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A support group for people who have little or none in their lives
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crystalgreeneyes posted:
For many of us who unfortunately are living with fibromyalgia, we have a daily struggle. Some manage well, others not so well. Chronic pain and fatigue combined with insomnia can lead to depression and that is very common with fibro. as it is with any type of chronic illness. Everyone also reacts differently to drugs. Many improve while others keep searching for something that will work; that won't turn them into a zombie or make them feel sick all the time or maybe even worsen their pain. We do what we have to do to get by.
I don't complain to anyone or tell anyone about my condition but I do post here because it's the only means of support that I have. I am 57. I have a university degree and am very qualified in my profession. When I became physically unable to do my job 2 years ago, I went back to school for a year in a somewhat related field because I wanted to continue to work. Despite my daily pain and fatigue I have been looking for well over a year. I have even had professional help in searching for a job. I have done everything I can possibly can. I definitely could work in a position which involved my standing for long periods because most of my pain is in my back.
My daughter is 22 and I have implored her time and again to help me and yet she doesn't. I can't make either her or my husband understand because they just don't. I have stopped telling them anything about it. I have no family members nearby. When there is no one else to talk to, I write down what I feel because it is good therapy. It may sound like a lot of complaining but it is a method of release - asking others for advice and sharing experiences and ways of dealing with situations.
I can keep on trying. I can be positive but we all need someone to care. While our families may know that we have this condition they perhaps just remember the way we used to be and it may not occur to anyone to ask, "how are you holding up today?".
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xperky responded:
You know, Crystal, I need to ask that question of others more often. "How are you feeling today?" or "How is that headache you had last time we saw each other?" Those kind of questions are good to hear, either coming at us, or coming out of us.

My dear husband is so concerned about my health it seems out of balance. Sometimes I make a special effort to ask him about his well-being and be a good listener for a while. I think I bother him less since I can get on-line and share common experiences. These support groups are great.
With Compassion,
Margaret
 
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crystalgreeneyes replied to xperky's response:
Dear Margaret. You are very lucky that your husband is concerned. I cannot begin to explain how lonely and isolated I feel when he continues to ignore my pain and exhaustion. He doesn't believe in medication either so I hide the fact that I am taking a sleeping pill and an anti-anxiety pill at night. This does help because I do feel better when I sleep well.
Recently my husband was told by his Dr. that he has high BP and high cholesterol. For these two conditions, he is taking medication. But that is necessary of course. I was concerned and asked him all about his tests and appts. and what the readings were etc. and what I could do to help with diet changes etc. I have always been very helpful to others and I hate to see anyone suffer. When my daughter is sick, I bring her a hot water bottle, homemade soup and drinks. I check her temp. and care for her as if she were a little child. I do these things because I care and because I want to do them. All I wish for sometimes is a little of that kindness and caring in return. I don't ask... I just hope. We must always have hope. I know others here have talked about how many times they wanted to give up and I feel like that often as well. But when I think of how much it would hurt my daughter I put those thoughts away.
When there is a balance of concern between both parties, it works and it sounds as if you don't want to make everything about yourself and make sure your husband knows that you are there for him too.
 
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squarley replied to crystalgreeneyes's response:
BOY DOES THAT HIT HOME I HAVE NO SUPPORT ,I HAVE HAD THIS 20 YEARS AND NOW I AM 64 AND A LOT WORSE IN PAIN AND DEPRESSION AND ANXIETY EVERYDAY, MY HUSBAND JUST SAYS YOUR BE ALL RIGHT SURE WHEN IN ANOTHER 20 YEARS, MY DAUGHTER PASSED MY SON NO LONGER COMES AROUND THE GRAND CHILDREN BUSY WITH THERE LIVES AND I HAVE NO FRIENDS LEFT BECAUSE I CAN NOT GO OUT AND DO THE THINGS THEY DO, SO I AM HERE TO SO VERY MUCH ALONE, MY HUSBAND WORKS , FISHES ,GOLFS , HUNTS, SO I AM ALL WAYS ALONE, MY ONLY COMMUNICATION IS ON THE COMPUTER, SO I KNOW I AM NOT THE ONLY ONE, MAY WE FIND SOME PEACE, HUGS TO ALL , SHIRLEY
 
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rickie3grandsons responded:
hello I feel alot the same way you do No one else understands our pain and that is why I come on this site so please know we can wine to each other ...hahahahaI try to put in laughter in my day and you know as I do it is hard on alot of day . I am 54 and worked all my life raised 4 kids and married for 34 yrs..I was diaganoised 5yrs ago and it just seams to be getting worse Have been on so many differant med's well getting dinner ready so PLEASE KEEP IN TOUGH (from ont.Canada )
 
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booch007 responded:
Hey good morning,

Geez we have all walked this road. Including the leaving part* My sons were the worst when I complained and they made fun of me, so much that I hid in the shower to cry ( so no one would see) It is tough.

I am 58 and have had this a long time, early on I was consumed with talking about it , complaining and sharing my plight. But as the years have passed and I amongthis board a long time....my meds are better, I am more quiet. PLUS all know I have a problem......they don't always remember orunderstand* but they know I see the doctor alot. I see neurology every 2 weeks for trigger point injections.

Having my husband join me for a session in the beginning was liberating. He SAW the spots and how many and that the doctor so validated the pain and lack of function i was having. That the doc understaood me and answered each question in front of him....was amazing. Tears just for that.....he then became my champion to defend me to the boys. ALL got better after that. (plus they got older)

This is so hard with an invisible issue......no one understands. Just us. So I am so glad you found this site,. I came here as the neurologist said....find a support group thisis tough to do alone! Well I needed to know what was wrong with me to get a group to talk to. I still don't always fit here I am more CMP then FM....but I have pain and dysfunction of my body.

I have something to offer this group too....so I have gained more then anyone to be here.

Being validated and understaood is a BIG medicine for us. It lowers pain and gives you a warm blanket effect. Once validated I was able to push more and do more...not knowing what I had or afraid of what would happen if I pushed and hurt myself...was holding me back a bit.

BIG to get the right meds, you say you take none...wel of course you are frozen and can't stop focusing on the issue....please talk to your doc, tell him the home issues and the pain you are in. Hide the meds you need if you have to from your husband. THIS IS YOUR PATH...YOUR LIFE and no one has a right to tell you that you don't need something.

Make sure you are eating right and hydrating. Pace and rest during the day. I always try for a nap...I rested for 2 days after Christmas and did well with that. I have a heap of cleaning to do now though. Today I start.....

I wish you all the best and please talk to that dac, they can be so valuable in this mess.................Hgs, Nancy B


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