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Posted 11/5/2008 11:41 PM (GMT 0)
I was recently diagnosed with fibro. I've been sick for almost a year. I feel awful. Honestly, I'm 28 and I live in my parents' basement because I'm not working right now (working on that). I'm just feeling down, they've done a lot for me, but my dad thinks fibro isn't really really real and is confused. My mother just stays on the internet for a "cure." They think now that I have medicine I should magically get better,  and my grandmother even called me a hypochondriac in front of extended family Sunday. I just feel so alone and I want to talk about it, but I have no one at this point. And I've had a very bad time pain wise.
Posted 11/6/2008 12:09 AM (GMT 0)
Hey, there Hil323. I'm new here, too, and just diagnosed yesterday. I have found, in just a short period of time, that this is an extremely helpful place to turn to. As you have probably figured out by now, those that don't have FM can't understand it. That not only goes for family, but for the medical profession as well. I had a doctor tell me my problem was that as a work-outside-the-home mom, I was simply too stressed, and to learn to "de-stress" better.
Don't listen to your family. Or better, if you have a printer, please go to the Fibromyalgia 101 and Rescources link at the main page. I was directed there by one of the wonderful mods on here, and there is a link "Doctors Respond to New York Times article". It is so insightful and spot on-print that off and show it to your family. Those that don't believe it choose not to believe it, and you can't make them change. What you can do is change how you let them affect you. Just because they are family, doesn't mean you have to always like them, lol!
One of the pitfalls of our little problem is depression, so please don't ever feel alone. There are countless friends on here that will jump in at a moment's notice to help lift you up. I truly wish you the best of luck, and keep in touch. :-)
Posted 11/6/2008 3:32 AM (GMT 0)
Some people will understand and others won't - you can't make them understand but you can try to educate them - if they are willing do try to print off some information either from the resources here or elsewhere. If they aren't willing, try not to let it get to you. YOU know it is real. We all do. Turn here for your support and a shoulder to lean on - there are some great people here. Maybe in time they will come around. I know my dad has refused to admit that anything has been wrong with me my entire life. He also thinks that I shouldn't be on any medication and my medicine is causing my pain. He isn't the brightest person but half the time I think he just doesn't want to admit that I really am in as much pain as I am so he denies it as much as he possibly can. But anyway - like I said you have a rather strong support group here even if you can't physically see us - I know it has helped me a lot over the last few weeks since I discovered it. Keep trying with your family but try not to get too discouraged - but if you do, come on here and talk about it. Keep your hopes up.
Posted 11/6/2008 5:24 AM (GMT 0)
I'm so sorry you are in a bad place right now. Once you learn some coping techniques with the pain, I'm sure that things will become brighter for you. I'm not officially dx yet, but I have had symptoms since May. I was really hard at first for me to accept my limitations, and to even believe myslef what was going on in my body. I still have times when I feel good for a few days that I tell myself I was making it all up! But I do remember how hard it was at first, I didn't see an end to it, no hope. You will see that this forum can bring you that. The people here really do care, and we are all here to support you when you need to vent. In the meantime, read and get some information and insight. What helped the most for me was knowing I wasn't alone. Good luck!
Posted 11/6/2008 8:49 AM (GMT 0)

I was diagnosed with Fibro at the beginning of this October. I'm having a hard time explaining to my family and friends aswell as my co-workers/managers/disability peoples/doctors.

It's not an easy thing to get people to understand what fibro is when there is so much ignorance about fibro. Fibro is a difficult thing for people to understand because it's hard to relate to. I used the SpoonTheory when I first started having problems communicating what was going on to the people who I cared about - honestly this isn't an easy thing for me to handle - and even today I was in tears over the ignorance of those who are suppose to care about me. All you can do is present to them what reality is... and have them decide for themselves. You can not forcably change anyones attitude towards this disease than your own without being able to communicate exactly what is going on... and by communicate I mean offer information in the hope of understanding... not necessarly success.. because some people are just stubborn.

:) Good luck with everything!

:) I wish you many spoons ;p

^^and I apologize for the terrible sentence structure^^

Posted 11/6/2008 12:50 PM (GMT 0)
Im so sorry your having such a hard time, its so much worse when love ones think your a hypocondriac I know because it was so bad with my father and his wife giving me such a hard time I had to make the decision not to see them, and to be honest  long term I feel better for it.  No one will ever fully understand but at least they can try.  It took 3 years for my husband to fully understand.  And as for the internet holding all the answers yes it help me understand but did nothing to take it away, only unfortunately will the meds do that and not all that well.   Try get medical suppport then the family may take it more seriously also.  All the best to you.   sue2z mad mad
Posted 11/6/2008 2:04 PM (GMT 0)
I'm so sorry that you are having to deal with all of the negativity and skepticism in addition to the pain.  If only the "non-believers" could walk around in our bodies for a day......

 

There was a time when the very idea of germs was inconceivable to the medical community (and I use that term loosely).  When the microscope was invented, people finally believed in what they couldn't see. 

 

I'm hopeful that soon there will be a tangible "test" (other than just the diagnostic criteria) for fibro. so that everyone will take it as seriously as it deserves. 

 

For now, just try to hang in there and be patient with the doubters.  Hopefully, they will become educated and accepting.  No one would choose to live like this.

 

Hugs - Austen

Posted 11/6/2008 3:55 PM (GMT 0)
Hi Hil and welcome to the family. It's hard in the beginning with fibro cause your trying to understand all this yourself and accept it and than when you have family that doesn't believe and refuses to be educated on fibro it gets very frustrating and depressing sometimes. There is probably going to be some hurt feelings over it cause there are some that will never understand it or even try to understand it but we can't let those people stress us. We know how we feel and we know this is real. I have some family members that never bring it up and ignore the fact there is anything wrong with me. I have some that try very hard to understand what it feels like to have fibro. It's the same way with friends. It's not fair that not only do we suffer greatly we also have to put up with the non believers.

 

Hang with us Hil and you will get all the support you need.

 

luv and hugs

Marlee

Posted 11/6/2008 4:44 PM (GMT 0)
Hi Hil :) I had to do the same thing when I moved back home and ended up in the basement. . . It was better than the streets, nursing home, or flop house? Anyway, some people are just insensitive and don't care, and others are so scared of something the don't know, they have to put up a front, sometimes bad. . . We have to learn to deal with these types of people unfortunately, because they are everywhere. But try to keep chipper, and things will work out :) It's nice to meet you by the way :)
Posted 11/6/2008 6:45 PM (GMT 0)
I have had chronic back pain from an injury for eleven years. I got a spinal cord stimulator in March and had high hopes that it would diminish my pain and return my life back to a somewhat normal existence. I DID help me tremendously, but soon after I had it implanted, I began having HUGE symptoms of fibro. I had talked up the SCS so much, how it was going to change my life (our lives) that when I started having the fibro symptoms, my family didn't want to except that I was having problems that would keep me from being productive. It's a daily struggle to keep my head above water with the symptoms, but trying to convince my family that I JUST DONT FEEL GOOD, is an even bigger struggle. They want for me to be able to take care of the house, the cooking, cleaning, laundry, shopping... you all get it. I wish that they would finally just GET it and give me a break. If I'm not able to cook a meal, they give me a hard time and I feel guilty and get up and do it, driving me to tears just trying to complete the task. Afterwards, guess who gets to clean the mess? You know it! If there is a magic potion or some magic words to say to help them to get it, please pass them along to me!..... end rant!
Posted 11/6/2008 7:14 PM (GMT 0)
Hi, Hil, and welcome to the forum!  I see that you were directed to the Fibro 101 thread.  Try to read all the different links.  There is a lot of good info in them.  I'm partial to the "Doctor's Respond to the New York Times Article."  It really explains all the difficulties with fibro and these are learned doctors, to boot!  Also, The Spoon Theory and a list of symptoms are on there too.  So heat up your printer and get printing!  yeah

This is a very real illness.  I have had it for many years but I have learned how to control the pain and fatigue and have lived a full and ejoyable life with fibro!  I take ibuprofen and Tylenol for my pain and malic acid/magnesium for pain and fatigue.  You can read all about malic acid on the Fibro 101 thread.  I pace myself when doing things, too.  You need to use your head and not plunge in and do things the way you used to.

 

Hot showers and moist heat feel really good and many use a Bed Buddy.  They can be found at Walgreens and elsewhere.  You heat them in the microwave and they give off moist heat.  You really need to keep moving with fibro.  If you sit or lay too long, you will be stiff as a board.  Walking and water exercises are really good for fibro.  

 

Read posts and ask questions and we will be here to help you.  I'm so glad you joined in and I'm looking forward to hearing more from you soon.

 

Sherrine   

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