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Crohn's 17 weeks pregnant and just diagnosed with Chronic fatigue syndrome :-(

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Posted 11/19/2009 1:12 PM (GMT 0)
Hi Everyone,

Just an update I had tears or joy and sorrow today when i was diagnosed with Cronic fatigue syndrome. For the past 2 years I have been to over 15 different doctors because I knew in my gut that something wasn't right and although I had active mild/moderate crohns, many of the symtoms didn't make sence or match the severity of my crohn's.

My symptoms were

extreme fatigue
extreme joint and muscle pain
blurred vision
gut pain
chronic constipation
anxiety/depression
bloating
chronic vomiting
daily fainting/dizziness


does all of that sound like Crohns'???? I kept telling the doctors it felt different than when my crohn's was flaring but nobody would listen to me which often lead to me crying in front of them pretty much begging to trust my opinion and judgement because I knew my body.

God was on my side through the whole experience and the last straw was when I kept fainting and although I am so used to being sick and the symptoms I was worried because i am pregnant and didn't want to have a big belly one day and collapse and hurt the baby. I made 'yet another' appointment and the doctor was so frustrating and actually got into an argument with him because he wouldn't listen to me and would cut me off and told me "you have migranes" after I burst into tears with frustration i left and prayed to god that i wasn't making it up and needed to find someone who would believe me and help me.

As I drove I tried the number of a popular doctors office and as i rang the best doctor who NEVER has fee appointments just had a cancellation and drove their 10 minutes later. She listned to me and took my blood pressure and was very worried, and reffered me to a cardiologist. I booked in with the cardiologist who could only get me in 6 weeks later which was a bit disheartening because I had fainted again so I rang the next day to see if they could put me in if there was a cancellation and in 1/2 hour they rang back to fit me in the next day!

When i saw the Cardiologist he listened to my whole story including my opinion, he also threw out his ideas and what he thought I might have which i appreciated because i hate when doctors keep to themselves what they are thinking. He sent me to get a full blood tests (which i thought I had been getting the whole time I would demand 'full' blood work from doctors and also had me do a 24 hour blood pressure and heart monitor. I was diagnosed after a week with him saying he is 1000% sure of severe chronic fatigue syndrome. He was also annoyed on my behalf because my blood was so poor and there were things like calcium and many other things which were so low he was worried about the baby.

My point of this long winded story is that for so long I felt like I was going crazy because I knew I was very unwell and it was not being treated or recognized and also it has been a huge pressure on my marriage. I never gave up and even though EVERYONE said it was just Crohn's or 'I don't know' I wasn't going to let it go. It was because of this site that I was determined to find answers and honestly believe that I wouldn't have been so inspired if it wasn't for all of you and this site.

Love you all and thanks again p.s I'm actually going to have a party in celebration of the fact we know what is wrong now. It has been such a long road and for the first time in a long time I feel like i can plan a future because i feel i have control again and that is so exiting for me.
Posted 11/19/2009 2:08 PM (GMT 0)
Cayer, I'm so glad to hear you finally know what's going on! It's extremely frustrating to know that something is wrong with you, and yet no one with the power to change it will believe you. I'm just astounded that the doctors who dismissed you couldn't do something as simple as check your blood. Since when is a diagnosis given without the proper tests?

I hope you're able to begin getting better now, and I wish you the best of luck in your pregnancy. Please, keep us updated.
Posted 11/19/2009 6:58 PM (GMT 0)
So know what will they do for you with Chronic Fatigue along with the Crohns? Is ther med's for both?
I'm glad they figured it out and I do believe you know your own body! Sad that we have to fight for people to listen sometimes. I wish you and Baby well:)
Posted 11/19/2009 9:42 PM (GMT 0)
Glad you were persistent and have your Dx. Sounds like these new docs will do everything to take care of you and your baby. Hope you have a healthy and happy rest of your pregnancy!
Posted 2/1/2010 12:06 AM (GMT 0)
I recently was diagnosed with moderate chronic fatigue syndrome after two years of doctor's visit. I am 23 married with one child and this disease has brought so much pain to my life. I was wondering what you do to deal with it and if there is anything your doctors prescribed? Also does pregnancy lessen your symptoms?
Posted 2/1/2010 12:53 AM (GMT 0)
Most of those symptoms could go with Crohn's, to be honest. But I would've thought some of them would have raised a red flag all the same though -- obviously not. Anyway, I'm glad that you eventually found somebody who took you seriously; it is incredibly frustrating when doctors don't seem to care about you.

Good luck with your pregnancy and for the future.
Posted 2/1/2010 2:21 AM (GMT 0)
It is tough to keep looking for the answers when docs don't believe what we know to be true. The first question I ask a new doc is "Will you read my history and will you believe me?" I'm proud of your persistence. turn
Posted 2/1/2010 11:44 AM (GMT 0)
Hi Everyone, Just thought I would give an update on my situation and answer some questions while i'm at it :-)

Im currently 27 weeks pregnant and while I would like to say I'm doing well, i'm really struggling and not in anyway better so far. Good news is that I found a new doctor in December and he has been a god send! I think he was a little overwhelmed when I first consulted with him because I got every doctor and hospital who has seen me fax copies of my history and also wrote up my OWN 4 page 'illness resume' which included periods of sickness, remission, drugs, and also my personal description of how I felt at that time about my quality of life and happiness of my medical care so i think he knew 1) that I was serious about getting some help 2) That if didn't show some effort he knew I would just find someone else ha ha so I think I am like a project to him (which I think is good motivation for him to take care of me ;-)

He was able to start helping treat me for the 'body pain' I am getting which he and my physician have diagnosed as fibromyalgia which I am now taking an anti-depressant which apparently helps with the aches and pains Dothep 25mg a day, which i am still waiting on to work (hopefully in the next week or two)

He has changed the Imuran I was on to 6mp which I am finding may actually be helping a little but but his main goal is to make sure that I will qualify for Infleximab straight after the baby is born.

There were small changes I could make after I found out I did actually have Chronic fatigue and that was to stop pushing myself to the end-th degree every day with trivial tasks and instead save that energy for light walking which I found made a huge difference to the fatigue and also the fibromyalgia.

I have painfully restricted myself to 2 Panadine forte daily at night when my pain gets really bad and was recently told that I have to be off them 6 weeks before the baby is born or else I will have to have the baby born in a public hospital near me (which doesn't have a great reputation but specialize in 'drug addicted babies') I was so stunned after I was told that what I was taking was safe for the baby is actually not!

I feel more than annoyed and upset that over a year ago I asked my then Gi his honest opinion about having another baby while my Crohn's was active and he and all the gi's I spoke to said so confidently YES and I suppose that was also because they didn't believe how much I was in fact struggling. I also asked in depth about needing to take drugs to manage and maintain the disease he said that as long as the mummy is happy and well the baby will be, so if you need to take pain med's its better for the baby than mummy be uncomfortable and distressed and same goes will drugs like imuran etc to control the disease. HOWEVER all I have had is trouble! It has been a nightmare getting prescriptions for the pain killers because i'm pregnant, nobody but my current GI was willing to try different drugs to help the Crohn's and fibromyalgia because they all said that the "miracle of pregnancy" helps Crohn's and will naturally put me into remission...well i'm sorry but that is bull and while it may be the case for some woman I don't think they should tell patients this with such confidence if it is not always the case.

The end of the battle is now in sight so I am trying to stay positive and while I have had some HUGE struggles with my husband we are also working through the stress of it all to look for 2 great things 1) remission 2) a beautiful baby girl!

I am glad that I was so stubborn and confident in knowing my own body that I pursued answers and for everyone out there that is wondering if they are really getting the care that they need just know that you should never have to cry after a hopeless consult with your doctor and if you are, your probably right that they are not either listening...or believe what they hear compared to what they see in your tests.

Much Love x x
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