Newly Diagnosed

Welcome Introductions
1

Hi Everyone,

First of all thank you to those who have already greeted me on my profile. I can't even begin to tell you how great it felt to get those emails of welcome and encouragement on a pretty bad day. At this point I'm really struggling with getting my head around this. For so many years I was told it was all in my head and nothing was wrong with me so I kept going thinking I was just a hypochondriac. But now that I have officially been diagnosed, it's like I can't accept it. I just keep thinking, well maybe they will find something else wrong that can be fixed and this won't be real. Other than the pain I have this terrible dizziness that has effected me to the point that I'm home on short term disability trying to find some answers. I am a very driven and career oriented person and I can't make sense of not being able to work right now. I went back for one week, two weeks ago, and realized I wasn't ready. But I'm really scared of losing my career to this. I'm just not really sure where to go from here. I'm seeing a therapist, psychiatrist, RA, medical doctor, getting prolotherapy injections for the pain in my neck and shoulders, getting a second mri on my brain next week and trying to work in some time on the treadmill once and a while, aso tried an aqua aerobics class. It is very frustrating reading that there is no clear cut answer and what works for one doesn't work for others but can anyone share with me how they got over this point? I'm also really tired of hearing, "Oh, that's what doctors tell you you have when they don't know what's wrong." How can I get this manageable so I can continue to work?

2

Becky NYC:
Welcome to the group! It took me a couple years to come to terms with my diagnosis of Fibromyalgia. It is hard to let the person you used to be go and to accept the new you with this chronic condition. I continue to work full time despite the pain and fatigue. Not sure some days how I do it but I just take it one day at a time. You need to work closely with your medical team to find the right treatment for you and to find what works to make it manageable. I hope you find some reprieve soon.

3

hi NYC. I live in Brooklyn near Brighton Beach. I just have a moment right now but to tell you that many people have different levels of illness and many are able to work and manage. so i send you the best thoughts that you will be able to do the same. love and hugs and talk to you another time . i also go to the chatroom often so hope to also see you there when you have time. xoxoxoxo

suzie

4

Hello!

I would suggest listen to you body, I work full time and drag myself in the morning as I have a full 7 hours of sleep and and wake up as I have slept 3.

Only those that see you deteriorate understand this condition but is very difficult when someone pretends to tell you that this is an emotional condition, your emotions are affected by it.......

Wish you well!

5

(((HUGS))) Welcome!

I'm still in this state so I'm not sure how to find a way thru it. i just get up every morning and do what I can. So far it's working but then again I don't feel like I'm getting anywhere so ? Just hang in there. Take the advice of your doctors that make sense but most of all listen to your body.

Wishing you all the best!

6

Welcome Becky,

I know it's a big change for you in so many ways, to go from being so well to fibromyalgia. We all do. Coming to terms with this is a process, and the best thing about this group is that you don't have to go through it alone.

Thanks for introducing yourself,

SK

7

Thanks to all of you for all your kind words. It's day by day for me right now. Has anyone here tried yoga to treat it? I've heard some people have success and some don't. I've haven't been able to work out for so long and am trying to start a regimine again but yoga has always been tough for me since I really struggle with flexibility. Has anyone had any relief from yoga? I just downloaded this book: http://www.barnesandnoble.com/listing/2688833663463?r=1&cm_mmca2=pla&cm_mmc=GooglePLA-_-Book_5To14-_-Q000000633-_-2688833663463, hoping for some ideas. Thanks again everyone. I can't tell you how nice it is to have found this place where people finally understand what I'm going through.

8

Hi Becky and welcome! I'm sure sorry that you've got fibro. For some reason it seems to love attacking people who are real Type A workaholics. Unfortunately, most workaholics have a hard time wrapping their head around the idea of not being able to control their bodies anymore, nor how much they can work. You'll need to take plenty of time to get used to this new normal for you. It's a gradual process. You have a lot to absorb. It's almost like a part of you dies and you have to go through the stages of grief in order to move on. DENIAL is a huge one. In fact, I wrote a thread called Denial isn't a River in Egypt, where I pored out all of my frustration and disbelief of what was happening. I still go through it because my fibro has progressed and i don't like that very much. ANGER is another thing you'll go through. I went through months of it last fall and winter because I can no longer walk much at all and really need a wheelchair to get around. So yes, ANGER. GRIEF is another stage, where you just mourn the things you've lost. And then, finally, there is ACCEPTANCE. I seem to be a dunce on that stage because I get to it then back right up again, lol.

Did you recently start taking meds for the fibro? Because it's possible that they are causing the dizziness. when I first went on Lyrica, I was dizzy and loopy for several months.

You are a much stronger person than you probably realize right now and you WILL get to the point where you have at least partial or maybe total acceptance of what's going on with you.

My best advice is to ignore the people who claim fibro is a junk diagnosis or anything else that is not helpful. Fibro is best understood by those who suffer it.

Sounds like you have a good team put together for helping you with various angles of your illness. That's very good. You sound like you've been very proactive, which is also good.

I'm not sure how your job situation will turn out. All you can do is take care of yourself now. Pushing even more can make the fibro worse. Work if you can but try not to stress out about it if you can't work full time, for example. I'm sorry to say that there is no "getting this manageable," as fibro has a mind of its own. But if you rest a lot, get proper meds and vitamins that you may need, and be gentle with yourself on your work and work schedule, that will help.

Pacing yourself is key to dealing with fibro. If you go back to work and get exhausted doing a task, take a bit of a break until you've regrouped yourself. In fact, let me include a good article on pacing yourself: http://www.butyoudontlooksick.com/wpress/articles/written-by-christ... You may not understand how this will tie in with you and your life but you will after a while. It's an invaluable article. Pacing yourself is key.

Ok, gonna pace myself and rest for a bit as typing tires me out. My best to you and please keep coming back!

Hugs,

Pet

9

Hello Becky and Welcome.

I am still in the acceptance period myself as I was just diagnosed.Most of us have had the same reaction to the diagnosis."FINALLY...I'm not a hypochondriac!".. followed by..."Great,I have something that nobody understands".It's an emotional roller coaster but the people here are so loving, and if it weren't for them,I would have lost it by now.There seem to be quite a few of us newbees so you're not alone.

You're entitled to every feeling that comes along,good or bad.Anger,sadness, frustration,confusion...whatever it is,my advise...Let them come...feel them, and they will pass.The worst thing you can do is bottle them up.Give yourself whatever time you need and talk to us.

You can ask whatever you want and you'll get answers from the people who live it.All of the weird symptoms that you can't quite put into words and have shoved aside because they seem almost too bizzare to talk about....I can guarantee that the members here will be able to relate and immediatley,you'll feel like you're normal after all.

Be kind to yourself and we will too:-)

10

Hei Becky! Its great to have you with us, if support is what you need your in the right place, if there is anything I can do please ask. I have been here for a year now, and have my fibro diagnosis but manybothers as well. I hope to chat with you gentle hugs jackie

11

Thanks Pet. It's so great to know I'm not alone in this and there are many other amazing people here dealing with the same things. I'm actually not on any of the approved meds for FMS and have been dealing with the dizziness for about 2-3 years now. It's more of a floating sensation and loss of balance. This just aren't right. Been to two neurologists and about to have my second brain mri. I've read that some people experience dizziness with FMS but I'm not sure if it's the same kind or if maybe I'm dealing with something additional. Really hoping to find something soon. Also, I'm in the first week trying the allergy elimination diet to see if there are any foods that could be contributing or making things worse. I'm easing in to working out again, 30 minutes on the treadmill 3 days a week, this is week 2. Not pushing too much and keeping my rest days in between, made the mistake of going two days in a row a few weeks back. Felt like the flu for the next three days.

Thank you for the article, I will definitely check it out.

Have a gentle day!

12

I'm so sorry to hear about your recent diagnosis. Seems like there are a lot of us on here. Anything you have tried so far? I'm taking fibro ease, vitamins and doing prolotherapy injections in my neck. Also trying to get a routine with exercise three days a week for now. I was just recently put on welbutrin for the depression which seems to be helping with my mood and staying positive but it's only week one. I'm also doing an allergy elimination diet to test out if any foods could be making my symptoms worse. Hoping to get in some good yoga stretches too.

13

Thank you Jackie. Appreciate your support and for reaching out. What have you had success with?