is that they also sell Transfer Factor for dogs and cats on E-Bay. Hmmm....I wonder if this is how the fad for udder cream got started... ;)

I tell you, some of the things being talked about sound kind of "out there," but then again, that's what everyone used to think about acupuncture and now it's old hat. I guess the best thing is just to try to keep an open mind and ask lots of questions, right?:)

janet 07-18-2002 04:24 PM

Kimmer 36,

I get the racing heart thing too! It is not so bad now that I limit caffeine. I drink 1 cup of tea in the morning and water the rest of the day and a cup of decaf at 4:00pm. Yes, boring but it has helped me. By the way choclate is a stimulant too! I stay away from that too or eat only occasionally. I also take Elavil at bedtime.30mg. It keeps me asleep unless the dogs start barking...then I can't get back to sleep!

Ladyinmaille, I hate the restless leg thing too! I sometimes get them when it is past my bedtime. I try to keep a regular sleep hours but I am a night owl by birth!ROFLMAO

Stava2202, Sorry you don't have any med. insurance...I have to pay for my office calls anyway with insurance, but when testing has to be done insurance is a must! Maybe just trying to change your lifestyle, eliminate stress, eat regularly,try to keep the same sleeping hours, take a daily vitamin, exercise, etc. it can help. When my neck gets all tighten up I love to stand under the shower and let it hit right in the painful part...I then use an Ben-gay product and it seems to help. See if it works for you.

I am so sorry there are so many of us suffering but then I am glad I am not the only one...these posts have been so helpful and supportive! It is good to know someone else is also having these weird body aches, pains, brain fogs, fatigue...we all can't be immagining this...who in the heck wants to feel like they have the flu all the time?

I hope we ALL have a great day tomorrow!^^

janet:daisy:

Leslie9220 07-18-2002 07:17 PM

Stava2202- Hi from Leslie9220. Hang in there! I know its rough. My oldest daughter Gwen was diagnosed with FM at 15, and mixed connective tissue disease at 20. She turned 21 last month.She's is working, but she has much more problems with fatigue than others her age. When she has a 'flare' she usually ends up in bed for a day, if she rests she is usually better the next day.She struggles with some depression. But I think most of the time she handles it well. She has no insurance from her work. and mine considers my FM, RA, and Sjogrens pre-existing so they won't cover anything, (none of it is covered including meds):ugh: We are a support group of 2 and we keep our spirits up and cry on each others shoulder if one of us is having a bad day. Make sure when you can afford it that the doctors have ruled out systemic lupus, ok? They can do a blood test an ANA. She had one done at 15 and at 17. It was negative. What has worked for her 1. a body pillow she has problems with her hips, both of them,she can't sleep on her back at all, her hips bother her but she can lean against a body pillow on her side at a forty five degree angle. and wrap one of her legs around the pillow. They are often on sale at Wall Mart for $15 or less on sale.2. she used to drink mountain dew- don't ! it has more caffine in it than a double espresso ^^ I convinced her that her sleep disturbance would lessen if she cut out caffine.3. She takes long very warm but not hot, showers just before bed so her muscles relax and it take the pain out of her feet,legs and hips. This is good to use
'Kiss my Face' Brand Anti-Stress Soul Soother Aromatheraputic Natural Shower gel and foaming bath. It's great stuff! 'Mydrugstore' (on line) has had it on sale for about $8.95 normaly its close to $16.00 but it is 16 oz. and a little goes a long way. 4. She has learned to say NO! much younger than I did (I think I learned at 36 LOL). NO to stress. NO to overtime. NO to people who drag her down, NO to boyfriends who make her feel bad, or don't understand why she may not want to go out till 4 AM. She still finds lots of ways to have fun she likes to go fishing in the ozarks with her boyfriend(he's ok and understanding). She likes hockey, baseball and soccer. British Comedy on cable.Laugh. Next Tues. we're going to the art museum together for a little R&R:p
I'm proud of her! Good luck to you, God Bless.


To Ladyinmaille, Hi there- I have restless twitchy legs too, that have been known to wake me up several times a night. Some times so bad that I kick my husband. LOL I found out that a really warm to hot soak in a tub helps as does a cup of green tea. before bed. I also am a fan of lavender oil for aromatherapy and use it right before bed.This may seem like a strange question but you know that my son is into blacksmithing I had posted that I had bought him an anvil for 5 dollars in the garage sale thread a month or so ago... I have always wondered he is interested in how to make chain mail? since you are the true "Ladyin"maille" the proper Norman/french spelling do you know who he could talk to to find out about "maille" patterns, a book or a person he could e-mail. thanks!Sorry ladies wrong forum (I know) Leslie 9220


:worm: You know what they say about FM - here in MO
Sometimes you get the bear. Some times the bear gets YOU!

ladyinmaille 07-18-2002 07:36 PM

Leslie9220
 
Not knowing how old your son is I suggest he start at www.chainmaille.com/ but if he is underage keep him out of the adult fetish site. Right below he has instructions. I got my chainmaille from Randolph (the owner of this site) and know his work to be of the very best quality. If I were going to learn, I'd use his instructions. From there you should be able to find other sites that will give online instructions but if he is underage, check them out first before allowing him access. You can always just print out the instructions and keep him totally away from the bazarre stuff they also make.

Another excellent site is www.sirclisto.com/table.html, he has a lot of links for chainmaille fashions and patterns and instructions.

I believe my daughter who is age 30 also has fms by her symptoms. So far she has been able to manage on her own but the fatigue keeps her from getting full time work. I am lucky in the fact that I have seniority at my job so I can get time off to rest when I have to.:)

Leslie9220 07-18-2002 07:48 PM

Thanks-a-lot Ladyinmaille, I think I will print my son out instructions. The site sounds too kinky for me for sure, and he is underage 17 1/2.
He is more interested in the history of the subject which is why he wants to try his hand at making chainmail.

stitcher45 07-18-2002 10:05 PM

I am so glad to know that others experience the jumping - twitching of your body. Sometimes I about throw myself out of a chair or cause a part of me to jump so suddenly and so hard that I get a bruise from hitting something. :p It really isn't funny but if I don't laugh I will start to lose it.

Yes I have the racing heart too. I again thought it was my psychotic meds - since I take such strong doses. It is heck to have FM, be BIpolar, have anxiety attacks, and have to control my blood pressure. I take so many drugs that I think I support the local drug store chain. lol ;-)

Having a place to talk and hear from others who are going through similar things that I am sure does help make all this easier to handle. For so long I knew no one else who had FM and was feeling caught between my family doc who didn't think there was any such thing as FM and my reumitologist who wanted to work with my fam doc to get so testing done. At the same time I was having trouble with pnuemonia so had to see family doc every week and was seeing the ruem. every 110 days. It was awful. I though I would go crazy. (I guess in a way I really finally did)

Hope you all have a pain free day. :heart: ^^ (())

:daisy:

ladyinmaille 07-19-2002 02:22 AM

Leslie 9220
 
go to the Clisto site for history. His is a family related site. Once you go there you will understand. Promise this is the last about Chainmaille. ;)

Lifestar 07-19-2002 07:44 AM

Hi all....

Juat a note, while researching narcolepsy on www.askjeeves.com...I was taken to a site on sleep disorders and they talk a lot about restless leg syndrome and yes..jumping twitching muscles durring sleep and while awake. I of course now forget the medical term they give it ( brain fog kicking in BIG time).

It seems that it's definately connected to a sleep disorder, which we as fibro suffers all have.

So maybe by getting the docs to address better sleep patterns with more delta sleep, you could get better control of the muscle twitchiness...

Have any of you ever had a sleep study done?

My doc has been after me to have one, but I keep oversleeping and missing the appointments!!! LOLOL!!!

For some reason, they only schedule them for betwen 7 and 8 AM and I can never get myself up and out that early!

I'm pittiful, I know. But I was wondering if anyone out there had ever been through one of those.

Val

janet 07-19-2002 08:13 AM

Sleep Study
 
The hospital where I used to work does Sleep Studies. They schedule a night for you and you usually arrive at the hospital at 11:00pm and they attach leads to you in different places to monitor you...then you try to sleep. Another person is watching the monitor and it records the type of sleep you are having or any other problems...they use this for Sleep Apena. My doctor never reccomended this to me, now I wonder why??? Is it that more Americans are having sleep troubles?

Let us know Lifestar if you are having one.

janet:daisy:

Lifestar 07-23-2002 12:03 PM

No, I'm not running off to have a sleep study done any time soon. I'm recovering from a recent hysterectomy and subsequent back injury. One thing at a time? Not my style LOL :-P::

In Physical therapy my therapist is doing trigger point massage. The OUCH factor is very high. I was wondering if any one else had ever had this therapy done, and if it was helpful or not. This is not a Fibromyalgia treatmment...it is for a recovery from the back injury...but I want to be sure it wont hurt the fibro.


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