I'm a new member - my story

Hi everyone. First of all I’d like to say I’m so thankful to have found this spot. I look forward to sharing and learning a lot about this condition. I’m 34, married 8 years and have a 2 year old daughter. I was diagnosed a few months ago in Dec 2012 after years of pain and going dr to dr. I became pregnant July 2010 and prior to pregnancy I already didn’t “feel right” but I couldn’t put my finger on what was wrong. I had lots of tests and labs done and everything was fine. On paper I am the epitome of a perfectly healthy 30-something. How I actually FEEL is a completely different story. My pain started in earnest during my 7th month of pregnancy. The drs said all the aches and pains should dissipate after birth but they didn’t. It just got progressively worse. I returned to work 8 months after my daughter was born and I still felt unwell. My job is super stressful and about 10 months after returning I had to go out on short term disability as I couldn’t even tolerate sitting at my desk anymore and the fatigue was overwhelming. I’d already been missing work at least one day a week because I literally couldn’t get out of bed. That’s when I began my mission to figure out what was wrong. I thought it might be my thyroid but that came back fine (although they did find a small nodule on my thyroid dr said it’s tiny and not worth treating yet so it was left as watch and wait). My primary dr then referred me to a rheumatologist. I got lots of labs done and she discovered I had severe vitamin D deficiency. Eventually she diagnosed me w fibro. But my vitamin D is still not even close to normal and I’m also deficient in phosphorus. I’m taking supplements for both. I wonder if maybe I don’t have fibro and my problems stem from these deficiencies but dr said fibro patients often have low vitamin D and struggle to get levels to normal. That seems to be my case. I’m taking these crazy high supplements and the levels don’t budge. I also am about to stary Cymbalta and take percocet for temporary relief when the pain is unbearable.I never imagined that I’d feel this way in my early 30’s. I think the thing that bothers me most is the incredible guilt I feel when I can’t interact with my toddler the way I’d hoped and the way she deserves. I try to be the best mom I can but I feel terrible when she’s begging me to come on the floor to play w her and I can barely move from the sofa due to pain and fatigue. Every night I go to sleep hoping tomorrow it’ll all magically disappear but every morning the pain and stiffness reminds me that apparently this isn’t going anywhere. I think I’m still trying to accept the diagnosis. I know I just need to accept it and move on so I can be more proactive in taking control of my life. If these are the cards I’ve been dealt so be it.

Accepting my pain in my diagnosis is the best thing I’ve ever done for myself.
I got some other diagnosis is well, but I’m also 34 years old.
I have an 11 year old daughter, basically have to do a good majority of the house work.
She is 1 that likes to be tickled and wrestled and play around physically but that’s something I can only do with her maybe once every 3 months for about 3 minutes.
The good thing that you have is a young child who understands and will be used to your limitations as she grows up.
She won’t love you any less, but in Your limitations in needs, you will teacher to be a wonderful caregiver as she grows. The help that she will be able to give to others is just incredible if you think about it.
And accepting my pain, it doesn’t mean that I like fibro in the smallest bit.
take today for example, I’ve had planned to take my mom to the doctor and get some other things done. My daughter is on spring break, and here I sit on my couch barely able to move at all.
After a double dose of my pain meds, my entire body feels like a lead weight waand still a ton of pain. I’ve gotten past my frustrations of not being able to function today and just be grateful that I can and have the option to sit on my couch today. I am so glad that you found us! This is such a great place to get advice give advice and just vent.
In my experience, the most frustrating thing about my illness, is the doctors.
I wish you luck and I hope I can be here for you to give you some advice if you have any questions.
I’m also a great listener as well.
I send you a great big giant gentle hug!

Hi Elisse,

I am new to this support group, and also very thankful I found it. Prayers - gentle hugs.

Jackie

Its hard not feel bitter when you can't enjoy your children. I have 2 daughters ages 6 and 3. My aches started with my first pregnancy but with my second one...it was horrible. Today my eldest asked me why her mom couldn't be like normal moms. Broke my heart but its the way life is. I hope when they are older they will understand.

Hi Elisse! Welcome! I’m glad you found us. You will find an abundance of love, compassion and understanding on here. I have been so greatful. There is nothing to big or to small to post on here that someone wont be able to support you with.

I’m sorry your feeling so much guilt about your daughter. : ( it is hard and it isn’t fair. I have two children and my youngest who is 19 has a hard time understanding and accepting this thing called fibromyalgia. She is mad that I am not like other moms. And has told me, I just want my mom back. Althought my life as I knew it was stolen from me, it was also stolen from everyone I love.

I try real hard to be greatful for life as it is and make the best of what I can. Some days are harder than others.

I’ll put in a friend request to you and any time you want to talk let me know. : )
God bless you, fibroerr ( Lisa )

Welcome to the group Elisse. From what I have read, this seems to be an amazing group of people. I hope we can all help each other through this illness.

Patricia ~ I am going to look into all of this. Thank you for sharing. I love hearing that someone is pain free and off medications. I look forward to doing the same.

Hi Elisee,

It is tough to hear that anyone has to suffer this, but it is heartbreaking to continuously hear of so very many young being struck down with this.

Our site is a great place for information. Click on 'discussion' at the top of the page and use the search engine to research every subject related to fibromyalgia, including the many definitions that have been posted. Here are the posts on Vitamin D.

http://www.livingwithfibro.org/forum/topic/search?q=vitamin+D+

Here is some info on D3 that you may not be familiar with.

http://www.picrx.com/forgottenhormone.htm

We are pleased to welcome you, and glad that you are here with us!

Wising you well,

SK

Good morning! Welcome! I am a 36 year old wife and mother. Married 10 years, and Mom to two very active boys 18 and 9 years old. I believe in hind site that I've had the Fibro since I was about 16 years old. I think back to extreme fatigue to the point of sheer exhaustion while attending classes in school and not feeling rested when waking up. I was in two car accidents in 1993 where I had bad whiplash from both accidents. I've had back and neck problems ever since but always chalked it up to those accidents. Finally in January 2010 I was in another accident where a lady was speeding through a gas station parking lot and hit my car. It did damage to the car but was not a "bad" accident. However I missed 3 weeks of work due to what seemed like some kind of nerve damage in my lower back, I couldn't sit or stand or walk for long at all. I did therapy and it eventually seemed like it got a little better. However it still hurts to this day. After being diagnosed in the fall of 2010 I came to realize that "spot" in my back is a trigger point. My doctor seems to think I had the Fibro since I was a teen at least and that accident in 2010 just set me over the edge and into full blown Fibro. I have 16 of the 18 trigger points and suffer from Migraines, Irritable Bowel Syndrome and Anxiety issues. I have tried Cymbalta, and Savella and cannot take either due to extreme side effects. I have had IV Lidocaine injections, Trigger Point Injections, etc., and for whatever reason my body will not respond to any of those treatments in a positive way. So like you the frustration continues. I was somehow managing to work up until June of 2012 and had to quit working because the pain, fatigue and fibro fog were so bad there was no way I could get through another day at work. So I am currently fighting for disability with the state of Ohio and was already denied once. I had to realize I can't go back to work and it is what it is this hand that I've been dealt. I have gained quite a bit of weight in the past 2 years and I'm currently struggling with that, it's really stressing me out! I decided even though it's very painful I have to bring exercise back into my life. So yesterday I started by going for a walk. I didn't make it real far, but I did it. So today I plan to walk again. I want to try to do it every day now that the weather is getting nice again. I am also trying to eat more fruits and vegetables and started taking a probiotic in hopes that maybe I can start to heal my body a little from the inside out the natural way since nothing has worked that I have tried medically. I did recently get a Tens Unit and that does help with my back pain and trigger points there. The best part is I can wear it out so if we have a long car ride somewhere i can wear it and not be in so much pain. I really hope you embrace what you've been dealt and find some things to help you. It's honestly hit or miss, you just keep trying until you find something. If you ever have any questions feel free to send me a message.