getting family on board

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New Member

Date Joined Sep 2009
Total Posts : 5
   Posted 9/14/2009 11:50 AM (GMT -7)   
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

Regular Member

Date Joined Jul 2009
Total Posts : 236
   Posted 9/14/2009 12:59 PM (GMT -7)   
Hi and welcome to the board. . First I am sorry that you have had to live this life with Fibro.. I would not wish this on anybody .
I am sorry that your having problems with the family understanding ,I fear I really don't have idea's though.. except maybe one...  idea   
I keep a journal , I don't use it always ,. but I use it to track my symptoms. and how it affects my daily life. I had my dear husband read about 4-5 days worth. so he could understand.. let me tell you now he really pays attention , and will even stop me before I do something stupid and over do.. as some things I can do a little but have to stop myself before I over do.
I wish I had more for you .. I'm sure you will get more responses and maybe idea's .. I hope for you ..
I hope things get better for you . Take care tongue
Spirit ~

Forum Moderator

Date Joined Apr 2005
Total Posts : 17524
   Posted 9/14/2009 2:48 PM (GMT -7)   
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.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Regular Member

Date Joined Jun 2009
Total Posts : 439
   Posted 9/14/2009 3:40 PM (GMT -7)   
I am also fairly certain my fibro problems started in college if not in high school. I look back now and it jsut explains so much of the exhaustion I had.

New Member

Date Joined Sep 2009
Total Posts : 5
   Posted 9/14/2009 3:55 PM (GMT -7)   
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 turn

Regular Member

Date Joined May 2009
Total Posts : 58
   Posted 9/14/2009 5:54 PM (GMT -7)   
rusty, Just wanted to let you know that there are several youtube videos out there. Maybe your family will watch a couple of them with you, since they don't want to read stuff. Just a thought. I hope things get easier for you.
Mother to two wonderful boys and wife to the best husband ever.

~Fibro, Diabetes, PCOS~

** "Don't tell me to suck it up, do I look like a vacuum cleaner?"

Regular Member

Date Joined Dec 2008
Total Posts : 25
   Posted 9/14/2009 6:43 PM (GMT -7)   
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?

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 9/14/2009 6:44 PM (GMT -7)   
Hi Rusty, just wanted to add my welcome! You are among friends here, we all know what it
is like living each day with Fibro pain and the crazy fog as I call it.
Take Care

MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

Veteran Member

Date Joined Mar 2008
Total Posts : 519
   Posted 9/14/2009 7:01 PM (GMT -7)   
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!

Never regret something that made you smile!

Fibromyalgia*Osteoarthritis on Spine*SleepApnea

Menopause*RLS*Spurs on Spine*Allergy/Sinus

Regular Member

Date Joined Jul 2009
Total Posts : 236
   Posted 9/15/2009 5:21 AM (GMT -7)   

Good Morning Rusty

From Sunny Phoenix AZ .. LOL..
Glad you like the journal idea.. I read that somewhere when I first starting going to sites like this one. I guess its a real good idea for Doc apt also.. what I do is read through and summarize my symptoms for my Doc instead of having them read my journal. makes it easer for them.
and it helps me cause I can't seem to remember everything when I do go to the Doc. LOL.. just too much to cover in one Apt.
I have read its a good idea also if you happen to need to apply for SSD . just make sure you put in it how this DD affects your every day life. your struggles etc. what you can't do anymore. .
Sounds like your dear husband is trying .. this is a blessing , I bet it kills him seeing you hurt and he can't do anything to help.. I know it does my honey
I do also believe that this can run in familys... and its Sad you have had this for so long.. so many young people with this now.. you know my age.. I expect a few issues.. but someone young... not fair.. I do beielve God would  not give us more than we can handle... something in here we are to learn. I think anyway .
You know my grandmother had this we think also .. but at that time they did not have a name for it... now my daughter also has always had pain from age 12 up.
just thinking out loud . Sorry . idea
I still work Full time for now.. but I am Blessed to work from home. and do a split shift . work 4 hrs off 2 and then back on for another 4 .. its all I can handle ,But Praise God I can still do it. turn turn turn
I Have Been blessed with a family that really tries to understand this.. My daughter is in school for massage. and is specializing in Fibro Massage.... Sweet Hu... my Dad , & Mom have educated them self's , and of course see the struggles.
my dear husband he is just the best. and I have a couple of friends . Don't need more than that. LOL. 
I hope your family can be of good support for you .. we all need someone . I really spend more time here talking about symptoms. as I don't want to always be telling my family just how I feel... they see the hurt and fatigue , so I come here to ask questions , get advise, support and just to plain VENT . LOL..
I pray today is a good day for you ... Take care my dear...
Soft huggles. tongue

Spirit ~

Post Edited (FMsaddenedspirit) : 9/15/2009 6:42:01 AM (GMT-6)

Veteran Member

Date Joined Jun 2008
Total Posts : 846
   Posted 9/15/2009 6:25 AM (GMT -7)   
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.
possible fibro and trigeminal neuralgia
50 mgs amitriptyline

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