Am i the only one? irritable, lonely

General
21

Fibro certainly tests our mettle, doesn't it? How about the next time someone wants to come over, you say yes? What's the worst thing that can happen? I can tell you what will happen if you keep saying no - you will be alone just not by choice. Shutting people out of your life is not the answer to dealing with your Fibro. It is now, and likely part of your life for as long as you are here. You need to decide how much you are going to let FM affect who you are.

But I have good news for you. In the beginning, my FM was mostly searing pain. However, as time went on and I understood the most important thing about FM, the constant flares lessened and mostly pain soon became mostly fatigue. It is different for everybody. I've literally spoken to and met thousands of people with FM and so many people share the same story about FM becoming so much more manageble as time goes by.

You are probably wondering what is the most important thing to know about FM as I mentioned in the above paragraph. You see, for most people, Fibro comes on so suddenly and is so intense and life changing and is such an assault on our senses. Each activity you try from your pre-FM life brings new meaning to the word "pain", sleep is something you vaugely remember and fibrofog is, wait, what were we talking about? The diagnosis stinks because we don't know how you got it. There is no cure and there are so many different symptoms each affecting people with FM SYNDROME in different ways that our heads are spinning just trying to process what has happened. But here is the secret - it is not a progressive disease. So, chances are you have already experienced the worst FM has to offer...and you are still here. You got through it and you are ok.

So, you are probably like, THAT's IT??? After all that build up?? My response is absolutely. I've had FM since 1991 and it took me two years to realize that having already experienced the worst FM can throw at me, there is no more huge surprises out there. It's like readinga book. I just finished the latest book by the English author, Jeffery Archer (Best Kept Secret - rather fitting title). When I was reading it, everything was new. I can read it again, but there won't be any surprises if I do. The same holds true for FM - ONCE YOU EXPERIENCE EVERYTHING IT HAS TO THROW AT YOU, YOU'LL HAVE, WITHOUT KNOWING IT, ESTABLISHED THOSE PARAMETERS OF WHAT YOU CAN AND CANNOT DO AND HOW BAD THE PAIN WILL BE. At that point, you start to regain your life. It is that simple.

And let your friends be part of your life. If you keep saying no, they will soon stay away for good. That's another nugget I learned from experience.

Should you want, I've used a list of what people with FM should do to keep themselves healthy, happy and in life. Let me know if you want the list. Best of luck. Marc

22

No, you are not alone. I stay in the bed all the time with no make-up. I’m lucky if I wash my hair once a week. If someone comes to see me, it’s in my bedroom, and I make no apologies. I get dressed when I go to the dr, but I don’t always get dressed up. People have to take me as I am. I hurt to much to fit into societal norms.

23

yes, I'm the same way, when I am hurting, I want to curl up in a ball and have everyone one leave me alone. I do it when I can, but my husband is a pastor of a very busy church. So for me, I am always in the spotlight, and have to get out there anyway. And when I do, I usually feel better. You need to be around people some. Its not good to alienate yourself.

But at the same time, you cant do what you used to be able to do, and life goes on... it makes you feel kinda lonely and like people have forgotten you. Its just plain tough. Get out there even if you dont feel like it, but know your limits. After awhile they will understand and you can find a balance .

I hope that makes sense.

Melody

24

I suppose what I have learned is if I stay in bed, if I keep isolating myself I will get depressed. If I give into this illness it will take my life. I won’t die from it but it will take any life I have. Do I have pain everyday, yes, do I get up in spite of the pain, yes. I work, I work in spite of the pain and fatigue to the best of my ability. I cannot do more than that. I have had to have periods off work because of increased pain but I proactively work with the meds and a pat to get back even part time as soon as I can. I have not been told to cut back on what I do. I have been toltheist FM is a chronic pain illness not an end of life sentence. I am encouraged to get back up even when I think it will never happen and I do. I have been hospitalized in times when I have nothing left to give and taken care of for those times usually no longer than two weeks in hospital then comes the hard fight back from home. I don’t believe my FM is secondary to any other illness as I have had every conceivable test done when I was in hospital. I know for me I can’t afford the luxury of playing the ain’t it awful game because that quickly spirals me into suicidal depression and that’s actually worse for me. I do take morphine for the pain regularly in the long release form and also take short acting morphine for break through severe pain. That does not mean I’m pai

25

Rest of reply…

That does not mean I’m pain free I have a Pain level of about 5 on a 1-10 pain scale and this is constant so I only take the fast acting stuff when it goes higher thn this. Unfortunately FM has no answers or no rhyme nor reason why I have it and my neighbor doesn’t. I also have CFS so I come straight home from work to e to bed and I also use weekends to recharge. I pay someone to do my housework fro me to take that away from me. I wish you well withnyour battle for that’s what it is. Hugs, alindy

26

Apology for the errors…I think you will get the jist of what I was saying.

27

I can relate 100%, I thought it was only me!!!

28

completely understand. Constant, unrelenting pain, fatigue, and lack of sleep cause the irritability, that's a given. Since I've had FMS (now going on 12 years), I've discovered, my biggest peeve is people. Can't stand them. :)lol. I also realized not long ago, it's because I have no patience... and that stems from the fatigue and pain. When you feel lonely... just come here & read the posts. That's what I do. It always seem to help me feel like I'm truly not so alone. xxoo you are not alone, my friend.

29

I completely understand this. I've lost so many friends this past year. I try to be social but I always end up sitting at home with my dogs. The friends that I do have are incredible but it's very disappointing to watch people fade out when you are in so much pain.

30

hi Tessa xx completely understand ! you have lots of people here who are there for you and care xx


31

♥FM☆Ratteld♥ ,

Wow!! What a spectacular message you left above. Back in 1992, I founded and facilitated a support group for people with FM in the Maryland Suburbs of Washington DC. We met at NIH. Very quickly, I had a loyal group who showed up at every meeting. One of these wonderful women was named Phyllis Goldberg. She was instrumental in raising funds for the construction of the Holocaust Museum in Wash DC and had Fibro somethiing fierce. She is no longer with us, but she left behind people who still think about her everyday. I am one of those people.

In the mid-1990's, I was asked to be on a panel at USU (Uniformed Services University) and asked Phyllis to join me to give a different perspective. When it was her turn to speak, she read what turned out to be one of the most powerful speeches I've ever heard. Her focus was on denial.

The reason I bring this up, ♥FM☆Ratteld♥, is that reading your words above felt as those I were listening to Phyllis. It brought a tear to m eye and had me reaching for "The Best of Fibromyalgia Frontiers, 1992-2000" where her speech was put on paper. If you are interested in reading the speech, you have two options - send me a private message with your phone number and I'll call you and read it to you OR you can visit www.fmpartnership.com and see if they still sell that publication or better yet, if that article is posted on their web site. However you do it, it is so worth the time and effort.

Marc