Hello to everyone! Just want to say I am so thankful for finding this group! Everything I have read here has been such an encouragement…I have enjoyed seeing how so many of you have formed these special bonds and are such a source of support for each other! This is a hard path to walk alone…it’s not something that I have ever openly discussed with my family / friends…in fact I flat out hide it (with the exception of my husband)…lol…and I’ve come to the realization that “hiding” it is ALOT of work…and honestly, quite exhausting :). So that brings me here :). Trying to let my guard down, to look for support / encouragement, and to also be that for others! I am excited to get to know you!
I do that too! It is very isolating! ( had fibromyalgia since my last baby 3 yrs) I hide a lot and the only one I seem to talk to is my husband. My dear friend that I had for years stopped talking to me when my fibromyalgia started getting more constant, daily, worse and I now am on medication and it’s still not helping and I still am in pain. It’s like I feel something must be wrong with me, my best friend thinks I’m trying to turn into an addict even though my doctor doesn’t have me on any narcotics ( I even think my pain doctor thinks I’m trying to become an addict by the way he looks at me and says he doesn’t believe in prescribing opiates for fibro). I feel like I’m going insane, like an internal hell, I have constant pain, it’s in my upper and lower back esp and left hip and then sometimes it feels like it’s all over my skin. It halts me. I force myself to act normal to everyone. I don’t want to seem like a whiner or wimp. What’s happening to my body all of a sudden. I was a normal person before this. I’m 39 yrs old and my body hurts constantly and I have hospice patients I see that never have pain. I’m quitting my job as a hospice nurse because I can’t to the on call hours any more and I’m scared to death to go to work in the hospital again. It’s been 6 yrs since I’ve worked in that setting and I was younger and didn’t feel this way. How can I work for 13 hours and act normal when I feel like this? I called my pain doctor and felt so guilty when I changed my apt to next tues so I can see if he can change my meds again. He promised me he may try a Butrans patch if im still in pain. He keeps freaking increasing my Lyrica to help with pain, but I keep telling him I need a change in the tramadol, the only thing he did was change my muscle relaxer, but that was only because I insisted upon it. Why is it so hard to get someone to pay attention to me? I’m some freak, no one wants to listen to or seem to understand, I’ve lost my livelihood, my best friend, now here I am just some pain clinic person begging for pain meds just like the next guy. That’s all he sees. I’m in my own private hell. Isolated by pain.
I am so sorry you are dealing with all of that! The pain and exhaustion that we deal with is sooooo very difficult to describe. I have often said to my husband that I wish we lived in some futuristic time in which a machine could quickly scan our body and have the pain somehow “monitored” or “transferred” so that it could be visible…or understandable…or feelable (if that’s a word :)). Lol! I can’t see that happening any time soon! Lol! But I do wish that there was an easier way to really show / describe what is going on within us. Some days it feels like my bones hurt…the pain is so deep and not anything that could necessarily even be massaged out… I take comfort in knowing that there are so many…thousands and thousands…of people that do understand this…and although we can’t act as a dr to treat each other, we can certainly be ‘family’ to one another and pull each other through the toughest of times with encouragement and understanding. There are some days that I lay flat on the couch…all day…with no energy to even hold a book, a phone, or a laptop to be able to communicate with people outside the walls of my home…and it feels like those phases will never end…but they do…sometimes it takes longer than others…and although it doesn’t totally go away, there is always some sort of reprieve…my search in finding a support group is to remind me that when it gets really bad, when I’m feeling like this is a battle I am fighting all alone…that there ARE people out there who care and who do understand…
Welcome to the group! I am like you in that I don't tell others about the fibro usually. I find a lot of support here and it also helps me when I can chime in and support others. I look forward to getting to know you! Hugs!
Thank you!!
Hi Shari, and welcome to the group.. I understand how hard it is to share this awful burden of fibro. It is hard for anyone to share especially with people who don't have a clue, heck its hard to help people who do understand, I hope you will find answers that will give you strength so that you can cope with this... best of luck. Jackie
Shari, I wanted to give you a warm welcome to our community! I can relate to wanting to keep Fibro to yourself. It can be alot to cope with as it is just managing symptoms and appointments and this misunderstood condition. It’s wonderful you found us and decided to let us in and come here for support and encouragement. Our members are engaged, kind and resourceful.
Hello Shari and welcome to the group, I am so sorry you have this illness, But I am happy for you that you are here because
I don't know what I would do if I couldn't come here and get the support and understanding from this group of friends and my new family, I am getting better lately at reaching out and saying how much I hurt because of the lack of support and compassion I get from my family and friends I thought I would always have. The Moderators here are amazing and care deeply about each and everyone here.. It hurt so bad to feel isolated and alone and afraid if you do try to say how you're feeling the remarks or advice or lack of compassion makes you feel worse than just keeping silent It is being a hard lesson for me to learn but the the more i get hurt and set back from the stress it causes the more I am learning to use this group to give support and recieve it and that makes you feel loved ,and valued, if I can be of any help please message me, as time goes on we will learn more about what we deal with and hopefully we all can find ways to deal with our symptons and encourage each other when it seems like we just can't go on another day, Because together we can .. Love and Blessings, Bobbye
You are all so kind!!! Thank you so much for making me feel so welcome! I hope I can be as much of a blessing to others as you have already been to me!!!
Welcome Shari
I am glad you feel you can start opening up here. I try and encourage others to open up ask for help when you need it and find the things that work for you to make your life better.
Thank you!
Welcome. Hopefully, you'll find another place (Here) where you don't have to hide anything.
I've only been here a little while, and I've found nothing but support, no matter what I say, feel, or write about!
For support, compassion, companionship and understanding, you're in the EXACT right place!!!
HUGS