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Fibromyalgia
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Posted 1/15/2011 1:05 AM (GMT 0)
I really need all of you right now. Too much is going on at once. The fibro dx is new, about 3 months.

I've had joint pain for most of my life that the rheumy did not think was fibro. He is right. I took my son to a geneticist this week, because he was dx with Ehlers Danlos Syndrome. Turns out that I have it too. This explains my joint pain, along with a few other symptoms that just didn't seem to go with fibro.

Within the last three days, between my son and I, we have been to see 4 different doctors, in between school (both of us, I'm a full time college student). There are different classes of this syndrome, and the geneticist is concerned that we may have the worst one. This means testing on our hearts and also the blood vessels in my brain. For the brain, I need to go through two MRI's and one MRA.

If this isn't enough, I was called back in for further imaging on a mammogram, and the doctor found a lump in my breast. Now there is another MRI for me to go through, and even more to be concerned with.

Pulled a 100% on my exam at school today! My son's grades are just as good. He wants to go sleigh riding this weekend. Hubby and I are trying to figure out how all three of us can be involved.

I'm really scared, and do not want my family to know just how bad I'm feeling about all of this. I do not want my fibro flare to get worse either. Everything already hurts so much.

Please, any support/words of encouragement, prayer (if you pray) are welcome and appreciated.

Free Spirit
Posted 1/15/2011 2:25 AM (GMT 0)
I'm so sorry to hear of your diagnosis with Ehlers Danlos. I do know that it is a connective tissue disorder that is hereditary, the
collagen in the body goes haywire.

I have scleroderma, an autoimmune collagen disease. It is scary to
learn that you have a potentially dangerous disorder. Take one
day at a time and try to keep positive thoughts. Do what you can do to keep your stress down.

Most breast lumps turn out to be benign, I've had scares in the past and have had biopsies done...everything was benign.
Waiting is difficult, but try to stay positive. Worrying never changes the outcome. Put it in God's hands.

It is good to get your feelings out and to be able to talk about it.
Know we are all here for you! I know this is a very difficult time.

Sending gentle prays and hugs for both you and you son!

Hugs, Robin
Posted 1/15/2011 3:16 AM (GMT 0)
Hi, I went and loked up EDS on the Mayo web site. I came across a picture of someone bending their fingers back really far as in double jointed. I have asked about this type of hyper flexibility for years now because most of my joints bend really fay like that.

It is great that you both are doing so well in school. I am sure it is scary with the diagnosis, I know the feeling. I had it when I was diagnosed with hepatitis C, thought it was a death sentence. It was not, I treated and cleared. That was 3 years ago (actually 4 when I was diagnosed) and I am not anywhere the same as I was.

I am sorry that I don't really know much about the condition but do know that my thoughts and prayers are with you.
Posted 1/15/2011 6:18 AM (GMT 0)
Hi Free Spirit,

Sounds like things are piling up on you. I don't blame you for feeling scared.

I am scared a lot.

What I do to help myself is deep breathing and try to clear my mind on the out breath. If I stick with it, it really helps.

I also tell myself: Don't create stories that are not happening (yet, or if at all) because these stories steal the happiness of the moment. I try to set aside a time to think about issues (worrying, really).

I hope this helps maybe a little.
Sending good thoughts..
Posted 1/15/2011 4:33 PM (GMT 0)
Hi Free Spirit, just wanted you to know that I will be praying for you. I am so sorry about you and your son. We are here for you always and please keep us updated.
Gentle Hugs
Shirley
Posted 1/15/2011 5:21 PM (GMT 0)
Free Spirit,
You are in my prayers. I'm sorry to hear about all this. :( But...congratulations on your test score! That is awesome! :) Thinking of you, and please keep us posted.

Love,
DonniesGirl
Posted 1/15/2011 8:33 PM (GMT 0)
I often wonder if there is a genetic connection with this....my daughter and I suffer with fibro. and GI things too.

praying that things ease up and all these tests come back normal.
Posted 1/17/2011 5:48 PM (GMT 0)
Hi Free Spirit, its me again.

First I would like to say that I am sorry that you had to be hit with this. Being told that you have any type of disorder/disease is hard, let alone being told that you have the serious type.

I work with a very dear person that has this disorder too. She has been thru alot but still keeps going and going. I personally think that her positive attitude is what has helped her thru it all. That and a "nothing is going to hold me back" personality. Her daughter has also been diagnosed with it but the more severe form of it. Even though, she just bought and refinished a new house, and is raising 2 small boys. From what I can see from my friend, and from what she tells me, her aches and pains aren't too much different than what we experience with fibro, lupus , arthritis...she just has to be real careful doing anything that could twist her joints out of socket. Her daughter has heart involvement and she has to have regular checks on it just like you will be doing. The only time I ever saw my friend in a bad way and her daughter as well was when they both got that really bad strain of flu that came around last year.
I know that we all are very different in our aches and pains and our diagnoseses but I am hoping that you see this as a sign that things can still go on for you and that having Ehlers doesnt mean a death sentence for you or your son. please just make sure that he is very careful in gym classes and with sports, she was especially prone to putting her ankles, knees and wrists out of joint (which she found out when she tried to water ski, ice skate and play tennis.) For a long time she just thought that she was accident prone.

Any time you have any questions feel free to ask me and I will ask her. She has had it for very many years and could probably answer any questions or fears you may have.

Please try not to worry and know that we are all here for you in our thoughts and prayers.
Posted 1/17/2011 6:53 PM (GMT 0)
I had to look this up, too.  You sure have a lot on your plate, don't you?  I'm hoping you have the mild form of this illness.  It does have to be frightening but just take one day at a time and you will make it through.

 

Congrats on your grades!  That's amazing with all that you have on your mind right now.  That shows that you have a determined spirit and you won't let things stop you. 

 

From what I see, you are handling things beautifully.  Once the "shock" of this wears off, you will work around your health problems and still have a good life in spite of it all.  So will your son!  He sounds just like you!  I will definitely keep both of you in my prayers.

 

Sherrine

Posted 1/17/2011 7:00 PM (GMT 0)
Praying and don't worry about tomorrow......Live for today, enjoy life and love your family.......

Take it one day at a time...((hug))
Posted 1/17/2011 10:06 PM (GMT 0)
Thanks so much everyone! All of your kind words are helping me. Dentia, I may ask you a question or two - thanks.

Now it is a matter of keeping my rapport with all of the medical staff. It is difficult dealing with so many personalities, and being in pain, and afraid!

Tomorrow is a blood test, then straight to the cardiologist to rule out dilation of my aorta, then school! Earlier in the morning an ice storm is supposed to hit us just as my son goes to his school. Things certainly are not boring around here.

Wednesday is an MRA and an MRI of the brain. Thursday I get to visit the oncologist with my pictures. My birthday is Friday, I get to turn 41. Yipee tongue

Next week are more tests: two more MRI's and one more heart test.

OK, got that all out, I think. Thanks again everyone!

Free Spirit
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