I have not been diagnosed with CFS, but when I stumbled on it last night it seems to describe to a T all of the bizarre symptoms I've been experiencing and trying to tell all of the specialists I've been referred to. They all look at me like "are you serious" and secretly look around for the Candid Camera because it must be a joke. Well, I WISH it was a joke, but my symptoms are very REAL and debilitating and NOT pregnancy-related (even my OB agrees that something's wrong, she's never heard of anything like this in all of her years as an OB).
I am 24 1/2 weeks pregnant with my 3rd baby and all of this started when I had a cold that just wouldn't go away in November (I'm at 4 1/2 months, so I haven't reached the 6 months minimum mark yet, but I'm on such a downhill spiral that I can't see this miraculously going away in the next month and a half). The cold symptoms eventually subsided (I was in the first trimester and not given an antibiotic), but I have felt completely worn out since. This goes well beyond tired! I used to be a real life Martha Stewart and could dance circles around everyone energy-wise. Now, I can barely take care of myself, let alone my 2-year-old and my body still feels like I'm doing too much, when I'm barely doing anything at all.
I have 3 major debilitating symptoms besides the fatigue that are so bizarre but actually have a technical term with CFS! The first is that I used to be able to go to bed early if I felt tired or overdid it, get a good night's sleep and get to start again with renewed energy the next day. Not anymore, now I feel like there's a hole in the bottom of my energy tank and sleep doesn't give me energy anymore, no matter how much I get. ("fatigue" and "unrefreshed sleep")
The 2nd is that my body no longer tells me right away when I'm overdoing it, and overdoing it now is the slightest little bit of energy expended, nothing major, just day-to-day little things adding up. I feel it THE NEXT DAY that I overdid it - a delayed reaction - and every day I feel like I'm constantly paying for energy I've already expended days/weeks ago with ZERO left over for today - an compounding energy "deficit." ("postexertional malaise")
The 3rd debilitating symptom is that I can no longer stand even long enough to peel an orange over the garbage can without feeling like I'm going to collapse, pass out and fade into oblivion. I can't take a shower, go to the grocery store, do a load of laundry, cook dinner, or basically do ANYTHING anymore. ("orthostatic intolerance")
I also have some of the other symptoms, but they aren't debilitating to me.
I have been to an Internist with a specialty in cardiology, 3 endocrinologists, a pulmonologist and my OB, and every one of them has told me their baffled and have never heard of anything like that. I'm surprised I didn't get a referral to the psych ward! Everyone but my OB (thank God she's sane at least) keeps trying to pass my symptoms off as pregnancy-related, but I've been pregnant 3 times now and have known A LOT of pregnant women, and NONE of them have ever had any of these bizarre symptoms. I have been tested for everything under the sun, and on paper I look fantasic. In reality, though, I feel 70-85% dead every single day.
I'm not depressed (although this illness is certainly taking it's toll on me now) and love my life. I want it back! I haven't actually been diagnosed with CFS yet, but I haven't found anything else to explain my bizarre symptoms (that actually have technical names!) or how I could go from being wonder woman to barely being able to take care of myself in a just a few months. I'm pretty good normally at just sucking it up and pushing through whatever I need to, but now if I push myself, I am a whole lot worse for days/weeks to come. This isn't normal for me, but it seems to be the norm now.
Has anyone been pregnant with CFS? Will it get better once the baby is born (not due until the end of July)?
Thank you! I'll mention that to the Internist when I go on the 17th. I'm surprised that he didn't suggest that referral. I've been to every other specialist!
It has been so difficult for me to understand why I got pregnant for the 3rd time and now all of a sudden, my whole life is going to hell in a handbasket because I physically CAN'T do ANYTHING anymore. I'm sure everyone else on this board feels the same way, though. I'm just trying to remain focused on the fact that I now know the technical terms for my bizarre and baffling symptoms so I can talk more intelligently with doctors. EVERYTHING just seems to fit with the CFS diagnosis, although I'm really hoping it's NOT CFS!
Just letting you know you are not alone out there! I am a 23yo, pregnant with my first child (due end of July also) and I have suffered from cfs for 4 years now, so I completely understand each and every symptom you are feeling. One thing I can say that might offer some help to you is that my symptoms have never been worse since I have been pregnant. I can't hold down a full time job now (only 2 days a week which is a huge struggle), I am sleeping in excess of 12 hours a day and I wake up feeling like a truck has run over me or like I have the worst hang over imagineable, add on still suffering from morning sickness, horrible anxiety and you have my life at the moment.
After spending 4 years of my life (during a time when all my friends were out having a good time) searching for various treatments for cfs, I am able to offer a little advice. But firstly you need to understand that there isnt just a tablet you can take to get rid of it, it involves a huge physical, emotional and mental lifestyle change. I have taken many medicines, had many treatments (both alternative and modern) and can definetly say that alternative medicines are much further advanced in the field of CFS than modern medicine is (ie naturopaths rather than doctors). Stress is the main cause of my day to day struggles with cfs and so it is SOOOO important to treat this first (which I can understand is hard with kids). Yoga, pilates, meditation and relaxation are fantastic for cfs and helped me immensely before I fell pregnant. I took some counselling sessions, saw a psychologist who taught me thought field therapy (fantastic for anxiety which can be created from cfs) and had weekly jin jhin jiutsu sessions (like massage yet gentler and works on blocked energy meridians) which I still have whilst pregnant. I felt for the first time in years that my life was getting back on track (until baby came and so did the symptoms).
one more thing: Don'y expend energy going round in circles trying to understand why this is happened to you and why now, use the energy on healing yourself and searching for the root cause of your illness (ie stress, difficult childhood etc, it might be the tiniest thing that has caused it, however I believe there is an emotional cause which triggers our physical illnesses).
Last edited by moderator2; 04-20-2007 at 08:55 PM.
Check with a sleep specialist. I had sleep apnea which was aggrevated when I became pregnant from a mild case to a severe case due to the added weight gain and way the child rested on me. Good sleep hygien will help some, but if it is sleep apnea only a sleep specialist can handle it.
Sleep specialist are well versed in dealing and treating fatigue.. because CFS is often a side effect or symptom of a sleep disorder inducing long term sleep deprivation.
If you have sleep apnea it is hereditary and can be past on to your children. Sleep apnea in children is most readily identified by snoring.. but snoring is not necessary for you to have sleep apnea. Sleep apnea is also strongly suspected as an underlying cause in many SIDS cases. Some facts to think on..
2 out of 100 children have sleep apnea.. less than 1 in 5000 are diagnosed.
I have severe sleep apnea.. so does my four year old son. If I have another child they will be tested at the age of 6 mo. You can test and treat sleep apnea as early as 6 months.
If we learn by our mistakes, I am working on one hell of an education.
Sleep apnea testing is preformed via a sleep study. You go to a sleep specialist. He will or will not recommend s sleep study depending on your physical examination and consultation.
The actually sleep study is a shot free zone.. my four year old keeps wanting to go back for another sleep over.
1) They hook you up to a finger tip O2 sensor. This monitors your O@ concentration as you sleep.. checking for hyponea.. shallow breathing sleep apnea.
2) Many leads are attached by silicon gel to your skull to read brain activity, this allows them to determine when you wake how often and too what stage of sleep you go.. This sucks if you have long hair... but does not hurt you in any other way.
3) You have respiratory and heart rate sensors applied to your body. TO verify if and when you stop breathing or if you have sporadic arrethmias and such.
4) Movement sensors attached to your legs, face, and arms... test for restless leg syndrome.
Then you sleep under the watchful eyes of a computer and IR camara where the sleep specialist nurses and technicians individually watch you for any anomolies. You will have to do this twice if you have a sleep disorder like hyponea of sleep apnea. The first shows the disorder and give the sleep specialist a baseline to work from the second tests how well a CPAP device corrects the problem. The CPAP is just a mask that blows pressurized air through your mouth and nose to aide in maintaining an open airway while you sleep. None of these evaluation techniques or the CPAP will harm you or your child in anyway.
My whole family including my 4 year old have done this at least twice.. I have done it four times.
If we learn by our mistakes, I am working on one hell of an education.
I have CFS, FM, hypothyroidism, polycystic ovaries, endometriosis and I'm 34 (I was dx'd at the age of 19) My husband and I have been married about a year and a half but together for 4 years. We would like to start a family, ideally 2 children but I'll be happy with just one! Anyone have advice for CFS while pregnant? I have been unable to work since 5/01 and I'm seeking disability but feel like my time is running out to have children. I know CFS can get better or worse during and after pregnancy.