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Unread 12-18-2012, 03:18 PM   #1
ozzysun
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in 2006 I started getting pelvic pain so bad that I ended up in the hospital over 4 times within a four year period and in bed for many days (very random). After hundreds of tests they never found anything wrong with me.( at the hospital or with any follow ups with my family doctor). Sometime at the beginning of 2008 I started to shake one day, I looked like I had parkinsons. This lasted for about 3 days, the doctors found nothing wrong.

The end of 2010 I woke up one day and felt like I got hit by a train. Every bit of my body hurt (even parts I did not know existed) I felt SO tired all of the time, so weak I could not hardly move. It got to the point I was missing work 1-3 times per week, I had to cut my hours to 4 hours a day 3-4 days a week because that’s all I could handle. Many days everything hurt but almost all days it was my wrists, neck, legs and hips. I was very un-cordanated and had a hard time knowing how hard I was holding on to objects (I often dropped things)

I got pregnant in April 2011 and my symptoms all went away. I did not feel any of my symptoms until my daughter was 4 months old, at this time my wrists started to hurt most of the time, it feels like someone is sticking knitting needles in my wrists and to my hands/fingers. Some days my wrists felt great, but most days its all pain and weakness. From this time until now (over the last 7 months) I slowly started to feel more and more symptoms but most (other then my wrist pain) was bearable.

Last week, I woke up and again felt like I was hit by a truck. Every part of my body screaming at me. Trying to live life became SO hard. Two days ago I started to shake again, this time it only lasted 5 or 6 hours, and now I have been getting random neck twitches. Just some random stuff I am not sure if they could be connected or not.

Also over the last few years I have started saying words backwards, getting stuck on words, having a hard time saying the word (or thinking of the word) I want to say and stuttering a little bit at times. This has become normal for me now.
Small parts of my body going numb (like part of my face or a little “square” on part of my leg, not a whole body part) I was having stabbing head pain and face numbness and was diagnosed with having migranes, although I don’t often get migranes anymore I still get numb spots.

They have not found ANYTHING wrong with me, and I can not connect it with any triggers.
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Unread 12-20-2012, 02:02 AM   #2
Rrae
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Welcome to NT!

I'm so sorry you are dealing with all of these symptoms and not getting any answers. I know how frustrating this can be.
At first in reading your post, I wondered if anyone had mentioned 'Fibromyalgia' to you. Unexplained pain can lead to many trails of searching for answers. I made the mistake of trying to find answers via the internet and ended up convinced I had 40 terminal diseases!!

There are many forums here that I'm sure you'll find helpful. Answers might not come right away, but as you gain support from others, you'll see that you are not alone in your struggles. People here are friendly and caring. It's a very down-to-earth atmosphere, so make yourself at home.

Friends are on the way!

Caring,
Rae
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Unread 12-20-2012, 05:13 AM   #3
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For what it's worth, I was dx'd with Fibro in '76 and symptomatic going back years before that. Surprisingly, I was symptom free durring both of my successful pregnancies and the problems did not resume until I weaned the babies. After enjoying the relief I experienced with the first child, I swore I wasn't going to wean #2 until she got married. Good thing I changed my mind as she didn't marry until she was 30.
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Unread 12-20-2012, 12:52 PM   #4
ozzysun
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Thank you guys! I am still waiting to see a rheumatologist (I have been waiting 2 years already!) My new doctor did the trigger points test and said he thinks I have "slight fibromyalgia" When I cant get of the couch to feed my baby because of the pain I dont feel it is very "slight".

I feel I am not being taken seriously by the doctors I have seen about this. I dont know how else to tell them how bad this gets! I am glad there is a place like this I can feel some love
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Unread 12-20-2012, 04:52 PM   #5
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Quote:
Originally Posted by ozzysun View Post
Thank you guys! I am still waiting to see a rheumatologist (I have been waiting 2 years already!) My new doctor did the trigger points test and said he thinks I have "slight fibromyalgia" When I cant get of the couch to feed my baby because of the pain I dont feel it is very "slight".

I feel I am not being taken seriously by the doctors I have seen about this. I dont know how else to tell them how bad this gets! I am glad there is a place like this I can feel some love
I found the most effective way to get their attention and co-operation was to concentrate on how the pain effected my level of function and lifestyle, not on the pain level itself. The way it effects you says a lot about the pain to them. Before your next appointment, sit down and make a list of the things it hinders or prevents you from doing. Make it detailed. Talk about your need for restored function and concern about the direction you feel like you are going. Best wishes.
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Unread 12-22-2012, 03:46 PM   #6
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That's great advice Spiney.

I hope that you are able to ge some answers from the rheumatologist, Ozzy.
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Unread 12-23-2012, 01:41 AM   #7
anonxyz
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Default Have you seen a neurologist who specializes in headaches and fibromyalgia?

Your symptoms are so numerous that it sounds like you have to take one at a time. Why so long to see a rheumatologist? Hope 2013 is better for you. drcandy


Quote:
Originally Posted by ozzysun View Post
in 2006 I started getting pelvic pain so bad that I ended up in the hospital over 4 times within a four year period and in bed for many days (very random). After hundreds of tests they never found anything wrong with me.( at the hospital or with any follow ups with my family doctor). Sometime at the beginning of 2008 I started to shake one day, I looked like I had parkinsons. This lasted for about 3 days, the doctors found nothing wrong.

The end of 2010 I woke up one day and felt like I got hit by a train. Every bit of my body hurt (even parts I did not know existed) I felt SO tired all of the time, so weak I could not hardly move. It got to the point I was missing work 1-3 times per week, I had to cut my hours to 4 hours a day 3-4 days a week because that’s all I could handle. Many days everything hurt but almost all days it was my wrists, neck, legs and hips. I was very un-cordanated and had a hard time knowing how hard I was holding on to objects (I often dropped things)

I got pregnant in April 2011 and my symptoms all went away. I did not feel any of my symptoms until my daughter was 4 months old, at this time my wrists started to hurt most of the time, it feels like someone is sticking knitting needles in my wrists and to my hands/fingers. Some days my wrists felt great, but most days its all pain and weakness. From this time until now (over the last 7 months) I slowly started to feel more and more symptoms but most (other then my wrist pain) was bearable.

Last week, I woke up and again felt like I was hit by a truck. Every part of my body screaming at me. Trying to live life became SO hard. Two days ago I started to shake again, this time it only lasted 5 or 6 hours, and now I have been getting random neck twitches. Just some random stuff I am not sure if they could be connected or not.

Also over the last few years I have started saying words backwards, getting stuck on words, having a hard time saying the word (or thinking of the word) I want to say and stuttering a little bit at times. This has become normal for me now.
Small parts of my body going numb (like part of my face or a little “square” on part of my leg, not a whole body part) I was having stabbing head pain and face numbness and was diagnosed with having migranes, although I don’t often get migranes anymore I still get numb spots.

They have not found ANYTHING wrong with me, and I can not connect it with any triggers.
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Unread 12-26-2012, 01:57 PM   #8
Rrae
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Quote:
Originally Posted by ozzysun View Post
I feel I am not being taken seriously by the doctors I have seen about this. I dont know how else to tell them how bad this gets! I am glad there is a place like this I can feel some love
Oh how I know what you are feeling! It's almost MORE frustrating than the pain itself! Finding this place has really helped things come together for me. Just knowing that I'm not alone brings comfort. We're all in this together. I went thru all the different specialists also....most were like hitting a brick wall!
Eventually you WILL find a Dr who will listen.

Rae
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Unread 12-26-2012, 04:32 PM   #9
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the fact that the sx waned while you were pregnant, SCREAMS, autoimmune.
A rheumy is whom you need to see, good luck.
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Unread 12-29-2012, 11:34 PM   #10
ozzysun
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Thank you for all of your replies!

I dont know why I have been waiting to see the Rheumatologist, I just got a new family doctor he is going to help me move forward with everything (including getting me in faster!!)
Little parts of my body get tiny muscle spasms now, at first I thought it was numbness but its my muscles twitching ever so lightly... It feels like new things are popping up all the time :S
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