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Post by cass on Apr 30, 2008 23:18:55 GMT -5
what is CFS? I have always ondered if I have it but have never brought it to my Dr. attention. What are the symptoms? how can you wonder if you have it if you dont know what it is?
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Post by JackMcFarland on May 1, 2008 9:50:36 GMT -5
Bingo anneny. Drs are just so quick to diagnose and prescrib!!! I mean, to diagnose Fibro or CFS is okay, but when there is really no other option. From what I've read (and sometimes this is my problem, I read too much!!) depression has a lotttttttt to do with CFS and Fibro, but people would rather not be diagnosed as "depressed." :\ But, like you said, the anti-depressants helped! So, if people really looked at their lives and saw their stresses... I bet that would help, too!!
We do need more research, especially for Endo. I see all this Breast Cancer research all over the TV -- silly slogans like "Save 2nd Base" and I can't help but think to myself.... Well, I understand it's cancer, and it's your boobs... but this is our reproductive organs!! We deserve a cool slogan, too.
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Post by Tiff on May 1, 2008 10:01:44 GMT -5
LOL Cass i guess I wrote that wrong.... I have been told by a few people including my mom that she wonders if I have Chronic fatigue Syndrome. I have heard about it but do not know much about it. Yes I get tired, and yes sometimes it makes it real hard for me to be motivated to do any thing, but does that really describe CFS? I was more asking how is it diagnosed and what are some for sure symptoms of it. To me being tired is nirmal and never thought dif. of it until my mother and a friend bringing it to my attention.
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Post by JackMcFarland on May 1, 2008 11:04:06 GMT -5
Um, well, Drs diagnose it when they can't figure out what else is wrong. So, there is no blood test or anything... that I know of.
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Post by italialynn on May 1, 2008 11:04:17 GMT -5
I was diagnosed with CFS because I had a really high Epstein-Barr titer (it was done a few times over the span of a month). They 'say' that the virus caused my viral meningitis and subsequent CFS. Who the hell knows...I've almost given up faith in doctors. All they know how to do is prescribe pills and cut you open. I know this is a little off topic, but I found it hilarious(long story short)...when I went to a new Dr on Monday for my sinus infection, he told me I was underweight and that's where the root of my problem is (which I'm clearly not, 5'4" and 115lbs) and needed to go on a protein supplement he sells, then asked if I was depressed (because apparently I looked depressed..I was sick!!!!) and if I needed to go on medication for it, then wanted to do 534 blood tests to check everything. Plus sell me HIS vitamin supplements, because my organic, otc supplements "don't work." Then he proceeded to tell me that the only cure for Endo is Pregnancy (I almost jumped across the room and choked him)and that diet and a healthy lifestyle would not do anything for it...all this FOR A SINUS INFECTION. I couldn't believe it!!! LOL!!! Oh vey.
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Post by Tiff on May 1, 2008 11:17:42 GMT -5
Wow, italianlynn what a cooke. He is just triyng to sell his products to you. What an aweful Dr. who cares more about making money then treating your issues seriously. I agree I feel Dr.'s just want to perscribe pain killers and pills and say you are cured. Pregancy a cure, LOL what a joke. I just had a baby 5 months ago and am right back to where I started before I got pregnant. tess- wow if they just can't figure nothing else out so they diagnose CFS that is crap. Yeah no wonder I have not brought it to their attention. I dont want to put ideas in their head.
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Post by cass on May 1, 2008 18:06:13 GMT -5
fatigue is also a big factor along with other associated syptoms of fibromyalgia. i am currently undergoing tests for rheumatoid arthritis (second time in 4 years) am expecting it to come back negative yet again (fingers crossed it does) but im going to ask my dr today about fibromyalgia. i have constant arthritic like pain, muscles stiffness and joint pain fatigue the list goes on. will keep you posted.
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Post by JackMcFarland on May 1, 2008 18:34:20 GMT -5
im wondering the relevance of endo and hormones to joint pain, though. i'd like to see if a rise or drop in estrogen can affect ones glusocamine....
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Post by cass on May 2, 2008 4:21:24 GMT -5
soooooooo i went back to the GP to get my results from the blood tests and xrays as he wanted to rule out rheumatoid arthritis. and that he did. negative rheumatoid factor and no signs of dengenrative bones from xrays.
However, my ANA levels (antinuclear antibody) test which can be performed on a patient's blood sample as part of the diagnostic process to detect certain autoimmune diseases was interesting. normal patients should have a level of <160 mine is 640! it came back with a homogenous pattern Homogeneous - total nuclear fluorescence due to antibody directed against nucleoprotein. Common in SLE (lupus). coupled with my symptoms and my ANA my dr has referred me to a specialist as he thinks it could be Lupus? but i need to see a rheumatologist now.
Grrrrrrr! im in so much pain majority of my pain is in my hands (fingers, knuckles, wrists) and my feet and knees.
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Post by cherry on May 2, 2008 7:04:17 GMT -5
Hugs Cass, hope you get some relief soon
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Post by JackMcFarland on May 2, 2008 12:49:36 GMT -5
oh wow cass! lupus could explain a lot for you tho!! good luck! please feel better!
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Post by cmbohne on Jul 5, 2008 9:08:06 GMT -5
I also have had a list of immune system disorders. I was diagnosed at the age of 9 with juvenile diabetes(which I believe I had it from birth, but back then, they didn't test like they do now). I spent years and years with up and down blood sugars, like a roller coaster. Stupidity and hanging around the wrong people, I tried some heavy drugs that caused my kidneys to fail at the age of 25. I went on dialysis for 7 months, and received a kidney/pancreas transplant 11/2005. After my transplant, I started having alot of painful periods and major problems with trying to conceive after they gave me the green light. My husband and I decided to see if there were more problems. I had an HSG done to see if my tubes were clear, and they were. About 6 months later, I had a lap done to see what the problem was. I was diagnosed with endo. My left ovary is "spiderwebbed" with endo and I have a thick band under my cervix. I tried clomid (50 mg) for 3 cycles. The first two were fine, but the third cause excruciating pain. I found out that sometimes hormones cause the endo to kick up harder and cause more adhesions. We are still TTC as of now and I have an extremely low immune system due to being on immunosuppressive drugs for my transplant. Anyone else out there had a transplant(of any kind) with the same problems? I haven't found any people on messages boards with similar problems.
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Post by orchidlily2222 on Aug 8, 2008 13:57:23 GMT -5
talk about a lightbulb moment! all these years I just thought i was unlucky in health...having so many random things wrong with me....to see now the interconnected link through auto-immune deficiencies makes it like a whole puzzle just connected together! I've had chronic rhinitus that required 2 surgeries...psoriasis that has increased in fervor and frequency over the years acting up most in the last year and peaking now as is my cramping/menstrual/potential (no lap yet) endo issues are (luckily at my hairline mostly and i have very thick hair to disguise it but still rampant at present)....and i was just thinking the other day when my new dr (repro endo) asked me if i had any more health issues and, dummy, out of embarrassment i left out my increasingly worsening psoriasis...hmm...i'm sure it's not relivant...but what if it is...now i'll definitely mention it next time i see him...I have also had boughts of asthma that have come and gone and having recent shortness of breath lately ...its so strange and yet obvious when it all comes together...auto-immune...how could i have never connected it all before!
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Post by orchidlily2222 on Aug 8, 2008 14:09:50 GMT -5
also...has anyone with all of these auto-immune issues been able to link it back to poor prenatal care or anything like that? or issues prenatally? i just am curious...and not at all scientific in knowing if such a thing could have a linkage....I just wonder as I was adopted from Bogota, Colombia at 4 months of age and have no knowledge of my family history or prenatal care but know there is a potentiality that I had poor prenatal care...just a curiosity...
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Post by orchidlily2222 on Aug 8, 2008 14:16:25 GMT -5
and almost forgot to mention...also of course i have a history of ovarian cysts, ibs-gastro issues, and allergies (seasonal, pennicillin)...just to finish off the list
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