I get overwhelmed with daily stresses but constantly explaining Fibro why I'm so tired, why I miss a lot of things the different aches and pains. It seems like they don't believe or they're angry with me. Am I'm the only one that has has issue. I am going to print off the spoon theory see if that helps. Any other suggestions?
Hi Aarchangela and welcome! I love your name, as it's the feminine form of my father's name. (He went by "Arkie.")
Oh yes, I think that most of us have, unfortunately, faced these battles. It's such a shame to suffer from the pain of this horrid illness without having to also suffer the shame of being accused of making things up.
Your experiences with fibro are oh, so familiar! All of those inexplicable aches and pains, the exhaustion, and the inability to go out to do much. I used to love going out to shop or taking long rides. Now my favorite place to be is home in my bed after I get home from work.
I'm so sorry that you're affected by fibro. It seems doubly unfair that young people, who should be concerned mostly about career, relationships and children, have to spend most of their time thinking about the non-stop pain and fatigue.
I see that you're on Cymbalta and Lyrica, and get deep tissue massage, so you're doing all that you can to get pain relief. Have you checked with your doctor to be sure that the dose you're on is right for you? I was put on a low dose of Lyrica for quite a while and it didn't help me much. Once my dose was upped, I felt some better.
The Spoon Theory really does sum it up. We DO have only a few so much energy to expend each day and we have to use it wisely or else it's gone and we're in an exhausted flare.
I always suggest that people print out some conversations from this site and give them to loved ones, so they can see that others go through what you're going through. Sometimes it takes seeing it from a stranger's point of view before it seems believable or real. I think it's because we're too close to and invested in our loved ones, so we lose perspective.
I hope it helps you to know that there are other people like you out there in the world. (Heck, I'm in the next state over from you.) Please keep coming back to read more about fibro and the people who experience it. I really do think it will help you to feel stronger and better able to cope when you see that others are in your shoes.
Gentle hugs,
Petunia
Thank you so much for this information. I already feel that this site is helpful so it's booked marked. Information is power in my book and I will try just about anything cause you never know what will work. Although, I have been able to avoid pain medication in time I'm sure I will be on it, I am not rushing it.
I do yoga also not as regular as I should from being to tired. I try to do it when I get free moments. Yoga really does help but I have hyper-mobility syndrome so some of the poses I go to far . So I need to stay focused. Ijust got on lyrica this Aug and cymbalta the oct I believe. So a med follow up isn't a bad idea. It is amazing then when I got put on both of these(same time) How much it dulled the pain. It's not gone but it toned down now it seems to be tapering off. Thanks for that advice-Good point :)
The deep tissue massage is amazing although it is painful as heck at the moment later after a long nap my body feels good. Unfortunately, my knots will cluster in different areas all over. Weird. lol
I do feel grateful things could be a lot worse for me this is the plate I was handed and how I deal/cope will define me.
I'm going on and on, Thank you for the support we all need it <3
Angel, you say that you do not even try to educate people regarding fibro anymore? It is because it is too emotionally exhausting to make the effort to provide them information or is is because it is too exhausting to roved info to people who read it yet still don’t believe that fibro exists.?
Such great information. Thank you
I just lost the reply I typed to you so I'll write an abbreviated version:
You're so welcome for the info. Information is power and feeling that you're not all alone with your fibro is also a huge relief.
It's interesting that you mention the hypermobility. Funny how so many people with fibro also have hypermobility to some degree or another. I'm starting to wonder if fibro exists simply because we've overextended our joints too much. At any rate, there is an illness called Ehlers Danlos Syndrome that some people with hypermobility have. It can lead to a lot of pain. I'm including a link because it might prove useful for you.
http://www.ehlersdanlosnetwork.org/hypermobility.html
Oh, don't I know about deep tissue massage! I wish I could afford to get it still, as it really helped me. You're right, it's initially quite painful but man do you feel better later on!
I'm sure that others will also include helpful insight. And thanks again for coming to our site!
Hugs,
Petunia
Angel has a treasure chest filled with good info on fibro! Seriously, she has given us many, many helpful articles. She's a great one to ask for articles that help to explain fibro.
Angel,
I completely understand what you are saying. I too have become exhausted from trying to explain my condition because when I go into the symptoms it sounds like I am just being a hypocondriac and whining. The few times I have either printed out information for someone or gave them a site to look up they didn't bother to read/or look it up. So if they can't waste their time to read a few sentences that would help them to understand I certainly can't, and don't have the energy, to waste mine trying to explain.
It's very sad.
Oh, aarchangela don't/haven't we all!
When you print out "The Spoon Theory" you might also want to print "A Letter to Normals". I see you've already gotten the excellent "My Name is Fibromyalgia".
Personally the "Normals" piece really opened one of my son's eyes. We like each other a lot better now.
God bless us, everyone.