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Posted 8/10/2008 4:21 AM (GMT 0)
 

Hello everyone, I have been reading over this forum for the past two weeks. I appreciate so much all the wonderful feedback that everyone takes the time to post.

I was recently diagnosed w/ Fibro. I think I have known for a long time but kept telling myself it was all in my head! LOL. I think my symptoms began 10 years ago and I kept doing things to "fix" it. I have had debilitating migraines since I was 13, have had back surgery, knee surgery, removel of a ovary and fallopian tube, panic attacks, anxiety disorder, and numbing depression. One year ago my depression hit an all time low after surgery. My doc changed my anti and also did MRI and CT scans and diagnosed me with osteo arthritis. But in the last six months my pain, that I tell myself to "get over" has increased beyound the "get over" phase. I have been taking Neurontin for 6 months. It seemed to help and then I hit a brick wall. Sat in my docs office crying last week and he said to me "I believe you have Fibromyalgia". He did the pressure point test,( I am numb on the righ side of my back x 1 year) went over my other history, wrote a lab order for bloodwork and upped my Neurontin from 1200mg per day to 1800mg per day.  I go back in 2 weeks. He seems to be very understanding (He is young doc, which I think helps-as they are sometimes up on more things like this as opposed to an older doc-"can't diagnose what you cannot see")

I will be very honest. I felt such relief when I left his office. To know that I have a diagnoses and it isn't all in my head.

My main fear is my family and their reaction to this. My husband is understanding but needs to learn more-"a pill won't just fix it". I always seem to be the one in the family with the weird stuff!! Feeling like I might have to really try hard to explain what I have . Or justify it? I am debating on if I need to make a big deal of this right now. I don't live close to my parents and they don't really know how bad it is or that I am hurting. I hope this makes sense...does anyone else have similiar circumstances?

 

Again, thanks so much for a great forum and for everyone sharing their stories and letting me see into your lives a bit!

 

 

 

 

Posted 8/10/2008 4:57 AM (GMT 0)

Welcome Equine Lover,

  Yes, we do know how you feel, all to well.  We have been there and done that many timewith doctors and family members not understanding some because they are scared and some because they just think you want everything to be about you. (my family).

I is hard to know your self that you have a disease that is not cureable but at the same time it is good to finalle a name on it to.

I have known that i had fibro and CFS, but, just found out about the osteoarthritis and the Psoriasis. I am on so many pills now that i get sick thinking about having to take them. it really helps to read the letters here as you know you are not alone in this, i think what you should do is get some info on fibro and give it to your husband and family to read that way they see it in print and it makes it more real to them.

My husband reads up on everything he can get his hands on when i have a flare or a new disease so that he understands what to expect and how he can help me through it. So feel free to ask what ever and they will be here to help you.

Take care and i hope your day is better Sunday and it is today.

Posted 8/10/2008 5:27 AM (GMT 0)
Hi there,

I don't feel that you have to justify anything to anybody but that is just my 2 cents worth. If they don't believe in fibromyalgia, just tell them your osteo arthritis got worse. But if they want to learn about it, you can print off some information for them off of the net.

I am happy that you have such a kind and understanding doctor. That really helps. I have a good doctor too, I am really comfortable with him.

Oh yes, welcome to the HealingWell fibromyalgia forum. There are a ton of wonderful understanding members here and I am sure that you will get more replies on this thread. Feel free to post anytime.

hugs, Karen
Posted 8/10/2008 8:09 AM (GMT 0)
Hi there, sorry to hear not well,  you know the best way to get people to understand is to go to various postings and take copies to show your loved ones, this adivse was given to me from a lovely member under the posting "guilty about family"  try it I did and it has helped others to understand

Posted 8/10/2008 1:04 PM (GMT 0)
Hi Equine Lover and welcome to our family. Sorry you have fibro but glad you got a dx. There is a lot of info in the second thread on first page, fibro 101.

 

My hubby thought he had to fix me when I got the dx of fibro. It took us both some time to get use to the idea that this can't be fixed only maintained.

 

Mayo Clinic has a rather simple explanation of fibro. But if you really want someone to get what it is like to live in a fibro body have them to read "The Spoon Theory", "Tears for a Day" or "Letter From Fibro". You can always invite someone to read the threads on this forum from all these people that live it everyday.

 

I'm glad you joined you already know how great this forum is.

 

luv and hugs

Marlee

Posted 8/10/2008 2:55 PM (GMT 0)

Welcome!

You will love this forum, I do!  So much good advice and support!

It is wonderful to have the diagnoses.  I had conflicting feelings myself, I didn't want FM but I was happy that someone finally didn't think I was insane. 

I was diagnosed about 2 years ago and my husband is just starting to try and understand what is going on.  He thought I would be fixed by the meds too.  If only that was the way it worked.  My husband and I have a long way to go but I'm hopeful that we can get to better understanding of how this affects me.  One day at a time.

Meggie

Posted 8/10/2008 4:14 PM (GMT 0)
Welcome to our family!

Not much more I can add to this but to say we know where you're coming from. I'm pretty much a newbie, but the support and understanding I've found on this forum is incredible. You will learn a lot just by reading through the posts or in the Fibro 101 thread.

No one in my family really understands this DD (darned disease) either. I've just printed copies of "Letter From Fibro", because I'm at the end of my rope trying to make them realize this isn't just going to go away.
Posted 8/10/2008 4:47 PM (GMT 0)
Hi, Equine, and welcome to the fibromyalgia forum!  I'm sorry to have to meet you this way but we are here to help you. 

 

Most of the time  you cannot get people to understand.  I explained it to my family and then moved on with my life.  They saw me limping, having difficulty getting out of a chair, wincing when doing something painful for me, and now they do understand.  Occasionally I would ask for help but I always try to do it myself first.  It's so important to move and stay active with fibro so that's what I do. 

 

Friends?  It's really hard so I don't even bother trying to explain to them.  If they ask me questions, I'll respond the best that I can.  I'm severely hearing impaired and they can't understand that either, so I just live my life.

 

Be sure to check out the Fibro 101 thread.  It is the second thread at the top of the forum.  There are links in there to some good information about fibromyalgia.  There is a link to fibromyalgia symptoms and also a link to "The Spoon Theory".  You can arm yourself with that.

 

I'm so glad that you joined us and I hope to hear more from you soon!

 

 

Sherrine

Posted 8/11/2008 1:16 AM (GMT 0)
Thank you so much for all the replies! I appreciate it more than you know. I am going to print some info from here so I will have it handy. Now I am off to read more of the things I need to learn about living with fibromyalgia.

Thanks, shelly
Posted 8/11/2008 2:14 AM (GMT 0)
Welcome equine lover. I can relate to some of what you've said. I've always been the one in the family that had weird problems all the time that couldn't always be explained. My family seems really understanding, but I always get paranoid that they are sick of me feeling sick all the time and that I'm a burden to them. I know this probably isn't how they really feel, but it's hard to get past those paranoid feelings.

Anyway just try to take it one day at a time. I know sometimes it's hard to accept that you have this disease. It's kind of funny but I knew I had fibromyalgia for months before I was able to get an official diagnosis. Then after I got the diagnosis, I kind of went into denial slightly and this voice keeps telling me that the pain and fevers and fatigue are all in my head and I should be able to control it, but I can't.

I guess the bottom line for all of us is that we have to come to terms with our medical condition, recognize our limits and not be too hard on ourselves.
Posted 8/11/2008 4:22 AM (GMT 0)

Hi Equine and welcome!

Finally a diagnosis! Those brick walls can be painful. mad

My diagnosis was fast because the fibro and depression hit me so hard. I am going to stay on anti-depressants the rest of my life now that I have this.

Just do whatever is "comfortable" as far as your family is concerned and how much you want to tell them. I'm close to my family so they know everything. My family and I are just stumbling through this together as it is still quite new. Please be gentle on yourself and do not be ashamed! You did not ask for this.

When I would hear about people that had fibro I didn't understand it either. I know Sherrine stated in a past post when some of us were saying how our family/friends, significant others had NO CLUE- she stated to give them "time" and that they will never totally understand it because they don't have this disease. That helped me to put myself in their shoes.

You've come to the right place- they are the best here and they understand exactly what your going through! Nice to meet you! GamJill

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