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New to Fibromyalgia but not new to the pain+
I was diagnosed with Fibro 5 years ago following a severe auto accident in which I received numerous spinal injuries, many pinched nerves and stenosis. My doc diagnosed me with Fibro and I fought it. I thought the diagnosis was giving the person responsible for the accident a way out, but I was wrong. I was unaware that Fibro can be brought into light from a "dormant" state and the trauma from the accident could have been responsible for the Fibro flaring. Anyway, 5 years later, it really doesn't matter to me anymore how I got it, I just need to learn to deal with it. I did receive permanent disability following my accident so I no longer work outside the home. I have all the symptoms everyone else talks about in here, headaches, severe soft tissue pain, pain at the pressure points, RIB CAGE PAIN (here is the first place I've heard of others having this!!), achy body, stiffness, tremors, vision changes, sweats, pain with inhaling, tingling in my limbs, nerve pain in feet, sleep problems, comprehension and cognitive problems, exhaustion all the time. I wake as tired as I was when I went to sleep the night before. I've tried telling people around me about the rib cage pain and they look at me like I'm speaking another language. I'm so glad to hear that someone else can relate to that kind of pain also. I am having a terrible time with some members of my family believing me. It's so frustrating. For the most part I am in my nightgown every day. I don't go out of the house because of the fatigue. I have 3 older kids and an older mother I am helping out in many ways. I have other family members who are sitting back and letting me be our mother's caregiver and I'm resenting that also. They are healthy. But I am the only girl so I am the one who takes her to doctor appointments, grocery shopping, etc. She is an addict and could really care less what I'm going through. She thinks of herself only. She was on a binge recently for a few weeks so I packed her up and brought her to my house so I could monitor her meds and get her back to the real world again. She's a lot of hard work! Especially because I also am a single mom of 3 and I take care of my kids too. When I tell my mother about how bad I am feeling and what hurts on me, her typical response is, "oh really? Bummer!" or better yet, the other day I was in tears as I was doing the dishes and I told her my back was just killing me and she said, "well, if your back really hurts as bad as you say it does....." HUH???? Are you kidding me? Most of the time my back hurts worse than I say, as I am not a complainer. I don't bother telling others how bad I hurt because I begin to sound like a broken record to myself so I try not to bother others with it. But she should know I'm not feeling good because I rarely get dressed and cannot find the energy most of the time to even take a shower and shampoo my hair. I used to be such a hard worker. I always worked 45 to 65 hours a week and took care of everything related to my entire family myself. Every extended member calls me for advice whenever anything goes wrong - medical, legal, financial, etc. I've felt like some of those around me have felt like I'm lazy now, and just don't care about myself or my home anymore. My mother acts like I'm making a mountain out of a mole hill. I would get her reading material and try to educate her, but to be honest, she doesn't care enough to read it. I just want everyone to leave me alone and let me be sick. Does that make sense? How do I get others around me to understand what I'm going through each day? Also, how do I go about getting some help around the house? There are certain things that have been going undone around the house because I never feel good enough to do them, like vacuming and cleaning the bathtub, scrubbing the floor. Are there community organizations that do that without pay? Or does Medicare pay for help like that? Thanks for listening.
I am so sorry for your pain. I too have fibromaylgia. I was diagnosed in my early 30's. It's been an uphill battle and it is a life long process.
I too have family members who have taken so much from me both emotionally and physically. The #1 thing I can tell you is not one of them is going to help you. You have to begin by learning to care for yourself. There is a book, "Co-dependent No More." By Melanie Beatty-Smith. She was an alcoholic but then she too became the one in her family and friends that everyone used as their door mat. She was miserable. Her life was not her own. She didn't feel like going on. We give so much of ourselves as women, we have to for our children and as daughters and sisters and wives.
But you have a chronic illness on top of it.
The way you are living is partially due to fibromaylgia but a lot of it is due to Co-dependency. I know because I did it for over 20 years. My life was so consumed with my addict sister. She has been an addicts since I was a little girl. She is 8 years older than me, she is 56 and still abusing and now it's my fathers money. My brother is 62, he too is an addict with money, woman, prescription pills. What people like that do in our lives is create chaos and such craziness it cause so much pain and constant state of craziness we learn how to function in their world.
And again on top of that you are in pain.
I was injured in a car accident, I ended up with 5 surgeries on my spine in 2 years. It was one FM flare up after the other for over 2 years. I really thought I would not make it through. My mother died during all of it. I honestly did not believe I would live through it. Then I looked at my kids and realized this was the only life I had and the life they were living and they deserved their mother in it. A mother that has pain and some times sadness but a mother that could so some things to get up, put my clothes on, shower and fix my hair even if it's every few days. Then little by little I got stronger. I started taking supplements that helped me feel stronger, I started eating a little better and my health improved.
I then joined the local gym. I would walk in the pool 5 minutes at a time. It worked up to 40 minutes at a time. I lost 25 pounds.
My pain is still there every day, some days I don't go out. Some days I stay in my pajamas. There are the days I can't move. But I couldn't keep living that way.
Detaching from the very ill people in my life helped me as much as supplements, food, water, exercise. Their mental illness was killing me because I was allowing them to be so much a part of my life. I thought I could help them or fix them. Your mother is un-well. She either doesn't care about your pain or just doesn't understand. It's hard to explain FM pain to people who have never experienced it. Even doctors sometimes doen't understand it. You have to make decisions to not allow your mothers illness to be part of your life. She is chosing to be an addcit. You can chose to detach from her and her illness. If she is on a binge as hard as this sounds you can't take that on. How could you with your health.
Please try to get the book I mentioned. It's life changing and is a process.
I've not found help, for free any way. It's so hard cleaning, my daughter helps and I do what I can. So one day I do one bathroom. I do the next bathroom the next day. You can only do so much and ask your kids to help. But try to be an example to them, let them see you trying and I am sure they will too.
The very best to you.
I too have family members who have taken so much from me both emotionally and physically. The #1 thing I can tell you is not one of them is going to help you. You have to begin by learning to care for yourself. There is a book, "Co-dependent No More." By Melanie Beatty-Smith. She was an alcoholic but then she too became the one in her family and friends that everyone used as their door mat. She was miserable. Her life was not her own. She didn't feel like going on. We give so much of ourselves as women, we have to for our children and as daughters and sisters and wives.
But you have a chronic illness on top of it.
The way you are living is partially due to fibromaylgia but a lot of it is due to Co-dependency. I know because I did it for over 20 years. My life was so consumed with my addict sister. She has been an addicts since I was a little girl. She is 8 years older than me, she is 56 and still abusing and now it's my fathers money. My brother is 62, he too is an addict with money, woman, prescription pills. What people like that do in our lives is create chaos and such craziness it cause so much pain and constant state of craziness we learn how to function in their world.
And again on top of that you are in pain.
I was injured in a car accident, I ended up with 5 surgeries on my spine in 2 years. It was one FM flare up after the other for over 2 years. I really thought I would not make it through. My mother died during all of it. I honestly did not believe I would live through it. Then I looked at my kids and realized this was the only life I had and the life they were living and they deserved their mother in it. A mother that has pain and some times sadness but a mother that could so some things to get up, put my clothes on, shower and fix my hair even if it's every few days. Then little by little I got stronger. I started taking supplements that helped me feel stronger, I started eating a little better and my health improved.
I then joined the local gym. I would walk in the pool 5 minutes at a time. It worked up to 40 minutes at a time. I lost 25 pounds.
My pain is still there every day, some days I don't go out. Some days I stay in my pajamas. There are the days I can't move. But I couldn't keep living that way.
Detaching from the very ill people in my life helped me as much as supplements, food, water, exercise. Their mental illness was killing me because I was allowing them to be so much a part of my life. I thought I could help them or fix them. Your mother is un-well. She either doesn't care about your pain or just doesn't understand. It's hard to explain FM pain to people who have never experienced it. Even doctors sometimes doen't understand it. You have to make decisions to not allow your mothers illness to be part of your life. She is chosing to be an addcit. You can chose to detach from her and her illness. If she is on a binge as hard as this sounds you can't take that on. How could you with your health.
Please try to get the book I mentioned. It's life changing and is a process.
I've not found help, for free any way. It's so hard cleaning, my daughter helps and I do what I can. So one day I do one bathroom. I do the next bathroom the next day. You can only do so much and ask your kids to help. But try to be an example to them, let them see you trying and I am sure they will too.
The very best to you.
I'm sorry you are going through such a rough time. I can relate to everything you've said. I was diagnosed with fibro about 10 years ago and it has definitely been a very tough road ever since. And it certainly does not help when family members and friends don't listen to you when you tell them how you are hurting. Unfortunately, there are also many doctors out there that still don't "believe" that fibro exists and they do the same thing to you - looking and acting like "it's all in your head". I've done a lot of reading about fibro since my dx and one of the things that I've read that I thought was quite interesting was "many many years ago, diabetes was an illness that was thought to be "all in the head" - until they discovered how the pancreas works (or doesn't work) in this disease". So, just because there are currently no specific tests (other than the rule-out method and trigger point tests) that test specifically for fibro - it definitely does not mean it isn't real. Believe me - IT IS REAL!! If someone who does not "believe" or understand our pain could walk in our shoes for simply ONE HOUR - they would realize the type of pain that we endure 24/7.
It may not be an option for you since you already said your mother and other family members probably wouldn't even read something about fibro, but I found a very interesting book that helped my parents understand at least a little of what I go through. It is called "Fibromyalgia for Dummies". Another thing that helped them understand my pain is my mom actually agreed to go to a doctor's appointment with me and got to talk to the doctor first hand, so she realized and understood that I was not "making up or magnifying" my pain levels. If you could possibly get one of your family members to do one of those things (even if it's not your mother, maybe if someone else went and then repeated what the doctor says to your mom) it may help.
I'm sure you already know, but stress does definitely increase pain levels (at least for me). I know there's no way we can completely eliminate all of our daily stress, but if there's any way you can find at least an hour for yourself to just go in a quiet room and decompress a little, you may find a tiny bit of relief.
As far as finding some help around the house and with your mom, I would suggest contacting the local Social Services department where you live. They may be able to help you find someone. I'm not sure Medicare would pay for this type of help, since it is not technically "medical" assistance (i.e., nursing care) - but it would be worth asking social services and see if they know the answer to that. You may also be able to find someone from the local high school or community college that would be willing to come and help you around the house for a relatively small fee. A lot of times these schools will have a list they keep of those looking for "odd jobs" - even doing your grocery shopping or errands.
Another avenue would be to contact your local "area agency on aging" - or senior citizen assistance group. Quite often they will provide these types of services to senior citizens, but if you tell them about your medical problems and what you need, they may be able to help even if you are not a senior citizen. I actually did this after my shoulder replacement surgery - I'm 46 (was 45 when I had the surgery) and I live alone. I was not able to do housework or even prepare meals for myself, but yet, my medical needs were not enough to warrant an in-home nurse (they normally don't do the "domestic" type chores anyway). I contacted the local area agency on aging and they were not only able to give me contact information for Meals on Wheels (which was great because I could just heat the meal up and didn't have to worry about chopping, mixing, lifting out of the oven, etc. - and it was CHEAP and tasty) - but they also were able to provide someone to come in and help with light housekeeping (they're not going to scrub walls or windows or anything like that, but will dust and vac and clean bathrooms and kitchens). This also, although not free, was very inexpensive and the combination of these services were a lifesaver for me.
I hope some of this information is helpful and I also hope you feel better real soon! Remember, you are NOT alone.
It may not be an option for you since you already said your mother and other family members probably wouldn't even read something about fibro, but I found a very interesting book that helped my parents understand at least a little of what I go through. It is called "Fibromyalgia for Dummies". Another thing that helped them understand my pain is my mom actually agreed to go to a doctor's appointment with me and got to talk to the doctor first hand, so she realized and understood that I was not "making up or magnifying" my pain levels. If you could possibly get one of your family members to do one of those things (even if it's not your mother, maybe if someone else went and then repeated what the doctor says to your mom) it may help.
I'm sure you already know, but stress does definitely increase pain levels (at least for me). I know there's no way we can completely eliminate all of our daily stress, but if there's any way you can find at least an hour for yourself to just go in a quiet room and decompress a little, you may find a tiny bit of relief.
As far as finding some help around the house and with your mom, I would suggest contacting the local Social Services department where you live. They may be able to help you find someone. I'm not sure Medicare would pay for this type of help, since it is not technically "medical" assistance (i.e., nursing care) - but it would be worth asking social services and see if they know the answer to that. You may also be able to find someone from the local high school or community college that would be willing to come and help you around the house for a relatively small fee. A lot of times these schools will have a list they keep of those looking for "odd jobs" - even doing your grocery shopping or errands.
Another avenue would be to contact your local "area agency on aging" - or senior citizen assistance group. Quite often they will provide these types of services to senior citizens, but if you tell them about your medical problems and what you need, they may be able to help even if you are not a senior citizen. I actually did this after my shoulder replacement surgery - I'm 46 (was 45 when I had the surgery) and I live alone. I was not able to do housework or even prepare meals for myself, but yet, my medical needs were not enough to warrant an in-home nurse (they normally don't do the "domestic" type chores anyway). I contacted the local area agency on aging and they were not only able to give me contact information for Meals on Wheels (which was great because I could just heat the meal up and didn't have to worry about chopping, mixing, lifting out of the oven, etc. - and it was CHEAP and tasty) - but they also were able to provide someone to come in and help with light housekeeping (they're not going to scrub walls or windows or anything like that, but will dust and vac and clean bathrooms and kitchens). This also, although not free, was very inexpensive and the combination of these services were a lifesaver for me.
I hope some of this information is helpful and I also hope you feel better real soon! Remember, you are NOT alone.
SORRY I GOT OFF TRACK OF WHAT I WAS GOIN TO TELL YOU...
I HAVE TO STAY FAR AWAY FROM MY MOM... SHE THINKS/TELLS ME I'LL GET UP 1 DAY AND BE NORMAL??? WTF... PEOPLE ARE SO HARD TO DEAL WITH???
I FEEL LIKE THERE'S ALOT THATS UNKNOWN BOUT AUTO-IMMUNE STUFF...
AND EVEN HARDER TO GET OTHERS TO UNDERSTAND
I'VE HAD TO MANY SX TO MENTION BUT MY CRAZY DRS HERE HAVE FINALLY NARROWED IT DOWN TO FIBRO, MS, AND SOMEOTHER? AUTO-IMMUNE DISEASE THAT THEY CANT SEEM TO FIGURE OUT???
BEFORE THESE DX'S I WAS TOLD SO MANY DIFF CAUSES FOR MY PROBS...
SERUM-NEG RA
PALENDROMIC RHUEMATISM
POLYARTHRALGIA
JUST A FEW I CAN THINK OF NOW, BUT THERE WERE SO MANYDIFFERENT THINGS, MIXED IN WITH THE O WELL YOUR JUST CRAZY....
ITS ALL SO HARD... WISH I HAD ANY ADVICE ON HOW TO GET HELP WITH STUFF, I DEF KNOW HOW YOU FEEL THOUGH... GOOD LUCK
I HAVE TO STAY FAR AWAY FROM MY MOM... SHE THINKS/TELLS ME I'LL GET UP 1 DAY AND BE NORMAL??? WTF... PEOPLE ARE SO HARD TO DEAL WITH???
I FEEL LIKE THERE'S ALOT THATS UNKNOWN BOUT AUTO-IMMUNE STUFF...
AND EVEN HARDER TO GET OTHERS TO UNDERSTAND
I'VE HAD TO MANY SX TO MENTION BUT MY CRAZY DRS HERE HAVE FINALLY NARROWED IT DOWN TO FIBRO, MS, AND SOMEOTHER? AUTO-IMMUNE DISEASE THAT THEY CANT SEEM TO FIGURE OUT???
BEFORE THESE DX'S I WAS TOLD SO MANY DIFF CAUSES FOR MY PROBS...
SERUM-NEG RA
PALENDROMIC RHUEMATISM
POLYARTHRALGIA
JUST A FEW I CAN THINK OF NOW, BUT THERE WERE SO MANYDIFFERENT THINGS, MIXED IN WITH THE O WELL YOUR JUST CRAZY....
ITS ALL SO HARD... WISH I HAD ANY ADVICE ON HOW TO GET HELP WITH STUFF, I DEF KNOW HOW YOU FEEL THOUGH... GOOD LUCK
SORRY FOR THE CAPS (MY EYES R BAD) AND FOR EVER THING YOU GO THROUGH... I KNOW EXACTLY HOW YOU FEEL THOUGH IT SEEMS LIKE. MY AUTO ACCID WAS IN 2002 & IT WAS BAD 2, BUT REALLY I HAD SOME SX (OF MY UNKNOWN/MISDX'D) MS SINCE A FEW YEARS B4 THAT.
MY EYES MESS WITH ME SO I COULDNT READ THE WHOLE THING AT 1 TIME, JUST WANTED TO SAY HI & HOPE YOUR HAVING AN OK DAY...
LIVE, LAUGH, LOVE
MY EYES MESS WITH ME SO I COULDNT READ THE WHOLE THING AT 1 TIME, JUST WANTED TO SAY HI & HOPE YOUR HAVING AN OK DAY...
LIVE, LAUGH, LOVE
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