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Fibromyalgia Community
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Avatar universal

Help with family members' perceptions

Hi, my name is Bridget, I'm 34 and was diagnosed with Fibromyalgia in 2008. It was caused from prolonged pain due to Medullary Sponge Kidney. Since 2007 (when I was diagnosed with MSK) I've been on the fentanyl patch and vicodin (for break through pain). I've tried diet, exercise, vitamins, chanting - you name it - all so I could get off pain meds but nothing works and I can't help but think that maybe I just need to be on pain meds. I even cut my fentanyl dose in half (well I asked my doctor to decrease the dose) but that caused me to tailspin into horrible agonizing pain - I ended up needing vicodin every day (I had managed to stop using vicodin almost all together) and because I was so sick I lost my job. Now, still on the decreased dose, I can't work (not like I was doing a great job before I decreased it - despite my MBA and experience I'd been forced to take jobs with decreasing hours and responsibilities). I filed for disability in November and I'm still living off unemployment for the time being but soon there will be a gap and that's a big mystery as to what I'll do. My mom HAD been supportive of me filing for disability until she realized I might need her financial help and now she calls me up screaming at me that I'm a drug addict and this is all my fault and I was put in this position due to my own bad choices. My father just helped me out financially so I can keep going a bit longer (he's not horrible) but if I move in with him or my mother I have to give up my two dogs (the only reason I'm still alive right now are those dogs) and I would have to get a job as soon as possible (he doesn't understand my condition at all - even though he teaches health care admin!). I'm also losing my leased car in March and won't be able to afford a new one - even a cheap one. My mother had said she'd help me but is now saying she won't help me unless I get my **** together and join a bible group and lose weight and listen to her yelling at me about what a pathetic waste I am. Yeah - no thanks. I care a lot less about her financial support than I do the loss of emotional support she had been providing up until now. Add to that my sister who believes that if I just got off my pain meds I'd feel so much better and my two chronic pain conditions would just magically go away. I don't know what hurts more - the fact that I don't have their support or the fact that they think I'm this huge pathetic disappointment.

Is there any way to explain to them my condition, or my pain med use, in a way that they might magically understand and be supportive? I don't want to live with any family member - I'd rather live on the streets (though I'll fight to prevent that if I can). I can't work - my brain is mush from the neuralgia meds (Gabapentin) and 4 yrs of chronic pain - and my body is just a mess pain wise. Am I really just pathetic and lazy like they think I am? Sorry - I guess I just need someone's opinion who actually has the same condition and understands.

thanks,
Bridget
7 Responses
553995 tn?1332018840
The people who can hurt us the most are those close to us. Welcome to Medhelp where you will find you are not lone in your valid struggles.
It is disappointing to find that those closest to us turn self centered when they feel helpless with someone they care about. They use many too so self preserve their hearts. Yes, it abandons us but that is where we learn more about ourselves than ever imagined.
I too had a clueless family. After years of guilt trips for my not visiting, missing holidays, not behaving as I "should" I took action to be true to myself.
Pretty much I lived by, I hurt, you won't/ can't get that, get lost.  A funny thing happened on my way to being true to myself, people began believing as I sat in my own life as I am.
When people accused, my response was " sorry you feel that way" no more explanation. I was truly sorry they felt the way they spoke.
One tool that worked well, I brought my Mom to several doctors with me, asking the doctor to explain the degree of pain I'm in. Explaining the function of the pain meds.  My husband who pulled away out of complete inability to feel useful, I brought to the doctor, then I pronounced, " get it or leave" hoping he'd get it.  He got it and things are very good but it took work.

As for all your other problems, there is disability, working at home, etc.
One day or moment at a time.
1530171 tn?1448129593
Hey Bridget,
Welcome to the forum and
Happy New Year to both of you.
I related to both of your stories, as growing up as child with severe anxiety,fears and excruciating pains.
Understanding and support were non-existent, as times were tough,
with poverty, political unrest and great uncertainty, so  survival
was the order of the day. Mom's Depression and heart condition with
a baby and an toddler at home, both suffering from chronic bronchitis and asthma.
I did not leave any room for my issues. I kept everything to myself.
My father was taken away by the military and I had to be strong and do whatever it took-at the age of 10- for all of us to endure this situation.
I spent countless hours crying secretely.
I'll continue my post at another time as I gtg!
Niko
Avatar universal
Thank you both :) It's nice to hear and you're right - I need to use this as an opportunity to come into my own. I don't need to have them understand for me to be ok - it still hurts that they don't but I guess I have to accept there are some things I just can't change. Like just now, my sister called to check in and see if I was getting out of bed at all. Really? I've been sick and on these meds for four years - the first two were spent working 60 - 80 hr wks - and she thinks I'm just this bon bon eating lazy lug. And you must understand, from having this condition I completely understand folks who are immobilized by it - it can be really disabling I know. My point is just that my sister and the rest of my family thinks I'm lying on the couch all day shooting up drugs or something. And if I get upset by this it must be the drugs talking - I swear if the TV show "Intervention" shows up at my apt I would not be surprised!
Unfortunately none of them are close enough that I could take them with me to the doctor - maybe my dad - but it's still an interesting idea. Maybe I could ask my doctor if there's any information I can give them to read. My mom sees these infomercials for some smoothie or vitamin that "cures fibromyalgia" and I guess she thinks if it's that easy it must not be a very severe condition. (side note - I've tried the smoothies and the vitamins - not gonna knock them cuz there is something to be said for natural solutions - vitamins def have helped - but "cure"? I think not, at least not for me) But for my mom - an infomercial actor is someone to trust over your daughter. I need to get them some real information - I've tried before but obviously that didn't work so I'll ask my doc what he thinks. Also if you guys know any good links please let me know :)
But I have to say it really helps to just hear that it's not just me - so thank you very much - I really appreciate your responses and for sharing your stories with me. And I hope that some of my experiences can help some of the other folks on the forum. I'll definitely be posting more.
I wish you both the best!
-Bridget
553995 tn?1332018840
Even with my family giving me their consent to be ill, they show they have not ever felt like I do.
My brother invites my husband and I to dinner, after coming for a sick visit with his wife and hearing my tales of woe.
I told my Mom, out of frustration, that he actually asked me out, in the evening! Something I do not have the energy for, and she asked if I am going out with them!!
Seriously!??!
This from a woman who not only knows the gory details but visited me every Tuesday for six weeks to lift my spirits.
It is hard to drop the clueless response but I have to remember she visited me which helped.
HAPPY NEW YEAR  lol
Avatar universal
OMG - that's just nuts. It just shows that people who've not experienced chronic pain just don't have a way to truly understand. With as cold as it is I can't imagine leaving the house at night - well I should add I don't usually like going out at night when it's warm unless it's something really special. It's nice that they visit though - my dad visits on holidays so that's nice. My sister and mom haven't visited me in 12 years - if I want to see them I have to go to them. So you can see how wonderfully supportive they are. Of course they don't understand - they don't even know how I live! At least my dad has a clue - of course he's the least sensitive person in the family (like - you broke your leg? get over it already!). I guess it's a good thing I have supportive friends and my puppies - they are the best :) No one is more supportive than a dog in my opinion - they really know when you're sick and come cuddle whenever they see you are sick. And my best friend lives next door - so I'm pretty lucky. Gotta count your blessings I suppose :)
553995 tn?1332018840
Twelve years. I'm so sorry you have been detached from them like that.
Your Dad sounds like a decent guy. My Dad comes across like him.
Be strong and resist the urge to be weak to prove to them how sick you are.
Have you tried Ultram a pain receptor blocker, cymbalta an antidepressant  which helps with pain, Neurontin, or baclofen which helps with neuromuscular pain?  These are not considered narcotic.
Lastly, I tell no one I'm on pain meds daily. My husband knows, that's it. People know I have them as an option but I minimize my use of  them. My doctor monitors my use, as do I. If I hope to have a life, I need to lighten the burden of my body.
1530171 tn?1448129593
Continued from previous post.
It took a major episode of very sharp chest pains, breathlessness and total fear in front of my mom, for her to take note. She suspected I was having a major heart attack,however, it subsided gradually, but nevertheless left her concerned enough to give me some money to go visit a doctor and get checked.
So next thing you know I am at some neuro-cardio-psyche doctor after being recommended by a neighbor. Alone in the waiting room,scared and anticipating the worse outcome. Dr.A opened his door , looked around and asked where were my parents. I remember his expression till this day as I explained that I was alone and was there to find out if I had a heart attack and if I would live or not. He smiled and said : You'll be fine!
He knew instantly everything that was going on in my life.
"You are too young to take medications for what you have" so he gave me some printed sheets on breathing techniques and other holistic advice and exercises. I followed everything to the T , things got a bit better, but the trauma was very deep inside me.
The consequences were lasting, as on and off I was going through some
bouts of miserable debilitating sickness-dealing with this entirely on my own. From doctors to relatives I got similar responses like: Toughen up,
don't be a cry baby, it's in your head, there's nothing wrong with you!
I never had a dx, never took meds, and endured all the suffering in solitude.
It is my nature to persevere and seek answers, to defy the odds and to
claim my God given right to find my true purpose in life.
It all came together, but not before one but two near death experiences!
-and a whole many other challenges in between-
My connection to the Spirit world and my Spirituality had by then moved up a few notches and fear, anxiety and stress where being gradually replaced
by the knowledge that everything was going to be O.K.
As I was totally taken by the deeper perspectives of eastern philosophies
and eastern healing arts, there was a transformation taking place within me! I was no longer the same person. My physical body was free of pain,
my mind was thirsty for wisdom and truth and my spirit was leading me to
higher awareness and consciousness. The emotional connection to my childhood trauma was gone with all of its ill effects it had on me.
Forgiveness and understanding were filling all those voids and dark places inside me with light.
After college I went on to study holistic health and in more recent years
Reiki, Energy Medicine, Energy Psychotherapy and Hypnotherapy.
I regret nothing that happened in the past, my health presently is as good as it can be , and most importantly I'm fulfilling my true purpose in life.

Hang in there, make your Spirit the true driver of your life.
Be forgiving and understanding, as  being unforgiving  and NOT understanding takes too much space inside us for better things to come in.
We all have a higher purpose, and yes I understand how hard it is at times
to even think about making breakfast or taking a shower.
But do not loose sight of your Divine connection. Sometimes within all the suffering there are valuable lessons to be learnt. So connect to your Source,learn lessons from anything negative and find your purpose!
You are never alone. Come visit anytime. Ask questions, make comments
send notes or pm me directly anytime. Do not feel you're intruding.
I'm very appreciative of all the knowledge that I have gained in the healing arts and I'm very open to share it with anyone that needs it.
There are many holistic approaches that do work for Fibro.
There are many different levels of energy and I respect and work with all of them, from the most basic Physical/Molecular to the highest Consciousness/Spiritual
Stay strong, as you are not what your symptoms are, be true to yourself
as you are much more than any medical label given to you and get Inspired
as being inspired, keeps you connected to your Spirit.
Hay House Radio has some very Inspirational and Personal growth programming and it's totally free. For a nominal fee you can become a Hay House Wisdom Community member, which allows you  access 24/7 to
all their programming. I am a member and it has been absolutely an incredible experience for me. Do a search and check it out!
Big Hugs to both!
And Stay in touch.
Blessings
Niko
PS
By the way it was -27 Celsius or -17 Fahrenheit(with the windchill factor)
yesterday up here. That was cold!



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