I guess I am wondering what you all do when you are feeling like a burden on everyone,I am having one really bad day for several days now I havent ' had any real sleep,the pain is driving me crazy.The people around me saying "it's the weather" may be right,but it seems if I hear it one more time I am going to explode,and I don't want to.If they don't want to know how I am doing ,I wish they would stop asking.I can be friends with someone who isn't ill but afetr so long it seems that it really isn;t possible as they seem almost afraid they will catch it.My niece wouldn't even let me hold my grandnephew because she thought somehow I would give it to him.I hope no one else goes through that.Then she' says but we don't really know do we? That is the one thing we do seem to know is that it is not airborne.
Hi Sarah2 and welcome. I guess that means that your niece believes it's real if she thinks her babykins can catch it, eh? No, we know it's not airborne but some people....argh.
Your frustration is understandable. We suffer so much and ask for so little. Just a bit of understanding and sympathy, which very few seem able to give. So that's why this group exists. To validate one another's experiences and let people know they are heard and understood. And believed.
I'm sorry that you're having such a rotten time with the fibro. Those days are pure h#ll. And yes, it's hard to be with non-sufferers sometimes because their frame of reference is so different than our own. What we go through and suffer is too much for most to understand.
This is a good place to check into and share our experiences. You will be believed, you won't be considered a burden. We know what you have isn't airborne. We get it.
Not being able to sleep definitely ramps up the pain. Please check out another thread on here about fatigue and how to handle it. I think there are some useful suggestions on there that might benefit you. Many of us suffer from sleep disturbances as well as pain during our sleep cycle.
I hope you have a good night's sleep tonight.
Take care,
Petunia
HI SARAH2 IM SORRY YOUR NIECE THINKS ITS AIRBORNE AND WONT LET YOU HOLD HER CHILD WERE ALL IN THIS TOGETHER WE KNOW WHAT ITSCH LIKE TO BE US AND WHAT WE GO THROUGH EACH DAY JOIN US ONLINE WHENEVER YOU NEED US SOME PEOPLE KNOW MATTER WHAT YOU YOU TELL THEM AFTER THEYVE ASKED ABOUT YOU CHOOSE NOT TO UNDERSTAND YOU CAN EXPLAIN TILL YOURE BLUE IN THE FACE AND THEY STILL DONT UNDERSTAND THEY DONT SEE ANYTHING WRONG THEY THINK THERES NOTHING WRONG AND YOU SHOULD. BE ABLE TO DO WHAT YOU DID BEFORE LIFE CHANGES AFTER YOUVE BEEN DIAGNOSED I JUST ENJOY WHAT I CAN LIVEPEACHYH DAY TO IT FULLEST HOPE THAT HELPS HAVE A GOOD DAY
Thank-you so much for your kind reply.Petunia
At least I don't feel that way every day thank-you
I get mad at myself to for not being able to do what I once did,I know what a bird must feel like to have it's wings cut, and I hate being poor,I can't even explain how much I hate being poor I was a Union Sheet metal worker I worked big booming jobs and made alot of money .I can remember walking around with paychecks in my pocket that added up to more than I live on in a year, Because I was to busy to go to the bank.If it would just leave my brain alone. I could do something.I have to go do something else I am too upset.Thank-you for listening.
Very well said, DianeW. This is exactly right on.
Sarah- I’ve been in your shoes and most of us have. Doctors, family, coworkers, friends just don’t understand how we can be in such pain but look fairly normal except for the bags under our eyes and the pain in our face. We are the best actors and actresses in the world! I now, with hours of help with my therapist have become a very good defensive actress. That’s what I say now that I’m not working and it gets a very different reaction. That’s not to say I don’t find myself crying in the car or when I read how others are suffering. I needed a coping mechanism to help me from bursting out crying when someone doesn’t understand. If they don’t get it - it’s their fault. I just had a neurologist tell me that I have Fibro because I’m depressed! I let him have it and said - "Buddy - I have Fibro, which causes me to get depressed because there are people, like you, who frustrate me because they don’t get it. You are taking the easy way out and telling me I’m depressed. You are wrong and you should continue your education on the subject. " when I asked him what all the markings were on my brain scan compared to previous years scans he said it was from the Fibro! I then said “gotcha!” If they are from Fibro, then the so called depression I have is not from then? " he said the depression wouldn’t cause them. Told me to see a psychiatrist, where I said I don’t need any more medication for anything but PAIN and I already see a therapist! He sure didn’t like to be called on the carpet, but I felt so good leaving that office knowing I gave him sonething to think about. But probably won’t.
Does it still bother me - of course. But I feel that if I dwell on it too much the guilt brings more pain and stress which doesn’t help.
If you were a union worker - can you receive your pension now or contact the union to see if there is some type of benefits to help you? You may want to check that out. Hang in there, sarah ~ you’ve got a lot to offer many. Hugs ~ Sandi
Ihadnt thought about the union. I have been through a simulr experience with a neurologistit does help to hear I am not alone Sandi.Thank you for replying
Sarah, you are definitely not alone here. I think every single one of us feels like a 'burden' in some way. It's a horrible feeling when we were so independent before this, with great jobs, money, friends.... and then it's all taken away.
No matter how much we try to educate people about FMS, they still won't listen, or believe. I've even seen 2 Rheumatologists in the past 6 months that don't believe in it! We just need to keep trying I guess, and hopefully one day people will understand. I've pulled away from all of my friends and most of my family because they think I'm lazy, or lying, or a hypochondriac, and I just can't handle being around that negativity anymore. So I've made myself a new family, from friends that I choose online that have become my support system, and I love them all dearly. They understand when I can't do something or keep up with them, unlike the people around me.
And no, it's not airborne, nor contagious according to the American College of Rheumatology and the NIH. If you click these links, it takes you to their fact sheets, in case you'd like to give your niece some information. We also have a section here of letters that people have written to their loved ones, explaining what we go through. Check them out too, there may be something that might help.
Hugs -
Renie♥
Sara2:
I am sorry for your frustrations. I am new as well. It is good to vent regarding this terrible disorder. Sounds like certain people in your life need a bit of Fibro education. People are so funny - they think when people who are suffering will give the same symptoms to them, crazy and un-thoughtful. How would they like it if the table was turned? I do not wish this on my worst enemy but sometimes I get so frustrated as well that I wish people could have Fibro for just one day to see what we go through and then maybe they will understand.
My thoughts are with you!
Yea ,I said that to a "pain specialist nurse" who was working with a former doctor of mine.So I had waited 6 weeks driven round trip over one-hundred miles to have a ninny like her tell me to take asprin,or ibuprophen.I had had it by then I had been telling my doctors for months that I was in pain and that I thought that I had cancer on top of every thing else . I immediatly retracted it saying as you have I wouldn't wish it on my worst enemy. But as it turned out I was then fired as their patient ,told I was crazy. I have a shrink he told me to see his brother,I did have cancer also. I guess what I am saying is maybe we should get angry more of
ten ,because if I had not I would have stayed in pain pyche meded out and died by now of cervical cancer. Get Mad ,sometimes it helps get you what you need.
Thank -you for your kind reply it has built up in me for so long I am so angry that they did this to me .I have a hard time talking about ti
Wow. It stuns me to think of such incompetent people practicing medicine. Someone who tells you to take ibuprofin for fibro pain - and perhaps cancer pain too - is a ninny and shouldn't be in the medical field! If I were you, I'd send them the proof that you had cancer, and tell them just what you told us, that if you'd continued seeing them, you'd be dead right now. Makes me see RED just thinking about it! So I'm so glad that it all turned out for the best for you, AND you got your cancer treated! That's a real blessing. So I guess it was good that the pain specialist nurse was THAT much of a ninny and made you THAT mad. GOOD for you for being proactive and getting another opinion!
SO GLAD to hear you're doing better now and thank you for sharing your story.
I remember getting angry a couple of times as well. I ended up switching doctors and what a difference that made. This doctor actually understands what I go through. Sometimes we have to be our own advocate to get what we need.
Hang in there!
I had to go to that hospital for an emergency,because When I had radiation my kidneys shut down,so I had nephrostomies for a year,a tube going through your back directly into the kidney..I tripped and it came most of the way out and blood everywhere and pain. knowing that the ambulance would take me there I took my own pain meds .He looked up my records ,because he still didn't believe me,asked if I needed more pain relief ,i didn't at that time as I had taken some before the ambulance got there.He never acknowledged that he was wrong and got angry when I couldn't find anyone to come to get me in the middle of the night and finally admitted me for lack of being able to get me 15 miles down the road when my pain meds wore off and I asked then if I could take some of my pain meds ,well I asked for my purse and started to get them out.They didn't want me taking any of my own So he prescibed me yet a higher dose than I was going to take. Never apologized nothing Then a few weeks later I received a letter from his lawyer saying I wouldn't get any more pain medication at that facility unless I had a note from my pain doctor that I was on it. I think I have been angrier with someone in my life but can't femeber you it would have been
Gentle hugs. It is strange what some people will think.