Hello. I am new here. Just want to share...

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Regular Member

Date Joined Jan 2009
Total Posts : 55
   Posted 1/15/2009 12:19 PM (GMT -6)   
Hello everyone! I just want to say how much I have enjoyed reading everyone's stories, opinions, thoughts, etc these past few days. I really feel like it is going to help me get through this rough patch. I recently came to terms with the fact that I was in denial about my condition. Yes, I was diagnosed in August (one month before my wedding) and I thought it was a blessing. IT finally had a name. However, what I didnt think would happen, did. I started ignoring all of the pain and tiredness so that I could "be normal." It wasn't until Christmas when I was able to sit down with my aunt (who also has fibro) and we could really talk and be honest and I confessed to her that I was in denial. I wanted to be normal. Afterall, I am only 24 and have only been married a few months. This is not what I had imagined my life to be. With that said, I have an AMAZING and SUPPORTIVE husband. God has truly blessed me with a wonderful man. However, there have been many nights where I cry because I feel like I am taking his life away too. He is only 26. Has anyone else ever felt this way?
I guess the good news is, I am getting through it. I am learning that I won't be able to work out at the gym for 2 hours everyday like I used to, and now that I found out I am gluten sensitive, I really have to watch what I eat and what ingredients I use. OH, yesterday I found the Spoons theory and immediately sent it to my mom and my husband. I finally feel like I might have a way of relating to people how I feel. I have had an overwhelming support from my family in regards to the Gluten free diet, but I don't think any of them (other than my mom and husband) really understand the fibro part. How have you all expressed this to the rest of your family? I hate when people treat me different or when we have to go out of our way for me. Has any one else struggled with their own strong will? When I tell people how I feel, I get the "oh, yea, I have that" response. They don't fully understand the breadth of pain or the depth of the fog we are in. And honestly, I hardly have the energy to explain.
Ok, so some more info...I pretty much feel like I've had fibro my whole life. At 12, I was diagnosed boarder line lupus. The doc didn't want to give me a full diagnosis in case I really didn't have it, but wanted me to take all the procautions of having it. That same summer we got an outdoor pool. I didnt swim during the day with the other kids because of the sun, but I did get to swim at night. I had a kidney doctor for many years after failing one of my jr high school physicals. I also saw a pediatric rheumy during this time. And Oh, not to mention that during this time we had to switch family drs and I ended up with a...not so good one. He pretty much said I was "too young" for all of the pain I was in and let it go. Turns out, at 20 I had surgery on both of my legs (medial tibial stress syndrome and compartment syndrome), at 22 I had a Lap-Nissen Fundoplacation done on my stomach for Acid Reflux Disease and at 23 I had exploratory surgery for endometriosis and cysts around my female parts. This past year has been a crazy roller coaster for me. I started it in the emergency room, had EVERY GI test imaginable before my gastro doc (who did a phenominal job with me before) referred me to a rheumy to get tested for other conditions. I made sure to send ALL of my records to the rheumy and have a journal of my symptoms from the moment I knew I would be seeing him. SO, on day 1, he spent 2 hours with me and gave me a positive diagnosis of fibromyalgia. He did blood testing to rule out other stuff...and it did...but now, I am learning a whole new life. I have never had to limit myself before. Or maybe I did, but now I limit more. It finally explains why I had all three surgeries...It explains the many months long stomach aches I would have as a kid...It explains why I have been on birth control since I was 16...it explains why I was on an anti depressant for SLEEP when i was a teenager...it explains the awkward diets i have had to be on...it explains the IBS out of no where...it explains why I get as sick as I do and how I have so many symptoms of other "diseases or syndromes."
How can I be in denial of something that explains SO much?
So anyway, I guess I was in the mood to write and share. I look forward to blogging with you all in the future. You guys really have helped me realize that it isnt JUST ME and I am not alone. :-D
I would really love to keep the positive attitude I have, but get down on it sometimes. How do you remain positive?
Thanks so much for listening.
Aimee smilewinkgrin
24. Diagnosed with Fibro in Aug. 08 and Seasonal Affectiveness Disorder in December 08. Gluten free since Nov. 08. Played college soccer. Going back to school to be a Registered Dietitian.
"I control the disease, it does not control me."

Veteran Member

Date Joined Nov 2008
Total Posts : 1097
   Posted 1/15/2009 12:37 PM (GMT -6)   
hi aimee and welcome!!

i am so glad you've found us! this is a wonderful place to come to for support and encouragement and "oh yea, i get that" reassurance. you ask how others remain positive? well, coming here has really been my lifeline there. i had been going through a real rough patch of denial myself when i found this place. i've been posting here for a couple of months and everyone has been so kind and helpful and it is so nice to know i am not alone here. i don't think i could express my thanks enough to other members of this board for just being here. everyone here is so awesome! (thank you, all!) i hope you find coming here to be as helpful and positive as i do:-)

anyway, you said a couple of things that really stood out to me. first of all-i started having bad fibro symptoms right after i met my husband. i fell madly in love with this guy, and then started having these terrible symptoms. i didn't know what to do. to make matters worse, hubby and i got pregnant VERY early on (i am a sperm magnet, i think. lol) and so i really didn't know how to talk to him about how i was feeling. here we were brand new together and having a baby. i didn't know how to say-um, by the way? i feel really horrible a lot of the time and i don't know why. so i didn't say anything at all for awhile. it wasn't until our son was just over a year that i finally went to the dr. i had a gazillion tests-they thought i had m.s. for awhile and my hubby was sooo scared, poor guy. shortly after that, i got pregnant with our second son and all during that pregnancy i felt great! just really energetic and pain free. but then after he was born, i crashed so bad. i felt 100x worse than i did before the pregnancy. after a lot of tests and not knowing, i was finally diganosed with fibro in 2005. it has been really hard for me with regards to my hubby. he is super supportive and understanding, but sometimes i really feel like i've cheated him out of something, you know? like in being married to me he's missing out on having a full, adventurous life. i know part of the problem is that he is younger than i am so i know that bothers me. (he swears it doesn't bother him, though). i don't know..i feel like he got the short end of the stick, especially since i am a different person than i was when we first met. i don't have any answers on how to deal with this struggle..i just take one day at a time and trust that God knows what He is doing! but i did want you to know-i completely understand!

also-i haven't really talked about my fibro with anyone other than the great people here, my hubby, and my sister. my mom knows i have it, but she has her own very serious health issues and so i don't bring it up with her much. my father totally dismisses me and says my whole problem is that i don't get enough aerobic exercise. i don't talk to my extended family much, except for the ocassional emails, and my in laws ignore my issues alltogether, my mother in law especially. she has chronic pain issues, too, and absolutely refuses to acknowledge that i have pain. everything is all about her and she gets real uppity and hostile if i mention my pain around her. so..yeah. this place is my lifeline! lol.

i also hate being treated "differently" by people when they find out. (my former boss got all worried about me when he found out, and i had to say-no, i'm fine! lol) then again, i hate it when people act like it's all in my head and what the heck is wrong with me? that doesn't make sense, does it? but, that's how it is with me. i guess what i want more than anything is not for people to treat me "special" and tiptoe around me or something, but i do want people to acknowlege that i have this dd and take it into consideration. when i say no to something, or seem quiet and tired, i am not trying to offend, i am just really feeling my fibro and need to go a little slower..

sorry for rambling a bit there lol. but you are definitely NOT alone!!!

welcome to the family:-)

love and hugs

this being human is a guest house.
every morning a new arrival-a joy, a depression, a meanness,
some momentary awarenewss comes as an unexpected visitor.
welcome and entertain them all!
even if they're a crowd of sorrows, who violently sweep your house empty of its furniture,still, treat each guest honorably
he may be clearing you out for some new delight.

Veteran Member

Date Joined Mar 2008
Total Posts : 519
   Posted 1/15/2009 12:41 PM (GMT -6)   


Wow, you've been thru alot! Sounds like you have some good support with dh, mom, & aunt. That is good and now you have us! It is really hard to explain Fibro to the others who just don't understand and so I stopped trying.

The 2nd thread from top "Fibro 101" is a good thread to read. Many good things in there including some great stretching exercises. Now that you are no longer in denial and know what is going on, you can move forward and start learning about all the great ways to live with Fibro.

I'm sure more of our veteran members will be with you shortly and have some great advice. They always word everything much better and think of things I don't. Guess that is why they are the veteran's!

It is very nice to meet you and hope to talk more.

Hugs!!!  Margie

Never regret something that made you smile!

Fibromyalgia*Osteoarthritis Of Spine*Sleep Apnea*RLS * Depression*Chronic Fatigue*Allergy/Sinus*Menopause

Forum Moderator

Date Joined Apr 2005
Total Posts : 17060
   Posted 1/15/2009 1:33 PM (GMT -6)   
Hi, Aimee, and welcome!  I see that Margie has directed you to the Fibro 101 thread.  There are links to good info about fibromyalgia there.  You can learn a lot.
It's wonderful that you have such a supportive husband and your Mom and aunt sound great, too.  That will help make your life easier.
You have come to a good place.  We have great people that have good ideas to help you live a full and enjoyable life with fibro.  The bonus is that we really do care about one another.  So I'm so happy that you found us and joined in.  I hope to hear more from you soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 40405
   Posted 1/15/2009 2:33 PM (GMT -6)   
Hi Aimee,

I just wanted to also welcome you to the forum. You are so fortunate to have a husband that understands. I do too and am so lucky. He thought of CFS before I ever got diagnosed with fibromyalgia. When I got diagnosed, I had never even heard of the disorder. So I did a lot of research. I feel so lucky to have found this site, it helps me to not feel so alone with this.

So keep reading, the fibro101 thread has a wealth of information on it, you will want to check that out.

Best wishes for a wonderful painfree and energetic day.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Regular Member

Date Joined Jan 2009
Total Posts : 120
   Posted 1/15/2009 2:34 PM (GMT -6)   
Hi and welcome,

I think we are all in denial at times. I know even now I try to pretend I don't have bladder issues, eat what I want and suffer later. I hope you get the help you need here. this is a very friendly site!!!!
Fibro, interstitial cystitis, migraines, rotated femur, bunion on rt ft, hiatal hernia, for just a few.

reglan, prilosec otc, nadol, citrilipram, flexeril, and peroxicam, and Tylenol.

Veteran Member

Date Joined Jan 2007
Total Posts : 1042
   Posted 1/15/2009 2:37 PM (GMT -6)   

Hello Aimee and welcome to the forum!!  Also would like to give my best wishes to your recent wedding. I cant really add anything except my welcome.  The fibro 101 post will help you so much.




Fibromyagia, R/A, Diabetes, Atrial Fib, depression

folic acid, metformin, diamicron, bisoprolol, fenofibrate, pantoloc, wellbutrin, propafenone, ibprofen, warfarin, methotrexate

Some people dream of angels, I held one in my arms

Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 1/15/2009 2:49 PM (GMT -6)   
Welcome Aimee and congats on your new marriage!!
Sometimes we all get a little down, that's normal, whether your a fibromite or not.
We're here for you when you need us. Glad you found us.
Sounds like everyone has given you some great advice. I just wanted to pop my head in to say hi!!
Be well ,
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel. 
Meds = Elavil, Tramadol, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown

it's not BC!
New Member

Date Joined Jan 2009
Total Posts : 12
   Posted 1/15/2009 3:20 PM (GMT -6)   
Welcome Aimee I am new here as well and know that you will find support within this site. Congrats on the new marriage with a great guy. Hang in there, scream and holler when you have to and cry if you need to...we are here for you.

Regular Member

Date Joined Dec 2008
Total Posts : 176
   Posted 1/15/2009 5:25 PM (GMT -6)   
Hi Aimee! (LOVE your name - especially the spelling on it!) I am in the same boat as you with a lot of things!: I was recently diagnosed with Fibro, am very young too (only 21!), and was also RECENTLY MARRIED!! :-)
Congrats to you and your husband!
Everyone here is wonderful and we will also help you to get through this and stay positive! I understand this is something soo hard to deal with at such a young age... feels like a burden, huh?! But you are NOT alone!
21 years old
Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Regular Member

Date Joined Jan 2009
Total Posts : 55
   Posted 1/16/2009 9:10 AM (GMT -6)   
Thanks everyone who responded!! :-D It is so wonderful to SEE that I am not alone and not the only young one trying to make it. I look forward to many chats with you all!!

Happy Friday!!!

24. Diagnosed with Fibro in Aug. 08 and Seasonal Affectiveness Disorder in December 08. Gluten free since Nov. 08.
Surgeries: Compartment Syndrome/Medial Tibial Stress Syndrome Dec. 05; Lap Nissen Fundoplacation Aug 06; Exploratory Lap Feb. 08.
Played college soccer. Going back to school to be a Registered Dietitian.
"I control the disease, it does not control me."

Regular Member

Date Joined Jan 2009
Total Posts : 41
   Posted 1/16/2009 12:43 PM (GMT -6)   
Hi Aimee,
I am so glad to hear that your DH is supportive. It is important that we have some support. Many do not find it at home, that is why these forums exist.
My DH who is uber healthy and had been all his life said to me the other day " I just want to know how I can help you". I told him by being kind and caring and know that when I am feeling bad, is when I disappear into my room. I just do not want to have anyone see me suffer.

It made me feel 100 times better knowing that he just wanted to take my pain away. Sometimes, that is all we need. Knowing that they care.

Best of Luck,

Fibromyalgia,bi-polar,DDD and osteoarthritis.

Regular Member

Date Joined Jan 2009
Total Posts : 376
   Posted 1/16/2009 5:40 PM (GMT -6)   
Hi there!  Some of us are over on the Denial Aisle if you'd care to join us.  There's plenty of room.
We've suffered a loss, right?  We've lost part of our health and also our expectations of what life would be like and maybe our plans for the future.  There is a grief process that we all have to do through to deal with these things.  I mean .... how can a person understand such drastic changes all at once?  Well, we can't.  There's no way. 
So people have to go through the "grief cycle" to deal with this stuff.  Shock, disbelief, anger, bargaining, and then several stages of acceptance. 
lol ... I know where I am right now.  I'm no stranger to the Loss Department, and it helps to understand the grief process ... but I don't think it speeds up the adjustment.  Time has to work its magic. 
Have you talked to a therapist?  They are so understanding and have so much insight.  My wife and I spent an hour yesterday with my psych ARNP and it helped SO much.
Wed. we talked to my Lyme doc (she's fantastic) and I think I'm getting it.  The 6 months of oral ABX are just to set up the IV ones.  I discussed the brain fog with her, explained my coping skills for working around those bad days at my job, and then asked, "Am I really "fit for duty" for this work (engineer)?"  She was very soft about it, but basically said, "That's inappropriate for the kind of work you've been doing.  If you go back to work it'll be in a different capacity." 
So that's a lot all at once.  We're probably headed for the IV treatments, I have several Herx cycles to go through, I'm likely not going back to work, and, if I do, it'll be something different than what I've done for the last 35 yrs.  Think I can deal with all that at once?  I don't think so.
I do know that I have a great health care team and loving wife to help me with all of this.  I have faith in them.  I also know that I'm not even healthy enough to worry about some of it right now.
Marriage is an ebb and flow.  It's a team.  There will be times when you will "be there" for you husband and help him in the unique way that only you can do.  It all works out.  It's OK that it doesn't seem "fair" every day.
I'm wondering if it's worth the energy to even worry about those who don't understand your condition.  I have a very limited energy budget, and I'm thinking fibromites also have a very limited pain budget.  My wife understands.  When we're out with other family members who don't see us much, I just tell them I'm out of energy, call a time out, and go sit down for a while.  After a rest, I can join in again for some more (or not).  It's something I have to do whether they understand it or not.  I don't need their approval to take the rest I know I need.
I think this forum is great.  The people here are so helpful.  And it really helps to talk about some of this with people who understand.
Lyme, anxitey, depression, chronic C. Pnuemoniae
"... expect the unexpected ..."  (O. Wilde)
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)

Veteran Member

Date Joined Jun 2008
Total Posts : 1279
   Posted 1/17/2009 9:59 AM (GMT -6)   

Hi Aimee and Welcome-

Congratulations on your marriage, your husband sounds like a gem. Oh so young, I just got fibro late last winter and I am 52. We have many young ones here (sad, but true) that you will be able to relate to. 

Having a support group helps me daily- and they are the best here. I try too to have a positive attitude everyday, but sometimes it just wears on you and I think that is just being human. Be gentle on yourself- you did not ask for this, and your just doing the best you can.

It was nice to meet you!


Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
Zoloft, Tylenol 4000 mg., Darvocet  

Regular Member

Date Joined Oct 2008
Total Posts : 257
   Posted 1/17/2009 10:27 AM (GMT -6)   
Hi Aimee: congrats on your new marraige. Your husband does indeed sound wonderful. One thing I think I learned later in life: you can't depend upon your husband to meet all your needs. And, with fibro, there will be times when he just can't be there for you.

I think that's where these forums come in: you have a chance to share (or dump when you need to!) with others who understand your plight.

I'm glad I found this website, and I'm sure you will be too.
Still learning how to manage my Fibromylagia, and all the lovely gifts it brings.   
I had severe spinal stenosis, had fusion done on C5-7, and my life has changed. 

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