View Full Version : Fibro/Chronic Fatigue Friends
11-10-2008, 12:39 PM
Hello! I'm Laura and I'd like to start a thread for mutual support and encouragement for folks like me with fibromyalgia/chronic fatigue. This thread is for positive talk and encouragement, as well as understanding support.
I'm a knitter and I love KnittingHelp.com! I love the community and the fact that I can get an answer to a knitting problem almost immediately, since there is always someone "on" looking at the help threads!
I have found that my "fibro-fog" interferes with working on some of the patterns I crave - sometimes I am able to follow the directions, and other times I just forget and can't seem to understand - and I'm talking the same project! :teehee:
But then I just work on the easy stuff until my ability to count etc.. returns. I have one project which is still on hold waiting for my smarts to come back! It is a multiple cable vest, where the cables crisscross each other - counting and following a chart is a must.
Anyway, if you have fibro and/or chronic fatigue and would like to build a friendship system online, please reply!! :waving:
11-10-2008, 04:34 PM
I was diagnosed with Fibromyalgia when my children were young. My symptoms were very severe at first but have gradually eased off. I wonder, though, if you're ever truly "cured" of it. I tend to forget that I've had it but then am reminded when I get the strange aches.
I appreciate your "fog" comment. It was a reminder to me that this is part of it. I often feel strange...like it's not normal; however, for this condition, it is.
Nice to "meet" you. I look forward to others' posts in this thread!
11-10-2008, 05:00 PM
Another knitter here with fibromyalgia :waving: I'm lucky- mine comes and goes. Unfortunately, the fibro-fog is always here, though.
We moved back to Texas from Michigan a few years ago which is when my fibro started become more manageable.
11-10-2008, 06:06 PM
Hi Auburnchick and CDJack! Glad to meet you! Do you guys want to share what works for you, what has helped? Sounds like both of you have recovered, at least to some degree, which is SO encouraging!
Here is a start on my favorites...
I wear scarves any time of the year that I need them (I used to think they were for decoration!) In summer I use silk scarves or knit my own from silky/cottony sock yarn. My neck is often so COLD!
I found some awesome stuff for energy - its called "Corvalen" and is available several places online. I take it with Fibroplex pills (made by Metagenics) and today someone at the gym complimented me on my energy!! :blooby: Now THAT makes my day!:heart: Laura
11-10-2008, 07:15 PM
I do warm baths as well. As soon as it gets to be about 60 outside, my feet are freezing and don't really thaw out until mid-spring. I also love Therma-care heat wraps.
I also make sure that I get as much sleep a night as possible. And I try not to drink much alcohol. This past weekend, my dh and I went to his family's lake house. I didn't sleep well (not enough sleep on an uncomfortable bed) and I had two glasses of wine. My entire body felt like one big bruise all day Sunday and today.
I also do pilates. And I try my hardest not to eat processed foods.
I'm definitely not cured, but now I'm lucky to only have one really bad "fibro-attack" a month. However, it usually hits more often during the winter months. I think Holiday stress has something to do with it.
11-12-2008, 11:06 AM
Good Morning :muah:
Today I am outta here really fast, and at present am making haste slowly... I have a mtg in Phoenix at noon, 3 hrs drive from here (I'm in flagstaff AZ) and I have to drop my dog off at the kennel, since I won't get home til latish.
We have snow on the peaks! It snowed here a few days ago, but melted in town. This morning does not seem so cold, but the computer says its 25* :teehee:
How about we introduce ourselves a bit more fully soon? I don't have time this morning but hope to tomorrow. I have invited several friends from a list serve I'm on, since this is such a user-friendly interface.
Have a great day!
11-12-2008, 02:55 PM
Ok...my name is Nathalie, and I live in Florida. I have two children. My daughter will be 17 in January, and my son is 14. Both are in high school. I've been married for 19 years and have three dogs and one rat. We had two rats, but one passed away a few weeks ago. I'm presently hunting for a teaching position. I went back to school a couple of years ago and finished up my bachelor's in the spring and walked in my commencement ceremony this past June. Good stuff, I tell you, although I'm stressed because I'm subbing, which does not pay the bills. I love subbing but think the pay is ridiculous.
What helped me, in the beginning, was Coenzyme Q10 and magnesium with malic acid. One thing I learned about Fibromyalgia is that calcium gets trapped in the muscles, and the magnesium/malic acid combination helps release it.
Exercise is also extremely important, even though it is so hard to do when you're sore and tired.
I was good about eating healthy but have done poorly lately. I used to juice and still try to do a ten-day juice fast once a year. I'm considering a juice fast for Lent.
Ok...talk to y'all later! My planning period is just about over!
11-13-2008, 03:03 PM
My name is Courtney and I live in Texas. I've been married for a little over eight years and we don't have any kids... yet. I have to put that "yet" in there to appease my mother and mother-in-law. :teehee: I teach a beginning knitting class, help out at my lys, work at the library, and sell baby clothes.
I was diagnosed right around the time that I got married. Hmm... wonder if that's just a coincidence... It took a while to get diagnosed because I was just 25 at the time. Drs kept telling me that I was too young to have it. My mom was in her mid 40's when she was diagnosed.
Nathalie, I did take magnesium for a while and wasn't feeling any different. Maybe I should start it up again and give it longer to start working. You know, when you feel lousy, you want it to start working yesterday.
11-13-2008, 06:28 PM
Hi Nathalie and Courtney,
My name is Laura and I am 51. Iwas diagnosed 2 years ago but I think I have had fibro always. My sister was never diagnosed but I believe she had it, really a very severe case too. Which makes me mad and is one reason I am a one-woman ad campaign to get recognition and understanding of fibro/chronic fatigue.
I have 3 kids, they range in age from 26 to 21, and are out on their own. I have a dog, Holly, who is my close companion :teehee:
I am going through a divorce right now, my second... which is stressful, even though its the best thing in the circumstances.
I am a registered dietitian and I focus on FM/CFS in my work. I work for myself but am looking for a "regular" job too to provide more security. I'm hoping to find one where I can continue to help people with fibro.
I have had a heck of a couple of days... could use your good vibes sent in my direction! I'm going to go to Atlanta next month to get a workup form a specialist clinic there, and I'm really hopeful..(did I already post that before?) but right now my brain fog is frustrating the heck outta me. Just doing "normal' things is really hard -m driving, paying bills, juggling finances...:whoosh:
Even regular computer stuff is just too much for me. So hopefully tomorrow wll be better!
Interesting what you say about Magnesium helping get the calcium out of muscle cells. I take fibroplex which has magnesium, malic acid and manganese, and some Bvits - I do think the malic acid is essential. Probably just plain magnesium is not enough.
Talk more soon :waving:
11-16-2008, 06:35 PM
Hi Fibro-Friends :waving:
Hope you are having a good day. I added back short-acting guiafenesin a few days ago, which I had stopped back in May when all the !@#@$%#^& was hitting the fan - not sure if you guys are familiar with guai? Dr. St. amand (author of What Your Doctor May Not Tell YOu About Fibromyalgia) is the one who develpoed the protocol.
Anyway what happens with both long acting and short acting is that in the short run it makes symptoms worse but in the long run you get better and better and lots of people have gotten completely better. If you want more info just ask, I won't go into a long song and dance in this post :blooby:
So have had a few mild indications that things are moving - and have decided a few things. In fact, yesterday I took myself in hand and developed a new plan :yay:
I usually have intensified symptoms in Autumn (even though I really love Autumn!) so it is a good time for me to simplify and gear down. So that is the main objective of my plan. As an extrovert I really like to be social, but right now I'm not gonna - mainly stay home and take care of myself. Soon, I hope, I will have a "real" job, so now is a good time to hang at home and get home stuff done, gently though! No over-achieving.
I have heard that people with FMS/CFS tend to be over-achievers, and the Teitelbaum book really goes into it... he describes ME to a T. So thats a good place to begin - with self-acceptance, and no judging of self OR others, and no judging ourselves when we catch ourselves judging! :roflhard:
Love to all - have to stop typing, my left hand is zinging me!
11-16-2008, 09:19 PM
Hmmm...the over-achieving thing...probably true. Although I think that it's a fact that more women have FM/CFS than men. Could it be that it's because we are the primary caregivers, etc.?
As far as the vitamins/etc...yes, it does take a long time for you to be able to tell a difference. I tend to feel better when I'm eating healthier, but it's another thing that takes time for you to notice. We have so much icky stuff inside us that it takes a long time to rid our systems of it. But once you do, you feel so great!
Gee...I REALLY need to do another juice fast...
11-17-2008, 01:32 PM
Yeah, maybe I'll give the magnesium with malic acid a try and give it a chance to work. I do eat a lot of fruits and vegetables. I try to make as much of my food from scratch. I like to know exactly what I'm putting in my body.
Funny that you started this thread now, Laura. As we just had our first real cold front of the season last week, my fibro symptoms made an uninvited return this past weekend. Now they should come and go for the rest of the fall and into the winter and early spring.
I would be interested in knowing more about the guiafenesin. I take it, but only for about five days out of the month. My dh and I are trying to get pregnant and it is supposed to help with that.
I just take a few teaspoons full of the syrup.
11-17-2008, 04:11 PM
I hadn't thought about guai as helping getting pregnant but it makes sense, thinning the mucus plug of the cervix. We don't use the syrup, there is actually quite a lot to learn about doing the protocol correctly. Here is the link www.fibromyalgiatreatment.com .
It s pretty interesting, have fun investigating :)
11-17-2008, 06:19 PM
Wow... that is interesting. I don't take anything orally that was on the "No" list. However, my shampoo and toothpaste are on the list ... and maybe my Burt's Bees lip balm.
I wonder why they don't want you taking the syrup. Guiafenesin is the only active ingredient. The pills would be easier to take. Lord knows that I don't take the syrup for the taste. :ick:
11-18-2008, 08:55 PM
Maybe THAT's why they don't have us take the syrup :teehee:
Man I am wiped out today. I am going for a hike tomorrow so I hope I have the energy!!!!
11-21-2008, 11:40 PM
My eyes are burning so bad, that the old song "Doctor my eyes" keeps going through my head!!:oo:
12-08-2008, 06:21 PM
The appt was today and I was impressed. I like the doc, and the staff... good thing, I was there 6 hrs :zombie: No Kidding! I hr with the doc and then lab work (don't ask how many tubes of blood they drew) then 2 IVs, and a shot, which I was taught to give, and gave, myself! :eyes:
My cousin came with and it was great to have her there for company and support. She even went out and got us breakfast after the labs were done, which we munched on as the first IV dripped. Just like everybody else who was there.
I have list sof stuff and new meds and then will get more and/or have them changed based on the lab results. Its a process that continues for 9 mos to a year, and by the end of that time they predict i will be recovered or almost so, and weaned off most of the meds and supps. I am really excited to see what happens and I promise to be a cooperative patient and do everything they say. I want to maximize my chances for a good recovery.
much love to all of you,
06-06-2009, 08:04 PM
Hello fibro-friends! I haven't posted in awhile, hope you are all well. I have been involved in helping design a study for a relatively new supplement that has shown promise for age-related cognitive decline and general improvement in well-being. They are now recruiting volunteers with Fibro/chronic fatigue to document its effectiveness in clearing fibro fog and improving energy among other things.
Not sure the rules on this list, so please e-mail me and I will give you info! Its free and you get the supplement for free.
07-24-2009, 10:13 AM
Hey fellow recovering fibro/chronic fatigue folks,
Wanted to keep you posted on the news- I have updated my website www.fibrodiet.net and would love for you to check it out. Also you can see my blog about fibro/cfs stuff at www.laurawittke.wordpress.com.
There is a link there for the free Prevagen study - its very cool, you get to be part of research to document the effectiveness of this neat supplement, and the supplement is free to you -- its double-blind, so that if you are in the placebo group, at the end they will give you an equal amount of Prevagen to try.
There is nothing to "do" - just sign up, and fill out a weekly online survey about how its working for you. You don't have to go anywhere, or stop taking anything you are already on.
This is not an ad, a sales pitch or anything, just a legitimate study that is recruiting folks with a diagnosis of fibro or chronic fatigue.
Hope you are all well and having a fun summer!
07-27-2009, 11:33 AM
I just wanted to let you know something you might find useful.
I noticed that, when I went on a gluten free - casein free diet to clear up huge digestive issues, many other issues resolved for me as well. One of which includes joint/muscle pain and inflammation, all over my body.
While you're in the process of developing your fibro diet, please considering doing GFCF as well. I can't tell you how much it helped me!
07-28-2009, 09:19 PM
That's terrific that you found gluten and casein were your triggers, and now you have relief! Did you use the LEAP protocol (MRT) to figure that out? I haven't tried LEAP but have heard that some people have used it to identify their triggers.
07-29-2009, 01:24 PM
no, I actually read a book called the Diet Cure, to figure out why I am so insane! When I removed gluten/casein virtually all symptoms from anything/everything were fixed. Seriously.
I had no idea that the problem was in my gut. I thought the entire problem was in my head. (Because, of course, that's what doctors/demi gods tell you and what your -sarcasm here - loving, supportive family tells you.) I didn't even realize I had muscle/joint problems until they were GONE. I just thought I was hopelessly insane and going to wind up in a loony bin.
Wouldn't it be nice if people knew these things.
07-29-2009, 08:44 PM
Wow! I wonder if you never had fibro at all, but it was the allergy all the time!!
:hug: to you for having to put up with all the dumb docs and "well-meaning" family members :cry:
Wish nobody had to put up with that! And just about all of "us" with these symptoms do! :zombie: At least now you know its NOT in your head.
08-31-2012, 01:38 AM
hi there all, I am a Chronic Fatigue sufferer as well. I have something similar to FM but it is Myofascial Pain Syndrome. I read that it differs from FM in several ways but the only one I have noticed is that the pain pressure points come and go and may be in different areas. I have other issues such as a Lupus type illness, Severe Raynaud's Phenomenon, malabsorption, and borderline diabetes. Most times my sugar level is good but it seems to go haywire without warning. I have other issues as well but too numerous to mention. My symptoms are annoying but so far they are not life threatening. I am 44 and have been on Medical Leave from my job for a while now. I miss working very much but I get muscle weakness and have issues with back and neck pain. I can't do a lot of things for extended hours and must switch up positions often
Jan in CA
09-02-2012, 02:25 AM
Oh my, Christine! Wishing for good days for you!
I don't have those problems, but I have my own assortment of conditions.. Don't want clutter up the fibro thread with them though.