Tuesday, 30 August 2011

Pregnancy Week 21: Improvement of CFS with Pregnancy

It is week 21 of my pregnancy and I am finally feeling the effects of the energy boost that my specialists have told me would happen around this time. It makes me feel alive that I can now get out into the garden and sit in the sun for a while or sit in the soon to be nursery and work out what I have been given and what I still need to buy.

I am however a bit disappointed though that some of the other things they have said would happen are not quite as promising as they seem. I have been told that 1/3 of pregnant women improve with pregnancy, 1/3 stay the same and 1/3 can get worse. I am now finding that is true but only in the context of being pregnant and does not take into consideration how these women felt postpartum (after the baby is born). It has been found that 1/3 to 1/2 of these women were worse after the baby was born with only 1/5 feeling they improved.

Here is a really good article for further reading (Quotes below) - Chronic Fatigue: Implications for Women and Their Health Care Providers: Chronic Fatigue Syndrome During Pregnancy, Childbirth, and the Postpartum Period: http://www.medscape.com/viewarticle/576986_6
The most comprehensive study to date investigating the reciprocal relationship between CFS and pregnancy was published by Schacterle and Komaroff in 2004.[1] Through a retrospective self-reported questionnaire, the investigators compared outcomes for 86 women with a cumulative total of 252 pregnancies that occurred before or after the onset of CFS. In "many cases," pregnancy predated the time of data collection "by several years."[1] The investigators found that 41% of women experienced no change in CFS symptoms during pregnancy, 30% noted improvement of symptoms, and 29% experienced a worsening of CFS symptoms during pregnancy.[1]

CFS experts Nancy Klimas, Lucinda Bateman, and Charles Lapp report slightly different findings in clinical practice. Their reports are based on relatively small numbers of women with CFS whom they have followed throughout pregnancy, accentuating the current scarcity of evidence-based information. In the approximately 20 women Dr. Klimas followed throughout pregnancy, improvement in CFS symptoms during pregnancy was almost universal, in some cases to the point of total remission, despite typically more severe early pregnancy nausea and vomiting requiring antiemetics used during chemotherapy.

Postpartum Recovery with Chronic Fatigue Syndrome
Again, there is no scientific evidence that comprehensively defines the relationship between CFS and a woman's experience during the postpartum period. Schacterle and Komaroff found that 50% of patients surveyed reported worsening of CFS symptoms, 30% reported no change, and 20% reported improvement during the postpartum period.[1]

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. Dr. Lapp reports a similar incidence in worsening of CFS symptoms in one-third of his patients who had given birth.[48]

1.Schacterle R, Komaroff A. A comparison of pregnancies that occur before and after the onset of chronic fatigue syndrome. Arch Intern Med. 2004;164:401-404.
48.Lapp C. Childbearing and CFIDS: Making a difficult decision. The CFIDS Chronicle. 2000;Summer.
Even a factor of 10% can make a difference when deciding on whether to have a child with ME/CFS. Don't get me wrong, I am hoping to be one of the 20% that report improvement, but getting the full story up front would be good rather than the rose coloured glasses.

I keep getting the impression that you have to research every part of this illness in order to understand what the position is rather than just rely on the specialists.

It is good that I finally have the strength to do this but most days I cannot read let alone analyse papers. I am also very lucky to have such a supporting husband and family and that because of my further research understand and can be there for me in worse case scenarios.

Monday, 29 August 2011

Welcome to my long foggy road and a little about me…

Hi my name is Allie, I nearly 39 years old and have been suffering from ME/CFS for nearly three years. I am now pretty much housebound with the occasional outing. I used to work as an IT Specialist and I realise now I worked way too many hours, ignored symptoms of sickness and pushed myself way beyond my limits. I ended up getting glandular fever which my then doctor misdiagnosed as tonsillitis and kept travelling interstate for work and pushing through it.

My next doctor kept diagnosing depression and placed me on anti-depressants. As I was still complaining of fatigue she kept raising the dosage. By this time I was on income protection and my insurer wanted me to see Psychiatrist who changed my medication to include an energy booster and also upped the dose. This made my mind think it could do things when my body clearly couldn't.
The funny thing was that I was seeing a psychologist who had been treating me on and off for other unrelated issues for years. She kept writing to my doctor and the Psychiatrist and telling them that I was not suffering depression and was the most together I had ever been. Apparently her opinion as a Psychologist did not mean a thing.

Eventually after some pushing and even a referral letter from my doctor stating that she thought my fatigue was related to depression, I finally got in to see a specialist professor in ME/CFS. Within half an hour he had diagnosed me as a classic ME/CFS with FM patient. Knowing I am not losing my mind has made a huge difference to my outlook. I have also been diagnosed with Cyclic Alternating Pattern (CAP), a sleep condition that does not allow me to go into a deep sleep for more than 20 seconds at a time. At the moment I sleep 12 hours of a night and have up to two 20-30 minute naps per day.

I have also been seeing an exercise physiologist who has me on a CBT/GET program. While this has helped alleviate some of my frustration, I have not been able to progress far on the graded exercise part. If I exercise I can do less in a day than I can currently manage or I end up in bed for three to four days.

I was fortunate to meet my now husband last year. He is a god send. He allows me to talk when I need to and tells me to slow down if I start to do too much. He can also tell a lot earlier than me if I am going to crash. We have had to get someone in to help with the housework and I order all my groceries online as my husband can't keep up with that as well as work full time.

After much deliberation we decided to try for a baby. Neither of us have children and time is running out for me. Who knows how long this illness will plague me and if I will be any better or worse in another couple of years. We know it won't be easy but we also know that life does not wait for ME/CFS to get better. I spoke with my specialists and I have their full support. My husband will take three months off when the baby is born as a carer for me and the baby and I am lucky to have my family as a secondary support.

I came off my anti-depressant medication early this year and I am now 20 weeks pregnant. It hasn't been an easy pregnancy with just about every pregnancy ailment rearing its ugly head - severe morning sickness, indigestion, severe hip pain, palpitations, asthma and worsening ME/CFS symptoms. I am however starting to see the light at the end of the tunnel as they say, and have finally got that boost of energy that they said would come in the second trimester.