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family responding to fibro in an interesting way - not sure how to handle it

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Posted 7/3/2009 8:35 AM (GMT 0)
I think my family (depending upon who it is) is either jealous or confused or thinks I am making this up.  I don't know how to handle any of it. 

With the people who think I am making it up or over reacting, I am careful about what I say.  I feel odd using a cane when I need it and don't say that the fibro fog is bother me, etc.   They are confused because sometimes I seem fine and other times I don't.  Because they act think I am making it up, I catch myself feeling like I ought to act sick when I feel fine so they don't say, "what the heck, you were fine a minute ago."   I don't want to do that.

The jealous ones are harder to explain.  One close family member suddenly has a lot lot lot of aches and pains and sighs and moans and looks at me with sad puppy face and carries on something awful.  It is really too much sometimes.  I understand aches and pains are real for everyone, but it seems like the aches and pains increased dramatically shortly after I was diagnosed and started trying to take care of myself by pacing and resting, etc.   There is one who keeps saying she thinks she has fibro because she is tired a lot and a little ditzy at times.  I told her that of course she is tired.  She is working two jobs and is going to school.  She walks around in 4+ inch heels and can run circles around me.  She seems to want to have fibro really bad.  Maybe she does, but it just doesn't seem like it.  I told her how to be checked out if she wants to see.

Then there is one who actually has the symptoms and I am not sure how to approach it because her sister is the one who wants to have it.  The one who might have it does not have health insurance and I don't want to freak her out by making a suggestion when I am not a doctor and could be wrong.

I don't want this and hate the pain, fog and exhaustion and sleepless nights (it is 1:30 am now).  I don't want people pawing all over me or feeling sorry for me.  I don't like it when hubby talks to others about my cane when I don't use it everywhere I go.  I was scared to use the cane (and wheelchair and scooter while on vacation) because I didn't want to look weak.  I try really hard not to complain.  Sometimes things happen that are fibro related and I say so, but it feels weird.  I want my old self back.

I try to give attention and lots of praise and all that to everyone, so these family members aren't lacking in attention.  Why would anyone want this?

I am confused.

 

Posted 7/3/2009 10:20 AM (GMT 0)
your family sounds like my co-workers ... I gave up and started acting consistently sick all the time so they would leave me alone.
I also had the people who would say "Well my finger hurts, so i can't ...." to make fun of me.
people always act stupid!
Posted 7/3/2009 11:25 AM (GMT 0)

I don't talk about fibromyalgia much except on this forum.  I don't want to because I don't want to constantly be thinking about it.  That just makes things worse for me.  I have a life to live and to enjoy, just like everyone else.  I just happen to have fibromyalgia. 

Your family knows you have fibro.  Don't act like you are sick if you are feeling fine.  If they mention about the fog being bad sometimes and not bad others, let them know it is a cognitive memory problem and it usually reacts to how much pain you are in.  Then drop it, Sue.  You've explained it to them.  Ignore any other comments or change the subject or walk away.  Only YOU know how you really feel and you really don't owe anyone an explanation.  So, don't feel badly or let this eat at you.   You can't change them and the understanding problem is with them. 

Sherrine

Posted 7/3/2009 1:26 PM (GMT 0)
Hi. I don't know how long you have had fibro but my suggestion would be to get as much information about fibromyalgia and have everyone read it. Print it out and lay it on the table. Make sure all the info is from respectable resources. Hope that helps, it's what I had to do.

Also, when anyone says anything to you about being fine one minute and using cane the next, just say, "well, it is a very unpredictable disorder".

One of the best things I did to feel better was to avoid people who said things like that. I know with family it can be hard but these were coworkers of mine I had to see every day. Finally, when I would come in and they asked how I was feeling, I just said, "Fine thank you, how are you?" And walked away.

As for those who have new aches and pains all of a sudden, really, isn't it just sad that their life is so unsatisfying that they have to make up stuff and compete for attention? Let them think they have it. While your pain continues, after a while they will get bored. Those who may have it, you did what you could, the ball is in their court.

I don't have to justify my pain and other sensations in my body to anyone and neither do you. Some people just don't get it and never will. Don't give them anything and they can't take anything away from you. Don't ever feel like you have to defend yourself.

Posted 7/3/2009 3:47 PM (GMT 0)
Sue, I have a distant cousin that I met through genealogy and we have grown close over the years and keep in touch, she lives in norther CA so we don't see much of each other except when she comes to Illinois to visit her mother and son. She knew I had some health problems and that is why I stopped having the big family reunions but I can't remember if I ever told her I had fibro. She called awhile back scared she had bone cancer cause she hurt so bad all over and said they were doing all kinds of testing on her. After she told me all the symptoms she was having I told her it all sounded very familiar to me cause it sounded like the fibro I have so I sent her some info and links to do some research. She has gone back to her doc and the only thing that showed up on all her testing was low B12 and vit D so she asked her doc about fibro and she said she wasn't qualified to give her a dx and set up an app with a rheumy for her in Oct that treats fibro. My point is if I did tell her I have fibro it didn't mean anything to her since she knew nothing about it til she started having all this pain and I got her attention real quick when I started telling her how I feel. I have said many times on here that I would not have comprehended fibro before I got it, I still don't understand it after all the years of living with it. Last night I was watching TV and my index finger and middle finger on my right hand started hurting like they were broken for awhile and it went away as fast as it came, I have no idea why.

 

I think we all know the attention seekers too, I've got a couple in my family that I wouldn't believe if they were dying unless I had proof from a doc.

 

My close family know what I have and some understand it better than others. If there are some that think it is all in my head I really don't care and they have not voiced it to me and they can keep there opinions to themselves.

 

We hurt and we know we hurt and that is all that matters.

 

luv and hugs

Marlee

Posted 7/3/2009 4:02 PM (GMT 0)
A lot of times it sounds to others like we are making this stuff up though ... I mean think about it ... if one of your co-workers said they could do something one day and then couldn't do it the next day, wouldn't you be a little suspicious too?
I used to attempt to lift things even though I knew I couldn't just to prove that I was willing to try.
Posted 7/3/2009 4:32 PM (GMT 0)
I think the idea of getting info about FM for family to read is good.  The mayo clinic website has good info that I've printed, my 14 year old daughter was just diagnosed this past Monday after years of ???.   I also told her that when people ask how she's doing to just say a generic "fine thanks" unless she feels it is someone who really cares & wants to hear how she really is! 

Posted 7/3/2009 4:39 PM (GMT 0)
Sounds like we all have people in our lives who respond in difficult ways. Only a few family members and a few close friends know I have fibro. If others ask, I just say I have a muscle disorder. I used to say that I have a muscle disorder and sometimes hurt and sometimes don't. but that explanation was too long for some people. The other response I give was from advice from someone here. If I am asked about the cane, I just say, sometimes I need it. Usually that is enough. If people press, I say I have a muscle disorder. My housekeeper pressed further on Wednesday so I said, and, if anyone bugs me, I can bop them on the head with it. She laughed and stopped asking.

When I did talk about it, it was only a couple of times: my son in law asked me what was the matter. I must have looked pretty bad because of a flare a couple of days ago. I said that I didn't feel good. He said, oh its the heat. and I told him no, it was fibromyalgia. then I felt silly for saying so. the other time I was telling my sister about the meeting at Davis and how I hoped the instance of fibrofog did not make me look dumb. but she didn't know about fibrofog and I said it had something to do with fibromyalgia. she didn't make me feel bad. I just felt odd because I don't talk about it.

I put the confusion on the other people. What I mean is I expect them to be confused. People don't say anything to me about it. My sis, nephew and I went to a musical this week. we were up in the balcony. I had to go down a few stairs and I felt fine, but I felt like I had to act like it was difficult because earlier when I went up the stairs, it was difficult for me to do. I felt the same thing at Disneyland because so many people fake injuries to go to the front of the line. I thought they would think I was faking I got out of the chair and walked.

I just have to remember not to worry about what people think. Do what I can when I can. I agree Choc Chip. I would be suspicious and that is why I am so sensitive about it. I care too much about what people think of me. Maybe this is a good test to get over it.
Sue
Posted 7/3/2009 5:31 PM (GMT 0)
We all have family members who act differently to our illness. My sister...at times she acts like she believes me, and others she acts like I am making the whole thing up just to get attention. *rolls eyes*

My mom. She believes me, but she has suddenly turned into a know-it-all, like she knows EVERYTHING about fibro and how I should be handling it. She will talk about other people that she knows who have fibro and how they work and are just fine. She talks about how I don't need pain meds, that the people she knows do just fine. I always wonder what meds those people are taking to make it so they CAN work, and I always try not to remind her that I am not them and that everyone responds to this illness differently. It is cool that my mom believes that I have this illness and she is really considerate a lot of the time, but she just acts like now she knows everything about everything about this illness.

So, everyone has family members who do weird things. My advice to you is to just ignore it. You can't help it that a lot of the time you seem fine when you really aren't. You can't help it if some people are jealous (for God knows what reason). You can't help it that you have this illness, and you don't need to apologize for it. Just be who you are. For some reason or another, you are going to make someone unhappy or unbelieving. But, that is their problem and not yours.

Posted 7/4/2009 12:55 AM (GMT 0)
Oh Statgeek you're wasting too much energy being stressed about how your family deals/thinks about you have fibro. My brothers don't believe me and says "it is all in your head". So because they are half a continent away from me I no longer have contact with them, and I feel so much better no having to justify the fibro.
Take care.
Posted 7/6/2009 3:46 AM (GMT 0)
Stari, you are so right. I waste way too much energy being concerned about what people think of me. I am learning, though. I suppose there is a difference between social awareness and being over concerned. Y'know, if I didn't have social awareness, I would chew with my mouth open all the time and fart in public! ;)

But it can be taken too far . . .
Sue
Posted 7/8/2009 3:10 PM (GMT 0)
What statgeek you don't fart in public???????????????? What do you do when you're out in public and to let a big one out? Personal I will walk by a man or women who has on the perfect out and makeup on and let it go. Of course, than I will walk by them and say"Wow! Who let that one out and look at them...ha ha
Posted 7/9/2009 9:19 AM (GMT 0)
Stari, I have know a number of women and girls who are taught to go to the restroom to fart. Especially if they are in the kitchen or eating. One family I know never mentioned it to the males but the female children were spanked! yes, in 2009 this happens. I find it strange, but they don't. I assume the women have very strong muscles to "hold it in".

For the jealous and disbelieving family: First print out the "Love Letter to Normals" (http://www.fibromyalgiatreatment.com/letter_to_normals.htm ) and the Spoons Theory (http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf ).

Leave copies in several places where they will be easy to pick up and read. Maybe even DO the Spoons Theory with the family member who bops around in 4 inch heels while acting like she has fibro, but doing it inconsistently. It may be that she sees she truly has fibro, just hides it super well, and the heels are her refusal to give in. Seems silly to me, but it might not to her. I held and office job and did the high heels thing most days because it was required. But it wasn't worth it.

When people challenge you, or look puzzled, ask them if they have read the Love Letter and the Spoons Theory. If not, grab a copy and hand it to them.

Above all, be true to YOU. Love your family, but if you waste too much time and energy worrying about what they think of you, then you won't be able to do as many things that are truly important.

I hope they become supportive.
Posted 7/9/2009 5:24 PM (GMT 0)
Haha, I meant loud juicy farts that obviously came from my direction!  I don't do that in public, if I can keep from it, that is!  eyes

The one who thinks she has fibro but wears those heels, I am convinced that she is legitimately exhausted from working 2 jobs and going to school.  Anyway, I hope that is what it is because that is a temporary problem with a solution, while fibro is forever.  Hopefully she will be able to work less hours soon so she can feel better.

I went out to Ikea with family members on Tuesday.  My mom, sisters and aunt were there.  They were great.  I used my cane and rested, but during one part of the store, there were no chairs so they gave me the shopping cart to lean on because I was so sore.  No one babied me, but allowed me to pace myself.  I really appreciated it!

Yesterday I started community service to pay off a traffic ticket.  I picked up cow patties in a butterfly refuge.  I did it for an hour and came home sore and beat.  I am going back on Friday.  My son in law asked how I am going to do it for 4 hours when 1 hour beat me up.  Hubby said to take it super easy today so I can do it tomorrow.  They were both understanding and helpful.

I think everyone who is important to me really tries to understand.   I think that I sometimes misinterpret actions of others, especially when I am in pain and not rational.  You all help keep me rational.  wink

Sue

Posted 8/3/2009 4:56 AM (GMT 0)
Neubie here. I was just diagnosed with fibromyalgia. Almost as relieved to finally know what it is as sad that I really do have the disease. Spoke to my x, (we have a very good relationship, he's 74 I'm 69) and he just blew it off like it's not real. He has come through chemo and cancer treatments so perhaps he thinks I have nothing to complain about. So I wrote him an e-mail as follows:

On to fibromyalgia. I was saddened by your response to my description of common symptom called 'brain fog."

It is not uncommon for family members, friends, or co-workers to discount some of the real manifestations of this disease. The most common is the observation that we do not 'look' or 'act' sick or disabled in any consistent fashion. That is in itself one of the most disturbing side effects. I cannot reliable predict when I will be able to function/ or not.

The Mayo Clinic has a website describing fibromyalgia. These pages are useful to get an overall impression:

http://www.mayoclinic.com/health/fibromyalgia/AR00056

http://www.mayoclinic.com/health/fibromyalgia-pain/AR00055

Many people are under the impression that these symptoms are a manifestation of hypochondria. Not so. But it's hard to cope with the poo pooing from those I care about.

I have long attempted to self-medicate with OTC stuff like ibuprofin, aspirin, etc. And I hurt, almost all the time. I stopped complaining long ago since it doesn't do anyone any good to whine all the time. I have become very good at denial, but it's getting harder as I get older.

My current problem is that I have exhausted all pain meds, the side effects have become life threatening or unbearable. That is also a symptom; extreme drug sensitivity. Some formulations work, other formulations of the same drug or the delivery medium can be not only ineffective but sometimes quite painful.

Now that I have a real diagnosis, we'll see if I can handle myself more intelligently. A little understanding goes a long way. Thanks for reading,
Posted 8/3/2009 6:09 PM (GMT 0)
It must be said, it must be reported, that this man apologized by return email in such a sincere way that he left me with tears in my eyes. I know that he has read the information I referred him to. I know that he recognizes me as a person.

Perhaps the lesson is that information must be free. The more we know, the more powerful we are.

Thanks for being a place to ... you all know what I mean.
Posted 8/3/2009 8:19 PM (GMT 0)
Hi Jesry,
I am glad you got a good sensitive response. Welcome to the forum. This is a great group.
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