getting family on board

I have spents years with this diagnosis and now that I had the good blessing to have understandable doctors who try to believe me and our family Dr has been pretty much a god send.  A lot of the pain etc, etc, etc, is tough to deal with.  I spend most of the day trying to control it. I have also learned that I must have had this started back in my teens.  It sure would explain a lot of trouble I had in school.  I just wish there was something I could of done then.  But with years of trying this med and that med and physical therapy and on and on,  It just rips my heart out that my family can't understand any of this crap that happens.  To them I am over doing the pain complaints and just being lazy at times or ignoring what I should be doing.  The night before my son's wedding there were some issues and I tried to stay as with it as much as possible but the morning of the wedding I was completly paralized with pain it took several muscle relaxers and pain pills to get me up and going.  I don't know about some of you but I have also found what is an ache to some is greatly increased with this disease.  I am now the big pansy at my house.  If I had known it would be like this I would have insisted that all of my family go to all my appointments with me. I don't know it that would of helped or not. Of course with this extra stress things get worse and worse.  Now my husband thinks that his insurance is going to change and it won't cover my problems.  What may be more symptoms for me also has to be checked out for other problems.  exp. severe chest pains, which has been found out that is just my muscles tightening up, but had to have cardio gram and treadmill test to check my heart.  It is always let's rule this out before we chalk this up to what I affectionatly call my crap.  Any help fo the family that will not read the material or listen to information. 

Sorry so long but just needed to spill out to maybe someone that might listen

Hi, Rusty, and welcome!  Well, you are not alone when it comes to people understanding this illness.  Some doctors don't even understand it.  Friends?  Many have lost them too because of fibro.  I know it's not fair but the problem is with these people...not  you.  I have found that fibromyalgia makes it's "victims" more compassionate and caring individuals.  That is the type of person you want to be.

 

Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information about fibromyalgia.  Some of these may help your family to know what it is REALLY like to have fibro.  One of the links is called, Doctors Respond to New York Times Article.  It's really good.  Learned doctors that DO understand fibro explain what they think could be causing this and what pain we have.  Perhaps if they see this in black and white it might sink in a little.  Meanwhile, don't let these people upset you.  You know what you can do and the stress they are causing is causing you more pain. 

 

Be sure to read back posts because there is a world of information in them...things that could help you have more control over your pain.  Also, don't hesitate to ask questions.  We are here to help you.  I'm so glad you found us and joined in.  I hope to hear more from  you soon.

 

Sherrine

Spirit

Thanks for the jouranal idea.  You would think I would have come across that way before now.

I do think it might help my husband to understand more.  Don't get me wrong he is pretty good, at least he is still with me.

The  journal I think would also help my Dr.  and maybe my kids might  benifit from one.  I firmly believe that this "stuff" is herditary.  I remember my mother having a lot of symptoms that I have experienced and her Dr.s said it was arthritis.

Seriously, Thank you

Rusty

oh hun i know what you mean. In my past relationships i would constantly hear how lazy i was or this or that and i would just cry i was so depressed. Thankfully i have found the greatest man who tries to understand as best as possible! i hope the journal idea works for you. I was thinking maybe trying to find a support group for friends and family?

Rusty,

 

So sorry that your family does not understand,  it does make it harder to deal with our aches & pains when our family doesn't really believe anything is wrong! I've given up on trying to convince my family. It used to stress me out terribly, but it did no good to try and convince them. Maybe you can try to get them to go to your next appointment? Maybe if they go a couple times and actually listen to the doctor they might understand better. I tried to get my hubby to go to my Rheumatologist appointments with me, but he just does not want to go.

 

I also ran across something that you might want to have your family read. It is called " A Letter From Fibromyalgia". If you search here on the sight you can print it off and show it to them. I showed it to my family last year and maybe it helped them understand a bit better, but it was the last time that I tried convincing them of my disease.

 

Just hang in there and know that there are many people here if you ever need to talk or vent. I find that coming here really helps with my emotional stress and there has always been someone to help me out or listen. Good luck with everything and hope you get to feeling better!

                                                                                             Hugs!

                                                                                             Springfling

 

 

Hi Rusty, and welcome! I am so saddened when people think that someone is just being lazy. The pain and fatigue is really hard to get for healthy people. I still don't get it when sometimes I feel great, then halfway through a walk I feel like I will collapse. I don't have any words of advice, but I wanted to wish you luck with your family. They will only begin to understand when they are ready to. In the meantime, please don't feel guilty. It's not your fault.