Apr 23 2006, 05:57 PM
Recently I was diagnosed with hypothyroidism. It totally explains about 17 years of fatigue, foggy head, and depression... All that struck right about when I hit puberty, but western medical standards for thyroid hormone are so wide that one could be suffering from thyroid irregularities that go totally ignored by the doctors. Recently I bit the bullet and forked out for a holistic doctor. Her husband is an MD endrocrinologist, so this practice covers all the bases. and ladies, I swear, I almost sobbed when she started telling me how I felt just from reading my lab results! While going thru my health history, I apologized for not exercising, but she told me, "Honey, you don't have the energy! We'll get you feeling better, and then I'll tell you when to start exercising!" On my first visit, she put me on a regemine of suppliments -in the morning, a multi-vitamin, ginko biloba, genseng, and an antioxidant. At night, a couple pof herbal sedatives because sleep is when the body heals form the trauma of starving for thyroid hormone. During my next visit, she took me off of gluten, soy, and dairy. Pretty radical, but I am working hard to put my faith in her and do as she says. Too many others I know swear by her, including a woman who swings between hyper and hypo-thyroidism.
Anyway, whatta nutty head-twister of a disease! Seems so common, too. I'm just learning how to control it, but the social ramifications of the fatigue and brain fog are turning me into a recluse. I usta be such a fun gal, going out to rock clubs, helping my husband hunt for records, junkin' for myself, making art... Now I can't even hold down a job.
Okay, so this is kinda long winded, but I thought that maybe some of you other ladies have had similar experiences juggling either this nutty disease or this restrictive diet.
Apr 24 2006, 12:23 PM
there's not a whole lotta info on fibromyalgia and there are doctors who don't believe in it (my rheumatologist says what's the point in making up a name if there is no cure...).
in any case, i believe i have it. after exploring many web sites i found i have almost every single symptom. i have had undiagnosed problems since i was a child. i also have a very restrictive diet due to allergies discovered (rotation diet as well as all out avoidance of many things). in brief, i do all sorts of things to help my condition, but it all only helps so much. no cure. (i have seen all sorts of professionals for over a decade incl acupuncturists, feldenkrais practitioners, etc etc. oh, btw, i constantly ran into dr's and others who question my symptoms [i.e. deny] and still do to this day.)
i heard chronic fatigue & fibromyalgia are 'cousins' by way of diseases.
Apr 24 2006, 07:05 PM
Hey, Spirit, persevere! Someone has got to respond to your very real symptoms... I had like 12 out of 16 possible symptoms for hypothyroidism but still couldn't get it diagnosed for something like four to six years later. I was really losing hope, broaching the edge of some kind of psychosis because I could not figure out why I couldn't function like everyone else. There IS some health professional out there who can help you. I know some thyroid sites have lists of particularly responsive doctors, all submissions by their patients. Maybe there's a fibromyalgia site like that. Your rheumatologist sounds kinda like a butt.
Apr 25 2006, 12:40 PM
thanks, gretsch. actually, my rheumatologist has helped me the most except also for an endrocrinologist who had me take oral contraceptives continuously which made a huge difference (horriblyhorribly ill during periods). rheum & i tried different Rx's; he now has me on a strong anti-inflammatory. that and moving to a decent apt helped a bit as of late (last apt was drafty. not good). & of course i still do all the other things.
in general doctors are weird about 'new' diseases and also about patients trying to diagnose themselves. i couldn't be upset with him as he trusts my relaying of symptoms. and who knows if fibro is the new i.b.s. (many believe they are catch-all disease creations).
Apr 25 2006, 01:55 PM
just saw an article in wall st journal on chronic fatigue, if anyone is interested. Chronic Fatigue Is Linked To Immune System
i don't know if you need to be a subsciber. if so, i can email or fax it to you upon request. or i could post it here, but may take up too much room.
Apr 26 2006, 07:51 AM
Heck, usta be hypothyroidism was the new "catch-all" disease... I mean, if it hadn't deteriorated to the point of cancer, why bother treating it? (!!!!) ...as if treating it now can't prevent the cancer.... Glad they finally wised up!
Heck, lupus is another one of those phantom diseases, but it's very real... ask my sister inlaw.
sorry... feeling grumpy about trad western medicine after yesterday's visit with my holistic medicine woman.
Apr 26 2006, 08:20 AM
i hear ya (on the traditional western medicine front). i have seen all sorts of holistic practitioners, some good and helped me a lot, some not so great. it just happens that after i moved and saw a bunch more western med dr's, finally found some that helped as well. i only got so far on the holistic front, and that changed me and my diet, fitness, & etc. greatly, but i recently went back to western to get more relief and finally found some willing to help me with that. just gotta keep looking & when you find someone helpful, get referrals from them for more who can help. and yes, tiring.
Apr 26 2006, 12:54 PM
i've nearly given up on western medicine *and* holistic medicine after many years and many doctors and lots and lots of money spent, but i just keep on going. spirit--i messaged you, i'd love if you could email me that article.
there was also a recent finding about the genetics of chronic fatigue syndrome as written about here: http://abcnews.go.com/Health/wireStory?id=1867610
May 4 2006, 02:30 PM
hi, i sent it to you soon after. but let me know if you didn't get it! btw, wsj.com is free for a few days at the moment.
May 4 2006, 07:51 PM
hi busties! sorry to interrupt. i'm just curious, any of you tried yoga to improve your CFS conditions?
May 5 2006, 06:33 AM
hmm, i didn't get your email, spirit, but then found the article on wsj.com, so it's ok.
as for yoga, i was able to do yoga for a while, with some positions adjusted so i could do them sitting or laying down. i did it both alone and in a class, and had some experience with it before getting sick as well. i liked yoga, but i don't know that it helped me in any measurable way. (now i've gotten worse and can't do it anymore, though i'm sure i'm quite good at the corpse position).
it's a good gentle choice for exercise if you can manage it, though, and it emphasizes really listening to your body and doing what feels right rather than pushing yourself. that sort of exercise philosophy is best when you're trying to get your body moving without overexertion.
May 5 2006, 11:16 AM
that's weird. i sent it immediately. maybe some spam filter got it? (my address is a yahoo one)
May 5 2006, 11:24 AM
yoga does help me but it's really true you have to be careful, like annelise said. some programs (i do videos mostly) really give me a lot of space in the torso/back area which helps me, but if i exert too much, some of my ribs will be sore for over a week. i find videos better than classes, as the teacher can be good or bad (nitpicking you 'aren't doing it correctly' or some such if you don't explain to them before class you have limits on what you can do. just kind of a pain since chances are you can't do all the poses. i have had to take breaks in classes before, reverting to the on back with knees bent position to rest my back from poses that strain it, etc. as well as make adjustments since i have neck problems too).
i find it helps with lending more flexibility and giving more space as i mentioned. as always, must listen to your body. i don't exclusively do yoga tapes, i mix it up with other things which can be recommended. in general working my muscles hurts while doing it but helps in long run as long as i don't strain. also i have to do any phys exercising in the morning (or earlyish in the day) as by early evening i am too exhausted and tend to hurt myself every time if i do exercise anyway at that time.
Jun 6 2006, 10:53 AM
Hello to all. I am new to this website. I am currently a student at Chicago School of Massage Therapy (CSMT). I currently writing a paper on Fibromyalgia, and am having trouble finding the contraindications and cautions for this syndrome. Can anyone help me out?
Jun 30 2006, 08:59 PM
ah just an idea. I have been having chronic fatigue for over 2 years now and just was diagnosed with late-stage Lyme disease which can really cause horrendous fatigue. just thought i would mention this in case it might help someone.
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