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does fibro = prime time (imperative?) to make up with family?

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Posted 4/25/2013 5:13 AM (GMT 0)
urgh it's so annoying (to me) when fibro books say that

my mom thinks fibro = too sensitive = making big deal (moderate~ severe pain, disabled) out of nothing

she refused to speak to me and would only look at me with hateful glares (imagine your mom looking at you with hateful glares) for a while. she held a "secret" she thought "i did not know" ( "secret" being: fibro is all in my head) she blamed my debilitation (not only was i unable to attend some class of professional school, i was disabled after college) for troubling her marriage

this, after the two decade (well I'm 25 years old right now) of emotional, physical and other abuse suffered at my parents' hands

is anyone kind of in the same boat?
Posted 4/25/2013 2:37 PM (GMT 0)
People who never suffer long term pain doesn't understand how stressful and frustrating the pain can be. It's not always just the pain, there's the lack of sleep, brain fog, anxiety, etc to deal with.

My ex will use my condition to attack me. She will always claim that I use my fibro as an excuse. It's very hurtful.
Posted 6/19/2013 12:00 PM (GMT 0)
Well you know I might be in a similar situation to you. i'm a 24 year old male and i've had fibro since around age 9. It's more painful to be around my family than it is other people. There is a problem with having fibromyalgia and that is nobody understands you, including family.

People are mostly living in ****ing spiderwebs of delusion in their own brains. When you try to be open and honest to them to communicate what you're experiencing... they don't like what they hear, they don't want to consider that you're telling them is the truth; its easier on them psychologically to assume that the problem is with you, instead of with their inability to understand. So they'll say, "oh, you're just this "insert misunderstanding x", or you're just that "insert misunderstanding y" for infinite combinations of their understandable failure to grasp a foreign experience, and subsequent failure to even realize their own inadequacy.

So, no it doesn't surprise me that you're parents might respond to you're circumstances in the most common way people will respond. It's their responsibility as parents to protect and nurture you, and if they have failed in that respect then they'll prefer to offer their conscience blissful solace by shifting all of the blame for your misfortune onto you.
Posted 6/19/2013 12:23 PM (GMT 0)
Strange that just this morning, I was mulling over the fact that some old friends RSVP'd to a graduation party for one of my kids, but then didn't show up, phone, or send a card. Since they went to the trouble of RSVPing and even phoned for directions, this was surprising. Also had similar things happen with other friends, and after a while one starts wondering just who your true friends are. It just becomes too coincidental, and you come to realize there is more to the story. Anger? Turning on you? Misunderstanding? Are they hurt because you couldn't see them more?  Maybe all of the above.

I think it's similar with relatives. Unfortunately, because we can't be all things to all people, this medical condition sometimes allows us to be terribly misunderstood and disrespected. I think regarding family, it's sometimes the worst, because it always seems to put us in a vulnerable position and at a disadvantage. Even old grudges from childhood can surface and it isn't pleasant.

I've had to bow out of gatherings because I couldn't even walk or was in too much pain. We fibromites understand that, but it sure seems hard for friends/relatives to "get it," for whatever reason.

favoritesong: So sorry you have been treated in that way. How hurtful! Know there ARE people here who DO understand and care. I do hope and pray the day comes when everyone will understand what we are dealing with on a daily basis, but I won't hold my breath! Too, there are people who don't even try to understand, so it's refreshing to even find one or two non-fibromites who understand. I've lost some friends because they never knew what I was going through. To this day, though I try to keep in contact, I am ignored. It hurts, but I've come to realize it's their problem; not mine.

As was said above, it's easier on some people psychologically to assume we are the problem; not them.  Pride enters the picture, and let's face it--we fibromites are easy targets!  Our poor health is invisible, so they draw their own conclusions as they choose, and we are at a disadvantage.  Not fair, is it?  I don't know how I would survive if I didn't believe that in the end, everything will be equal.  We have our problems and they have--or will have--theirs to deal with. 

Also, some people need others to be their scapegoat. This sounds like what your mom is doing. So sorry she has done that, but she has no idea, does she?  Perhaps she has other issues she is dealing with?

 I don't know about your mom, but some people I know seem to take it personally that I don't want to spend time with them, though I've tried to explain fibro to them. I've been asked to go check on elderly family members 25 miles away when I couldn't walk or drive!  But you know what else?  If they continue to harp on me, whine, etc., then hmm.....DO I want to spend time with them?  I like to spend my time with people I enjoy and who are positive, not quizzing me about my health or trying to give me constant advice on how to better my health. I've found when relatives/friends are being difficult and not understanding, some space may be good.  I've not yet booted anyone from my life, but again, some space may be good, and the person may come to realize they need to be a little nicer!

  Prayers for you.

Posted 6/19/2013 2:02 PM (GMT 0)
You cannot control the actions of another person. You can only control your own!

So, let Mom's reactions go. Smile sweetly when you notice, and change the subject. Do not talk with her about your problems. Unfortunately, her silent condemnation also equals a reduction of space she takes up in your life.

That's just my opinion. I do not do negativity anymore. I get sucked in and then have a hard time getting out.
Posted 6/19/2013 2:19 PM (GMT 0)
In my case, its because my mom more severe pain since she has 6 herniated discs and arthritis and I don't have that. So I always get the "you're just not strong enough and you can't deal with anything" speech. Every single time I have a flare-up and want to rest I hear this: Look at me, I'm worse and I'm not resting! (Of course, she took a bunch of pills that will give her side effects later on in the day)

How do you argue against that?
Posted 6/19/2013 2:30 PM (GMT 0)
It's merely a different way to manage the condition, really. People are different in their approaches and the choices they make. My best advice is try not to get into comparisons of pain or hurt-they never end well and everyone feels worse than before they started. When she starts, smile sweetly, and change the subject. Rinse and repeat.
Posted 6/19/2013 2:42 PM (GMT 0)
My dad has osteoarthritis in his neck, knees and thumb. He also has carpal tunnel syndrome. He does heavy gardening and handyman work both around home and as a job. He also has some similar symptoms to me, such as IBS, restless legs syndrome and trigger points.

He is mostly kind enough to sympathise that I'm in pain, but every now and then he will mention that he thinks he is in a lot more pain than I am but he does a lot more work that is a lot harder on his body. But he tries to say it in a way that encourages me to do my everyday activities - fortunately my father doesn't try to turn it into a who's-in-more-pain competition and he isn't mean to me about my condition.

My mother, on the other hand, continually tells me that she suffers a lot more than I do. She thinks she has chronic fatigue syndrome, but she's never been diagnosed with it; and the same doctor who diagnosed me with FMS/CFS thinks that my mum has depression but not CFS. It certainly seems to me that her depression is more debilitating and life-sapping to her than my fibromyalgia is to me. But it irritates me that she keeps saying that her suffering is worse than mine - particularly when the main type of suffering she claims is fatigue; well, try CHRONIC PAIN EVERYWHERE with that fatigue! By the way, I normally acknowledge what she says without arguing with her about it. There's really no point in doing so.
Posted 6/19/2013 3:22 PM (GMT 0)
Before I had chronic illnesses and chronic pain I'm not sure if I could truly understand what someone was going through.  Also, fibro has been givein a bad rap for decades.  Even the doctors have told some to see a psychiatrist because it's all in their head.  That's a common statement...along with "that's a garbage can illness".  So, the vast majority believe this and even some doctors.  It will take a while for this to turn around.  Also, some people don't want to hear it and others get frustrated because they don't know how to help you.  It's all of the above why I don't discuss it outside of the couple of people who do understand.  I've also eliminated some people from my life, too.  It's the ones that think they know more about fibro than I do, even though they haven't experienced one ache or pain.  I really don't need that type of stress in my life. 

 

Favoritesong, I'm so sorry you have had an abusive childhood.  It sounds like your Mom perhaps only thinks of herself.  Some people think everything should revolve around them and when it doesn't anger, jealousy, and blame are directed elsewhere....and you are the closest "target".  It has to be hard to take but I know I'd do everything possible to get out of living under the same roof.  You just will be hurt over and over again.  But do try to understand that the problem is with her and not you.  Usually I suggest printing out info on Fibro 101 to share with unbelievers but in your case I don't think it would make a difference.  My heart goes out to you.

 

Luvsminis, I actually don't think fibro had anything to do with the people not showing up for the graduation party.  I don't think they would have bothered to RSVP OR to ask directions.  If they didn't want to be there because of fibro, then they could easily have RSVP'd that they were unable to attend.  I think they did plan on being there but something came up.  I've had wrenches thrown into many plans throughout the years.  It would have been nice if they contacted you and given you an explanation but some people just don't have manners.  I'm sure that was hurtful, though, because you were looking forward to seeing them, but I think I would give them the benefit of the doubt this time.  If it were to continue, THEN I'd start to wonder and also start examining my relationship with them.

 

Liz, in your case, as irritating as it gets....just lie down anyway and ignore her.  She is ignorant of what you are going through.  You could tell her that everyone perceives pain differently and since fibro affects nerves, your perception of pain is generally far greater than the normal person.  It might help, but actually I don't think so.  But, it's worth a shot. 

Jasmine, it sounds like your Dad is trying to help you.  He finds that keeping busy helps him and, quite frankly, it usually helps us too....unless we are in a flare.  He does sound very special. 

Is your Mom getting help with depression?  Has the doctor told her what he thinks?  I hope so since he is not supposed to be discussing any of his patients with other patients....even if they are family members.  But, you might look up some info on depression and, if it fits, sit down and try to talk to her about the possiblilty and let her know you are doing this because you want her to feel better.  I had to do that with my husband.  Back then they had to see a psychiatrist to get antidepressants and I didn't want him to think he was "crazy".  I told him he could have a chemical imbalance...just like I have an imbalance with my diabetes...and the medication could help him feel better.  He listened, got on the proper medication after a couple of trials, and he changed so much!  He used to come home, go in the bedroom and close the draperies, and lay in bed.  After the medication he became the social director of the neighborhood!  So, this might be something you and possibly your Dad might suggest to her. 

Sherrine 

 

 

Posted 6/19/2013 3:36 PM (GMT 0)
Sherrine, my dad is a very nice man - everyone in our town likes him. Several years ago, the doctor told my mum about the depression - and then my mum told me what the doctor had said, but that she didn't believe it.  shakehead So, no, her doctor hasn't discussed my mother with me. My sister managed to convince my mum (over a period of a few years) that it was a chemical imbalance. So now my mum takes a very low dose that does make a small difference - however, she needs a lot more than she currently takes. But she is actually trying to cut down on the amount, because she just doesn't like the idea of antidepressants. One of her friends had a daughter with depression who was given antidepressants, which caused horrible side effects - this has turned my mum off of antidepressants.  shocked She doesn't cooperate with counsellors or psychologists - she just argues with them. And she believes only in natural remedies, so she does take St. John's Wort.
Posted 6/19/2013 3:45 PM (GMT 0)
Jasmine, I explained it this way to my husband.  I'm diabetic.  I don't metabolize insulin in my body like most people so I need medication to help balance the chemicals so my body works the way it should.  Over the years I've had to increase my medication because things changed in my body.  You might try something like that. 

 

Some people equate antidepressants with mental illness, too, and that's not true!  I talked to him about that, too.  I let him know that I knew he was as sane as I am but had a chemical imbalance that he needed medication for.  Ask her if she is happier since she started cutting back on the medication.  If she is honest with you, she will say No.

 

Sherrine

Posted 6/19/2013 3:52 PM (GMT 0)
Thanks Sherrine. I actually did ask her that the last time I saw her - and she said she felt a lot worse since cutting down on the dosage. I will try to explain that it's a physical/chemical problem, not mental.

I'm starting on antidepressants myself, to help with the neurological symptoms of fibromyalgia, in particular the pain, and the low-grade depression I have as a result of living with chronic pain. I'm hoping it works! It's only been a few days so far.
Posted 6/23/2013 12:53 AM (GMT 0)
I hope it works, Jasmine. It sure did for me! Helped with sleep and pain - to an extent, of course. My doc said the same thing, by the way - that he didn't think I was clinically depressed, but that it was likely there was a bit of depression there because of the pain.

Debbie
Posted 6/23/2013 10:09 AM (GMT 0)
I think the antidepressant is helping me to sleep better and be in slightly less pain! I'm so excited, I wasn't really expecting it to help! :) No apparent side effects, either
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