No one believing
caroldenhamclark posted:
I have had fibro for quite sometime. My coffee group does not believe in it, especially one "LADY". She snubs me but I put up with it just to have some social live at all.

I have other things now so FMS is never mentioned. i don't know if my children even believe. My daughter and g.daughter did not when I first told them and it was agonizing for me to hear them. It is never mentioned any more by any of my family. I just be still.

I have meds. for it but it is still there. It caused me a lot of depression at first. Was not even certain my late hubby believed and he got very angry at me if it was mentioned. I have suffered so much hurt because of this mystery illness.

It is good to know that I am not alone with hurt.

Bless you and keep your chin up.
Caprice_WebMD_Staff responded:
I'm sorry for your need to be here but I'm glad you found us, Carol. (((softhugs)))
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
xperky responded:
You have come to the right place. I hope your other illnesses are not too serious. I guess people are conditioned to only trust test results and concrete evidence, but that is surprisingly rare in many illnesses. We understand here.
With Compassion,
1wareaglefan responded:
Carol, I'm so very sorry you have no support at home. It's a horrible feeling. Nobody much in my family mentions it either, and I don't think my husband likes to hear about it. I guess b/c he can't "fix" me.

That's what's so good about this support group and others like it. Here we get the encouragement and understanding we need. I pray that one day this illness gets the respect it deserves.
booch007 responded:
Dear Carol,

It is so hard to have anyone understand the issues we carry. The human is purposely made to forget pain. Think about it. Do you remember your labor pain when you had the kids?

Yes you remember there was pain...but not he actual quality or type of pain. So, forgive a bit for them. They have no clue....

We look good, they just don't get it. Mom's are not supposed to break down, they are supposed to always be there and have what ever they need ready, like when they were children....

My best move was bringing my husband to the neurologists office for my trigger point injection session. He SAW each spot and how many and also saw me getting the shots to be better......(who would do this if they weren't in trouble?)

When we left there, he said "Honey...I am so proud of you"
He then (I know it) talked with my son's who always made fun of me.....a deep wound there...

He is my champion now. He defends me to anyone and it is so hard to understand and he forgets as well. I used to try and try and then explode when I needed to ask for help. It is so much better. I am not one who can say "I can't" It is very hard for me.

My children have asked me many times what is exactly wrong with me, why can I do something today but in 2 days I can't? It is confusing. I use my activity as exercise and try and use different muscle groups and rest they catch me doing things , then I ask for help and it IS VERY CONFUSING.

My suggestion would be to have someone come to the doctors office when she/ he examines you.....let them see* the sites. Hear the doctor.....then they can become your champion and explain it to the family too.

I almost gave up years ago, and it was my husband who sought out a physiatrist to help me.....he knew he was losing me to this......I did well with the knowledge I learned and the changes I made in my life. I was then given a grand daughter on my birthday and someone told me "God doesn't make mistakes....he is telling you something".GEEZ, they had no idea how poinant that statement was!

I hope you can get some information to the close family and teach them of this issue, have them come hear and read our posts and comments about this. Pick on the discussions under Dr P and print them out....have them read them.

Then it is up to them to believe, you have to accept that it is what it is, and not worry to live for them. Take your Day at a Time....and do the best you can for you. Eat right, drink water, take your meds and MOVE as much as possible.....

Draggin the dragon around is a job in itself! Good luck, you are not alone in this issue for sure!

Hugs from me, Nancy B