I could not figure out how to post. Lol : ) I’ve replied to some on here and I hope it helped. I am 44 years old soon to be 45. My name is Lisa . I have two grown children. My youngest will be leaving home next month : ( I genuinely care about people and and have done my best to help others in my lifetime always putting everyone else first. I believe I started with fibromyalgia in the year 2000. Being more tired than i should of been, not being able to go to sleep and things in general were taking a lot out of me. I was always a tuff cookie about everything so when things started to happen I kept brushing them off. In 2002 ?- I was seeing a neurologist for my neck and wrists. It was then that they were checking me for MS. I had seen my reg doctor because of jaw pain and he said I had TMJ. In 2004 I had a full hysterectomy. In 2005 I had trigger finger. In 2007 I was now having lower back issues along with prior problems with my neck. The same year I had a bad fall down the stairs. When things were to hard to ignore, I was seeing another Neurologist. I believe I was diagnosed in 2010 with fybromyalgia. Unfortunateley I have not had the support with this. My husband daughter and son don’t get it and that I know of, they haven’t read one thing on fibromyalgia . The rest of my family , they don’t talk about it or ask me any questions about it. My dad just asked me today what I’m feeling when I’m in pain. So, all my life I’ve been there for everyone and now I need them and where are they? If I ask for help I get attitude and resentment. It’s so sad. Hope to make friends that will share with me. Thanks for reading Lisa
Hi Lisa, I can relate to EVERYTHING you said. Not one family member or friend care to read anything about Fibro. and they think I'm just lazy and it's because I don't excercie!(spelling) I'm in tears just reading your post. I'm having a full blown fibro problem right now so must go. Take care of yourself. Gentle hugs, Tawnycat
I’m so sorry your going through this too. I don’t wish it for anyone. I am here for you whenever you need me. Yeh I know, I’m a stranger but I’m a stranger that doesn’t think your lazy or that you need to exercise. My closest sister told my other sister she thought I was faking all this. She broke my heart. I’ve never confronted her. I heard this over a year ago. I’m sorry your having such a hard time with pain and I will pray for you. Lisa
P.s I would like to do a friend request if that’s ok
Welcome Lisa! I totally relate. My family tried to be supportive but they don’t really try. My husband says all I talk about is my illness which is untrue. In fact, I kept it from him for over a year until he realized I was going to the Dr a lot. My.12 year old is always angry with me because most of my free time is spent in bed. Ugh…I.give, give, give until there is nothing left to give. Then that deepens my frustration and water works.
Wow I can relate. Im very blessed to have my oldest daughter that lets me vent to her and she is very compassionate. My husband seems to tolerate me. I stopped telling him I hurt cause I just get " u always hurt whats new". Its very early n the morning iv only got 2hrs sleep cause the pain n my lower back and shooting down my leg into my knee is literally draining me mentally. Im 43 an think im way to young to hurt this bad . I use to think I was going crazy now i no I am. Lol. We really would like the pain to stop for just one hour would b nice just long enough to gain back r sanity. Im here if u need to vent bitch , advice just a shoulder im someone who cares and u can say anything to me. I will listen and do my best to support u and help u mentally deal with the people around u. I wish u the best and remember ur not lazy and only god may judge . Ur not crazy just dealing ith some crazy pain. Now smile and the world will smile back. Even if u do it with ur teeth gritted together. Gentle hug.
Hi Lisa ,
My heart truly aches for you reading your post. It sounds so much like me and I imagine lots of the people here on this site. It makes you feel unappreciated and kinda alone in all of this. Well I am here to let you know that you are not alone. We are all here and although I am new to the site as well I have found great support.
It helps to meet others who are going thru the same thing or similar. Unless someone suffers from this I really do not think they understand what is going on. I hope for you to learn all you can and try to enpower yourself a bit with the knowledge and experience of these fine people on this site. That is what I plan to do. I am hoping day by day I am better able to cope and the sun starts shining a little brighter for all of us here. Big Hugs Lisa
Oh my goodness, My heart goes out to you. Our histories sound nearly identical-MS scare,TMJ,Bad fall down stairs. I am also 44. Sometimes it is eerie to see so many things that are so similar. I am new on here also. I can say that I have the full support of my wonderful husband and kids even though it took many years and I just can't believe how difficult it must be for you not to have that support system. Talk about add insult to injury. Please let me know if there is anything I can do. I'm not sure why, but just reading posts from others helps me feel more in control of things and definitely not as guilty. I hope it does the same for you.
Hi Lisa, welcome I've not been on this site very long, but have found it very helpful. Try to get your family to read a few things on the site, maybe then they will see fibro is VERY real. I'm sorry you've been through so much, and am here when you need to talk. Charlie :)
Hi Lisa,
I also can relate to the other people not understanding what's going on with you. It just goes with the territory, unfortunately. Seems odd, but if you think about it, way back centruries ago when someone had an unexplainable illness, they were labeled crazy or cursed and sometimes banished from the village or, worse yet, eliminated. So I guess, in a way, we're lucky we live in the present time. :') Sometimes I feel banished, but we all have one another here on the forum so that is what I focus on, because it can make you feel lonely sometimes when people look at you like you have ten heads. Just focus on doing what is best for YOU. Supplying others with some literature on fibromyalgia can sometimes be helpful. That's all a person can do.
Your not alone by a long shot. It's great that you found this forum. It's a lifesaver.
Hugs to you,
Ally
A couple of things like the TMJ make me think of Ehlers Danlos Syndrome. I have the hypermobility type of EDS. I'm not a medical professional at all but you might want to check out the EDS info just in case. A lot of medical professionals aren't well versed in it because they think it's really rare. EDS is a genetic connective tissue disorder that causes the body to make bad collagen which is everywhere in our bodies. Here are a couple links about it
http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html
http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
You may not have it but it doesn't hurt to check out the symptoms. EDS really needs more awareness. Hope this helps a little
Susan W
Hi Lisa,
I totally understand what you are sayin. My family ignores my disease as well..except for my sister who has MS..(which is the sister disease to FM) we share alot of the same symptoms. I am going to ask you for your friendship..so we can discuss things more privately...if you wish!!!
Warm Hugs
Jesse oxo
Hello my friend. I am also 44 soon to be 45 and I have a daughter who is a junior and will, before I know it, be off to college. I will be alone with my disease, my poodle and my decisions. Unlike many who have responded to your post, I have a sister who often checks in on me (granted, she is a nurse, so she knows FM is an actual condition) and is supportive. But I also have parents who are clueless and too "old" to be able to do anything that would help, so they pretty much don't bother. I live three hours away and at this point, that is too far for them to be able to drive, bus it or bother about seeing me or their granddaughter.
I also have another sister who would be happy if she and I never spoke again. Her favorite quote regarding FM was that if she had it, perhaps she would miss a morning of work but then she wold be right back doing what she needed to do to support her family. Basically, she thinks FM is a joke...over twenty years later she still feels the same way. I've had three major back surgeries without a single visit from a family member. Hell, the sister who is a nurse once stopped speaking to me for six months because I sent a condolence letter after her dog died. Yeah, I still don't get it.
You know what they say, you do not get to choose your family.
The bottom line is that you have to learn to depend on, first, yourself and, next, the people around you who bring positivity into your life - that includes your doctors!! People on this site are terrific and happy to spend time with you to help out and give perspective.
Welcome!!!!!!!!! I hope this site helps provide a place you can go to for affirmation or simply a shoulder, if needed.
Marc
Hi Lisa and welcome! You've come to a good place to find help and friendship. You'll find lots of people here who understand what you're going through as no one else can. I was thinking today that the government should make a concerted effort to find out what causes fibro because they could use it as a great weapon against our enemies!!! Imagine, most folks wouldn't last a week with it, they'd be blabbing out national secrets in order to "make it go away."
May I suggest that you print out a few of our conversations and hand them to your loved ones? Sometimes it's easier for people to accept something difficult if it's said by a stranger, rather than a loved one. Or perhaps you could give them some info on fibro as "homework." Or else perhaps ask your doctor to hand it to your husband, as it might seem more "official" if the doc gives it to him.
If nothing works, then just keep coming back here. There are so many people here who can understand and will offer you support.
Thanks for sharing your story and I'm sorry that you can't find support at home. I truly hope that changes for you but if not, at least you have an alternative.
Gentle hugs,
Petunia
Hi Lisa, I am so sorry to hear that hon and I relate entirely. Fibro has affected every part of my life-
My boyfriend (who I thought was the love of my life) of 8 years left me because he couldn't understand the amount of pain and fatigue I was claiming to have and thought I was lazy and maybe even crazy. When my sister gets frustrated with my complaints, she says the fibro is my fault for not taking care of myself and that I should stop complaining because I brang it on! The people I work with resent me for not being able to multi-task like they do.
All of this lack of understanding and support can sometimes make the fibro seem like puppies and rainbows!
I used to get very upset about it and curse them all in my heart, but now I am learning to rely on myself for support and positivity and of course, YOU all! I have alot of hard, depressing days, but it's funny to me how the fibro has a way of making me focus inward on myself more and not so much on taking care of everyone else- especially the ones who just don't make enough of an effort to help or understand. I like to consider this fibro's silver lining.:)
P.S. Petunia, excellent advice about printing out some of the posts to give to family and friends who just don't seem to get it!
L.
This is to bad that we don’t get the support because people don’t believe us cause they can’t see it… But you can’t see a heart attack either… When I talk about my pain my mother in law rolls here eyes…she recently went through a really bad depression and I never once said its all in ur head… This site will help u vent and to get some support…I can’t come there and do anything for u put I’m up for chatting!!!
Next time your mother in law rolls her eyes, be sure to bring up how fibro causes depression then maybe she'll realize how much you have in common once and for all!
L.