03 February 2010

ME/CFS and Pregnancy

ME/CFS and pregnancy

As with many of these blog entries, there is room for this to be added to, and it will be returned to from time to time, especially with advances in knowledge about XMRV, and it's potential contribution/co-morbidity to ME/CFS.

For many people, it is natural to grow up with aspirations of starting a family, and individuals with ME/CFS are no different in this respect.  Taking into consideration that roughly 60% of individuals with ME/CFS are female, and that the average onset of ME/CFS is within the typical childbearing age, it is essential that individuals with ME/CFS (and, of course, those supporting them) are well informed and well prepared before proceeding with a pregnancy.  Yes, pregnancy is a physical feat for the human body at the best of times, so there are added challenges to meet and overcome, but it is certainly possible.However, preparing for pregnancy for an individual with ME/CFS include many considerations which may not be issues for individuals without a ME/CFS diagnosis.

Up until this point, it has been suggested that there is no evidence of inheritance with ME/CFS, or that a diagnosis of ME/CFS in the mother would incur damage to the fetus. The recent findings of XMRV and it's potential contribution/co-morbidity to ME/CFS, however, XMRV is "thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air". (Whittemore Peterson Institute). The Whittemore Peterson Institute recommends that individuals speak with their physician about XMRV and what safety measures might minimize possible transmission of this retrovirus. (2010).  It is integral to note at this stage that very little is currently known about XMRV, and as more is learned, knowledge and advice will be refined.  It is essential to stress that if you have concerns, talk to your physician.

The decision to raise children is one that needs to be made by both the mother and father, and is not one that can be made overnight.  There will be issues such as if the mother has ME/CFS, does she work, and if so, is it likely she will need to give up work early in the pregnancy? If the father has ME/CFS, how will he be able to support the mother during pregnancy? It is also wise to think in the medium term about whether it is likely one parent will be able to return to work, what needs to be addressed in terms of in-home maintenance (is it realistic to employ a cleaner), are there family and/or friends around who are able to help with some of the day to day tasks of family-hood? On the flip-side of this, not everything can be planned, some things will fall into place as and when they happen, and things will crop up that have not been considered.

In terms of preparing for pregnancy, including limiting alcohol and smoking, and getting a balanced diet, individuals with ME/CFS may also need to address any prescription medicines, herbal supplements or any other pharmacuticals they may be using.  This must be done in consultation with the appropriate medical professional, and individuals should not stop taking any medicines without medical advice. Some discussions may need to take place around risks some medications may pose during pregnancy, and what alternatives may be available, or weighing up the risks and benefits. It is also an idea to begin discussing things such as pain management during the pregnancy and especially during birth.

With regards to conception, some considerations need to be taken into account.  It is advised that some thought and planning goes into preparing to have sex, despite this sounding terribly unromantic!  Because sexual intercourse involves a high degree of physical exertion, it may be necessary to plan for a substantial time to rest afterwards.  Another issue to take into consideration is pain, and ensuring that the environment is set up to make things comfortable, with the use of pillows, cushions, and heating, ensuring the experience as enjoyable and pain free as possible.  It is also worth thinking about what time of day an individual experiences the least pain and fatigue, and also (with forethought to giving birth), what seasons are well/not well tolerated, knowing that it's realistic to experience a  'crash' after pregnancy.

During the first trimester of pregnancy, dramatic hormone changes can cause high levels of fatigue and nausea. For some mothers-to-be, this will pass as they enter into the second trimester, whereas for others, it may last the full term of pregnancy. By the third trimester, and especially in the final weeks of pregnancy, is often the hardest part of pregnancy. There are extra demands on the body from an increasingly growing baby, and extra weight to carry around, which all contributes to higher levels of fatigue.  It is important to rest as much as possible to help manage the physical fatigue, and prepare for giving birth.  It may be beneficial to participate in pre natal classes and get advice on relaxation techniques to help the process of giving birth.

When the time does (finally) arrive for birth, mothers with ME/CFS will tire quickly in labor, and may experience an increased level of pain. It is important that mothers with ME/CFS have access to adequate pain relief, and kept well hydrated.  'According to Dr. Bateman, stress and exhaustion cause the autonomic nervous system in a CFS patient to become more dysregulated and "almost chaotic," precipitating the likelihood of relapse. Bateman advises measures like maintaining vascular volume with intravenous fluid and pain and stress reduction techniques during childbirth to help prevent or moderate this response' (
Again, it is beneficial to know and discuss pain management options well in advance of labour and to have a plan (though realizing that in emergency situations, events may have to deviate from the plan in some cases).

It is common for a relapse of ME/CFS symptoms to occur post partum. 'Dr. Klimas observed that her patients with CFS typically do well postpartum until 3 to 6 months after delivery, at which time a relapse in CFS symptoms typically occurs, and is oftentimes severe. Dr. Klimas hypothesizes that relapse at this time may be related to physiologic reduction in red cell mass and blood volume that increased in pregnancy, and/or to the cumulative stress of interrupted sleep and demands of caring for an infant' (2007, retrieved from http://www.medscape.com/viewarticle/576986_6).  As with all ME/CFS relapses, early planning can help prepare the family for this occurrence. There are many practical steps which can be made to help minimize energy expenditure for individuals with ME/CFS caring for newborns and adjusting to a new addition to the family.  These may include setting up the nursery with as many things in one place as possible, such as warm water in a thermos, and having a nappy bucket just outside the door, to minimize walking distance.  If the house is two storied, have a changing table set up on both floors, and use a stool or chair when doing nappy changes, and have a comfortable chair next to the baby cot/bassinet for feeding times. Please feel free to comment or add to this post.

References:

Lapp C. Childbearing and CFIDS: Making a difficult decision. The CFIDS Chronicle. 2000;Summer.

Links:

Retrieved on 03/02/2010 from http://www.medscape.com/viewarticle/576986_6

Retrieved on 03/02/2010 from http://www.mecfsparents.org.uk/Pregnancy.htm

Retrieved on 03/02/2010 from http://www.zimbio.com/Fibromyalgia/articles/13/Sex+Chronic+Fatigue+Syndrome

14 comments:

  1. Thank you so much for writing this article!! =)) Just what I needed. =)

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  2. Very Interesting article. Im about to try to conceive my first child and Im very apprehensive and wondering if Im mad. Luckily I have an amazingly supportive husband. I worry about the extreme exhaustion and replapse alot.

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  3. Based on the (brief) reading I did for this article, and my own experience, not with pregnancy itself, but with other 'challenges' I have faced in my time with ME/CFS, I believe that some of the key things is planning, preperation and setting up strong support networks. Best wishes.

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  4. My daughter, who has lived with this illness since she was a sophomore in High school (she's now 33), is expecting her second child in May. Her first child is 7 years old and is very healthy so far. We, of course, are painfully aware of the likelyhood of a genetic link, especially in light of the reasearch comfirming this in recent years. (I've had this illness since 1983.) I do, however, have a son with no indication of this illness (he's almost 40.) Issues popped up during her first pregnancy which were probably ME/CFS related. For example, she has always had low BP witg this illness, and when her BP went up to NORMAL, her doctors didn't realize that this was, for her, pre-eclampsia. Her last few months were very bumby, but my grandson is bright, athletic, and wonderful. My daughter breast-fed for a long time and felt much better from childbirth until she stopped breast-feeding, but at that point she relapsed. She and her husband have lots of support - these are the only grandchildren on both sides (although I have wonderful step-grands, they are grown up) and both sets of grandparents are here in Atlanta. I don't know if she would have made a different decision if XMRV has been found and independently verified before she became pregnant, but I will admit that I'm glad that she was already pregnant when XMRV became known. Best wishes to all who are making this difficult decision .

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  5. Please excuse the typos - I'm wiped out but I did want to comment.

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  6. i'm 22 and pregnant with my second child.. have had cfs for about 5 years. i feel like doctors around here atleast don't know anything about it! reading jenkins' post made sense, preeclampsia was not detected until i went into labor with my firt born (which caused complications with both her and i for a week long stay in the hospital, her in nicu).. that helps to let me know to ask my doctor to really listen to me if i feel like i have it again this time. thanks :)

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  7. As a CFS sufferer for just over 16 years, I have been blessed with 3 beautiful children. My eldest was conceived while I was taking an experimental treatment, and my specialist was amazed that I was able to fall pregnant at all. It wasn't easy being pregnant, I ached all over, vomited all the time and was so totally exhausted, but unable to sleep. Trips to the hospital to be re hydrated were frequent. I too have low blood pressure and preeclampsia was also an issue for me in my second pregnancy. As I was aware of my blood pressure and so was my GP, it was detected early enough and the baby was delivered 3 weeks early by c-section.
    My experience post partum was opposite to what Dr. Klimas had observed. I found that while I continued to breast feed, I remained in a kind of "remission".
    I experienced what I believe to be "normal" sleep deprivation, not the awful fatigue that regularly plagued me. I actually woke refreshed after a block of 3 or 4 hours sleep. The pain that I experienced in my muscles and joints subsided, and for the first time in a very long time, I had energy to do regular house work.
    You do need to be vigilant, get your iron levels checked regularly, sleep while baby sleeps, and accept all the help that is offered. It is not easy, but it is well worth it.
    My eldest will be 11 this year, and my health continues to be an issue. There are times when being the mother of an 11, 9 and 5 year old are more demanding than the pregnancies, but the joy they bring to our family is worth the trials that living with CFS brings to our life.

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  8. Pauline, can I use your quote (anonymously) on saying that the fatigue from CFS is more severe than that a healthy person likely feels on 3-4 hours sleep? This is very good for putting CFS fatigue in perspective, trying to get people to understand that it it not just the afternoon yawns, that your body feels like it is tearing itself apart. Your word as a person who has looked after an infant would probably make sense to a lot of people. I think healthy people sometimes think that a person with CFS and no family to look after must have it much easier than them, and not really know what it's like to feel tired. Clearly, this is not the case!

    Thanks for posting.

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  9. this type of information on pregnancies, is quite good, and we all need to have a minimum knowledge in these fields, and more if some day we hope to become parents

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  10. I had some problem with my first pregnancy, i wanted to be pregnant and have my first baby, buy my husband had erectil dysfunction problem, so we decided to buy viagra and after that he turned very strong and could get powerful erection after this medical treatment. Thank to this i have two litle and beautiful girls.

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  11. when I see this blog a name flashed into my mind, it is Dr. Morice ..
    It 's a man a much more in woman's issues ..
    I believe that all women should go to learn mybabydoc.com solution of their problems ..

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  12. I got m.e. 12 years ago and got better over those years. Last year I got pregnant and it was great! I felt better than I had in the whole 10 years before and did not need to pace or anything! This continued until 5 months after the birth- I almost thought I was cured! But then it hit... THe biggest relapse I have had. I am still ill now (5 months on) although getting better again. BTW the relapse was not as bad as the orignal illness but tricky cos you need to care for a newly crawling baby too! I think hormones (for me depoprovera) were a cause of my illness and this may explain an improvement during pregnancy. I am also still breast feeding so there was no relation to my health in terms of this. Polly

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