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Posted 11/12/2008 9:38 PM (GMT 0)

cry  I'm so mad right now. I've been having some problems that wound me up in the ER the other night. (Terrible pain in my left lower side) I thought it was kidney stones, (had them before when I was 8 mos pregnant) but it wasn't and all tests showed nothing. My follow up was today with my general Dr who thinks it could be the onset of Shingles.

So my husband was telling my sister about it (he saw her in the store) and they were both saying that I have a low tolerence of pain!!!! mad

How the heck do they know or understand what my tolerance is with Fibromyalgia. I told him that they were both un-educated in Fibromyalgia and that it really bothers me when my family makes assumptions based on what they think about me. I know they love me but it just burns me up when I hear things like that or "Its all in your head". I love my family but then they wonder why I keep to myself....

Anyone else have to deal with this??

Posted 11/12/2008 9:52 PM (GMT 0)
It can be so maddening but, look on the bright side.  At least they believe you feel pain!  Some people's friends and families just think they are hypochondriacs or faking it for attention.

 

You know, with something like fibro, it's difficult to understand unless they walk in your shoes.  You look fine, yours tests are fine, so they jump to conclusions.  I don't even bother trying to get people to understand because I know they never will...unless they come down with fibro.  I don't think I would have understood this either before I developed it. 

 

Fibro is a very confusing, almost mysterious illness that makes no sense to anyone.  That's why this forum is so great.  We DO understand and it makes us feel validated.  So, just let it all out.  We know exactly what you are talking about.  Then just forget it.  It's like beating a dead horse to get people to truly understand.

 

Sherrine

Posted 11/12/2008 11:55 PM (GMT 0)
Dear Hope Girl: Wow can I relate. My GP said exactly the same thing to me a few months back."ÿou have no tolerance for pain". Well folks, maybe if I sprained my knee, and it became less painful after a week or so, yeah, I guess you could say I'm a wuss for making a big deal about it. But try a strained body, day in and day out for years and years, not such a wuss then eh? I don't think we should judge people untill we've stepdanced in their clogs.

Posted 11/13/2008 12:04 AM (GMT 0)
Monica~
So sorry to hear about your recent health woes... Even more, I hate to hear that you got frustrated with your family because they are being insensitive. I agree with Sherrine, people that haven't experienced fibro and all that goes with it, just can't understand what you are feeling. Fibro is such a vicious and relentless disease! It would be so nice if our families could be just a bit more sympathetic to our illness. It hurts to have to struggle through each day and also try to "feel fine" or look like you feel fine. I know I try to act like I'm OK so they don't have to see me hurting or asleep so they think that I'm OK and expect WAY more from me. I understand that they miss who I used to be, but I miss who I used to be also.
I hope you feel better. Take care of yourself and get some rest. Come here to talk about what you are feeling because there are a lot of people who are having similar symptoms and emotions... Have a good evening!
Posted 11/13/2008 1:56 AM (GMT 0)
Im so sorry and so very angry.  How very hurt you must feel. I hope you talked to your husband.  My mother in law suggested I was exagerating my symtoms for attention, I no longer see her, and I feel much better for it.  Its so important to have family on side but none of my family understand though after the three years of it my immediate family understand,  Hope you told her off....  sue2z mad mad
Posted 11/13/2008 2:54 AM (GMT 0)

I really feel frustrated for you.  This is a touchy subject for me, because my family has mixed reactions, but the truth is who could understand or truely believe what we experience if they haven't themself.  I have to say I am with Sherrine about not bothering to get into it with people that can't understand, but on the other hand, it does hurt when family suggests that either they don't believe you or your over exagerating.  That makes me angry.  It's the lack of respect that Fibro has.  When someone is diagnosed with MS, people believe, feel sorry, lend a hand, etc.  It's just not ok and I'm sorry for all of us that have trouble fighting the stigma on top of doctors, meds, work and family.

I take my husband to all of my appointments.  For one I don't remember things well, two he remembers things that I want to talk about, but mostly to help him understand how real it is.  It has helped him a lot.

Good luck,
Tricia

Posted 11/13/2008 4:01 AM (GMT 0)
Unless you have fibro it is really hard to understand how painful it is. Most people think of pain as acute and temporary. But when you awaken several times at night just because your body turned over in the bed or worse, because you are hurting from sleeping in one position, it is bad.

Let's not even mention how you feel during your waking hours.

We are gong through a time when technology, which feels no pain, is considered more important than people, who have feelings. Maybe compassion will become popular soon. I hope so. Our population is aging fast and more and more people will hurt in due time.


For the really mean folks I just keep thinking that they will be over 50 years of age one day. Half the folks will have arthritis. At least 50% will understand chronic pain. We are not alone.

Donnaeil
Posted 11/13/2008 6:47 AM (GMT 0)
I had this lack of understanding from my own mother. She berated me and was impatient with my "whining" my whole life so I quit telling her about the pain. As a child I cried myself to sleep so many nights that it finally occurred to me I needed my rest... and the tears weren't helping. Well, as karma would have it, she has developed fibro. Now she is the one doing the whining and I'm the one telling her to buck up and cope. I try to be more understanding than she was but as I told her, I wouldn't wish this on my worst enemy.
Posted 11/13/2008 4:31 PM (GMT 0)

Monica,

 

It really sucks when the people around you don't believe or understand how much pain we go thru. My family still does not understand, but I am done with trying to make them see. It just isn't worth the stress, so for now I quit trying and hope some day they will get it.

 

I even tried to get my dh to go to my appointments with me. He thinks my doctors are all quacks and are just giving me pain meds to shut me up! He acts like I chose to be this way. So, for now I just hope that some day people will understand more about Fibro and the different ways if affects our daily lives.

 

That's why I love this place. You can always find someone who is going through what you are and willing to give advice, sympathy, or just listen when you need it!

Right now, I am just happy that I finally have an answer for all the years of pain and problems that I always had and found others that share the same thing.

 

I hope things get better for you, but don't let it get you down. One day they will come to understand what you are going through! Hugs!

Posted 11/13/2008 7:05 PM (GMT 0)
Monica there is no way I would have ever understood fibro before I got it. There are so many different aspects to fibro if I didn't feel each and everyone of them I would think you were all nuts when I read these post.

 

It is hurtful and frustrating when those we love can not understand what it is like living in our bodies. People can see how I have changed by all the things I can no longer do or I should say no longer have the energy to do. There are some that know I hurt, those are the ones that also have pain of their own to deal with. I don't blame people for not understanding this. I think the most hurtful ones are the ones that have read that fibro is not real and it's all in our heads. I've had some nasty thoughts about those and would like for them to feel what I feel everyday for awhile. It is hard to deal with fibro but then when you have some medical population saying it's not a real disorder it does make you angry.

 

We are here and we know how you feel and you probably have a higher tolerance for pain than those that are saying you don't have.

 

luv and hugs

Marlee

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