Hi everyone. I am new to the site. So here goes…
I was diagnosed with FM in 1996 at age 22. I actually didn’t think much about it as at that time most doctors said it wasn’t a real diagnosis anyways. I was seeing a therapist for depression and every psychologist I had seen throughout the years said all of my symptoms were due to anxiety and depression. I tried many antidepressants and nine of them really helped me. So on I trodded through life. Hoping one day I wouldn’t be depressed and tired and sick all the time. I was constantly missing work and life. I always thought I had a bad immune system and my depression was just really bad. Over the past five years I would revisit my FM diagnosis but wouldn’t really take it seriously. I often wondered why I was so sick. Why I was so tired. Why I couldn’t do the things I wanted to. Why I always had to nap. Why I had no energy. Why I was always in pain. Now I have been researching FM feverishly and see that I have almost every symptom of FM along with every tender point. A bit of a relief now knowing that I can stop trying to find out what is wrong with me. I was put on Gabapentin last fall for pain and it has helped a bit. I still suffering from severe exhaustion and no motivation to so anything. Like go to work. I have a little one at home that my mom can help me with but I am missing out on life. I am missing out on my son’s life. He even said this morning that mommy stays in bed all the time. He is almost three. That crushed me. I don’t want his memories of his childhood being of me sleeping and nothing else. How can I choose to get up and get moving over the pain? How can I get up and go to work when all I want to do is lay in bed? How can I switch my mind into active mode instead of allowing the pain to push me down. Is there anything out there that can help with energy?
Lalabug,
Hi I hope that you are doing okay. I want you to know that I too could not get up and the pain the exhaustion was killing me. My dr first put me on cymbalta and gabapentin then two weeks later took me off gabapentin and started lyrica. I’ve been on lyrica for almost two weeks and the awful feeling and pain has really lessened. From day one I noticed the difference. I’m on 90 mg cymbalta and 50 mg three times a day of lyrica. I feel like I can deal with this pain compared to what it was. I was in a 10 week flare that was slowly making me want to die.
I know what you feel about your son, I too have a son he is four and I seriously have to kick myself in the butt to get up, go to work and then come home and play with him. Somedays I have to nap and he sits next to me and plays iPad or watches tv then I get up and we play video games or watch a movie or play on the bed. I can lay down or relax doing any of these things. It’s still not easy but I know I must do it.
Please see your dr and see if you can start lyrica I really stand behind it. It makes me feel a little dizzy and a little foggy but it gives a boost of energy and the pain goes down. So worth it. Cymbalta helps too. It made my sadness change into I can do this. And helped with the anger I was having.
Hang in there. Don’t give up. Get up and fight. We can do this for our sons. I’m here for you
Your posting made me very sorry for your situation it must be so hard having small children to have to mother when you have fibro, fortunatly I never even considered having a child knowing I had this condition I just knew it would be horrible for the child and I would know I could not give it 100% of me, I know your feelings are supposed to change when you have one, but with this condition I think the pain and exhaustion would win even over the needs of my child when I'm having a bad day I'm really not up for anything I don't think it's selfish it's just that my pain and exhaustion then a migraine on top I struggle to care for myself let alone a helpless little one they need to be loved, and nurtured, and time spent playing games and taking them places participating in their lives it's almost a relief and after reading your post it really hit home that it could have been me writing that post.I really have great admiration for the mothers with fibro I really don't know how they cope with small children they really arre super mums and I just hope those kids grow up one day and apreciate what there mums have gone through just for them to live a happy life you are all very special woman and all deserve a big warm hug
Exercise. It sounds crazy I know, and I didn't buy into it either until recently, but I find that pushing though the pain, exhaustion and depression make them all better. I have a little more energy and walk around with more of a melancholy than a full on depression. Even on the worst days I do something. Yoga, the treadmill whatever... something. I keep a fully outfitted gym bag in my car so that on bad days I don't even come home from work, I go straight to the gym and do something. As time has gone by, it gets easier, (nothing is more motivating than results)
When my kids were little, I gave in more often and I'm sorry that I did. I too missed a lot. They are grown up now, and my daughter has a baby of her own. :) I know I wish I'd been more with it back in the day, but I didn't have a diagnosis back then, I was depressed. I didn't even have energy to eat after I fixed my families food. I wish I had just pushed through...hind sight being what it is, I can't change the past but my beast is not going to define me now. You don't fix it, you cope with it. I'm coping better all the time. (Sun shine helps too)~Dusty
It's really hard to tell you what to do because everyone is different in their levels of chemicals on their bodies, and at different stages on age and the progress of this disease.
Find the time of day you have the most energy, try to get up and do a few things, then sit down, rest awhile, and get up again... I have found a hobby I really enjoy and it gives me something I can do, that isn't too taxing on my energy, but relieves stress. I make jewelry, and have been selling it to my friends, and on eBay, and wearing it myself of course. It gives me a purpose, and makes others happy, and me as well, it is pretty to look at. It could be anything, just sitting up and reading a book, or scrapbooking, painting... but it helps.
I was the same as you my whole life always felt bad, hurt all the time, and my anxiety was awful. Went to doctor after doctor... some told me to exercise and loose weight,(which I wasn't that overweight) others told me I might need counseling, others took tests and we could never find anything wrong. Then when we finally figured it out, I was relieved. Then I started doing research on Fibromyalgia, I was frustrated again, knowing there was no cure, no one knew much about it, and others mocked it.
It is just part of our lives, we live with it every day. I am a Christian, and my Faith helps me, and the support of my family, friends and church. Facebook is great too, have connected with several cousins haven't been in contact with on years. I found out many of them were going through the same thing as me. Finding out this thing runs on my family, big time!
Anyway, getting back to the basics, it's called survival mode. Until there is more found out about this disease we are just what we are. We have to accept it, and try to find something to do to survive that makes us happy.
You are in my thoughts and prayers Lalabug,
Hugs
Melody
I would just like to reply to your posting. Hopefully not to be defensive. I want people to know that it was not until this past few months that I had symptoms of FM. My choice to have a child was not with the thought of “well I have FM and I will just muddle through because I want a child and I am sure that it will be ok.” I was diagnosed with FM many years ago and many doctors told me it was a fake disease so I never even considered that I truly had it until actually one month ago when my symptoms flared and I did research. Trust me the guilt I have not being able to do everything I would like with my son is enough to do me in. I have a supportive husband and mother and friends who help me provide a very good life for our little boy. I guess what I am trying to say is that I was not in a position where my want for a child trumped my ability to provide for my child no matter what the consequences were to my boy. I am sorry if I am being defensive regarding your initial comments. They just hit a nerve. My family is my main priority and getting to a point where I can cope is a very important goal. This past month has been difficult so I am doing my best.
Exercise and fresh air! Walking outside with my son seems to be helping. Thanks for the tip! Pushing through is going to be my mantra starting tomorrow. Can’t stay in bed and pray that my symptoms will lessen.
Get up and fight for our sons!!! Love that!
Melody,
Faith is a cornerstone of my life too. Thank you for your prayers. As for hobbies I have many. I take on too many. Lol. Thank you for being my Fibro Friend! God Bleas you too.
God Bless is what it should have said!!!
Hi Lalabug
Hope today has been a better one for you. Today is a ugh day. After work I managed to shower and now again I’m on the recliner with my son. But we are having fun and that is all that matters. I just wanted to check in and see how you’re doing. Did you see the 40 things we can do withy our kids while lying down post. I really like that!!
joy