Need to get something off my chest

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mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 9/4/2009 6:25 PM (GMT -7)   
I don't know if this is appropriate, if it has been beaten to death already. Sherrine, if you think this should be deleted, I don't have a problem with that. Please bear with me, I'm not the best of speakers (in a written forum?). I have a hard time getting my thoughts across, even when my heart wants to offer help or solace.

When my doctor first mentioned fibro to me last year, I was not doing very well. I cried many nights from the pain and the unfairness of it all. I didn't understand what was happening to me, every day a new symptom. Then I found this forum. I asked questions, got helpful advice and answers. I spilled my guts and whined, I got virtual hugs, commiseration and a promise that things would get better. I really don't know how I would have coped without all the help and support here.

Then I left for awhile. I felt that I was dwelling too much on my illness. That I was making myself more sick by dwelling on my symptoms and analyzing each little feeling. I came back now and then to read, especially when I was having a harder time. Knowing that others felt the way I did, and all the little tips that others have learned over time really do help. I was about to start posting again when I read a few posts that really upset me, and I stopped even coming by to read for some time. It was a couple threads that were started about the same subject as what has been going on the last few days. Optimist vs/ pessimist, great attitude vs/ barely getting by. And you know what? I thought back then that the optimists were a bunch of self righteous ***es. How could they say that you chose how you feel? How could they say that 'my' negativity was making my pain worse? I wasn't negative! I was trying to deal and not getting very far. How was that my fault? I got sick of reading the same bunch of drivel and left again.

Then it happened. I got a few good days in a row where I felt normal. I accomplished things, I played with my kids, made love to my husband, I laughed! And then it hit me like a ton of bricks. I was NOT going to let this illness take over my life. I was NOT going to let it dictate what I could or could not do. I was NOT going to let fibro rule me anymore! So it was revealed to me. I COULD choose how I was going to feel. The mind is a very powerful thing. If you let yourself believe that you are sick, you will feel worse. If you let yourself believe that anything is possible, you can accomplish great things.

I'm not saying that I am cured by any means. I still have days that I feel like I can hardly move, but I force myself to. Most days I feel much better afterward. A few days, I have no strength to go very far. And that is ok, I do what I can on those days. And then there are nights like last night where I can't go back to sleep for the pain. But it doesn't mean that fibro has won. Just that I am a little more tired than usual, and I have my permission to give my body time to rest and heal. Maybe it's because I don't think I have fibro that badly, I do believe my case is mild. But I do remember one of those first few weeks where I thought my pain was too much to bear. I was huddled in bed, crying for myself. MS runs in my family, and my PCP did do neuro tests to rule it out. I thought then that fibro maybe did not damage your body, but in some ways, it was a worse fate than MS. So looking back, I did have pain. How did I overcome it like this? Positive thinking. It didn't happen overnight, but as long as you believe, TRULY believe, then I do firmly feel that my mind has helped me get over the most difficult of hurdles so far.

And I am not an optimist by nature. I have always looked at the worst case scenario, gotten down by setbacks, fought to keep my sanity sometimes. I work with a couple girls who are always happy. Unlike me, they always keep their cool, don't get ruffled, don't dwell. I have told one of them before, "It must be so great being you, I've never seen you upset." Some people are more adaptable. Some need to get it beaten into their heads. Some take longer to go through the grieving process of losing their health. Heck (not the word I wanted, but it will do) I am feeling myself slipping back with this facial pain. "Why me?" Even though I learned so much this past year, I seem to be losing it. Pain is a very scary thing. But the thing we have to remember is that life is still good, if we let it be.

I'm not too sure what my point is with this. Maybe it's b/c I feel bad for Donnai, I feel like I was in her shoes not so long ago. I think the amount of pain you have does in some ways dictate how long it takes you to dig yourself out of your... despair?... I don't know. I also want to make it clear to anyone who does feel that the optimists are belittling them, that is not true. We (yes, I am part of that group now) want to help. It takes time, but there is hope.

I want to offer my warmest wishes to pain free days ahead, days with sunshine and a feeling of peace with your own body.
I am sorry if I offended anyone, but I felt like it was something I needed to get off my chest. (((HUGS)))

possible fibro and trigeminal neuralgia
50 mgs amitriptyline


Jhemi
Regular Member


Date Joined Jul 2009
Total Posts : 223
   Posted 9/4/2009 6:48 PM (GMT -7)   
Mamanan..I understand perfectly how you feel. When I was first diagnosed with this I was also going through a phase of doctor's trying to find out what was wrong with me other than this. I saw doctor after doctor...didn't have one vial of blood taken...always at least five. I felt like a pin cushion. This was about four months ago.

When I saw others saying how they exercised and had good days I was flabbergasted. I thought what? Well goodie for you but it sure isn't happening for me. What I didn't realise is that like a child I was just going through a new phase..which hasn't happened to me in a very long time lol.

I was always healthy...tired alot of the time but overall I could move about pain free. Never had colds or the flu. I thought I was in pretty good shape. wrong..

When this hit about almost two years ago I had no idea what it was. Just knew it was painful and no one seemed to believe me. Went through doctor after doctor. They found everything but what I was going there for in the first place. Finally I'd had enough and told my current doctor whom I have a great respect for that even he was not addressing the issue I had seen him for in the first place and finally I must have described my symptoms right to him because he looked at me rather shocked and told me I had fibro.

What I didn't know about the disease but have come to realise here because of all the responses I've read and answers to my own posts is that there are many things that cause these flares...one of them being stress. During the last three months at least, with all the surgery and financial worries that I have from seeing so many specialists I had been putting myself through great stress. My body with the pin pricking and mind boggling diagnosing and losing parts that I thought I needed but found I didnt?? It's no wonder I could never think of myself getting better!

Then I realised sleep makes a difference too...talked to my doctor...got on the right meds for me and voila...I too can now say my flares are not nearly as bad as they were at one time. Four months ago you could never have convinced me that would be true.

Gotta crawl before you can walk...

Hugs hon

Jhemi

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/4/2009 7:05 PM (GMT -7)   
mamanan, I admire your courage and strength. You are the perfect example of showing
others that there is hope and the power of positive thinking is very strong.

Thank You for sharing your story.

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 9/4/2009 7:25 PM (GMT -7)   
Dani, (((HUGS)))
(Darn, I knew I had the name wrong!)
I sincerely hope you can find answers to your pain soon. I think that once you do, it will become easier to accept and move forward. And I am very sorry that you feel the need to leave. I think that we need people like you to balance out our self righteous butts! Yet I totally understand... forums do have a way of overtaking real life at times. I'm back for a bit, but we'll see how involved I get or how much time it takes away from my kids.

Jhemi, I am so glad that you feel better! And thank you for sharing your story.

Robin, your empathy and positive spirit really shine through in your posts. I'm looking forward to getting to know you better.
possible fibro and trigeminal neuralgia
50 mgs amitriptyline


KerriH
Regular Member


Date Joined Mar 2008
Total Posts : 316
   Posted 9/4/2009 8:38 PM (GMT -7)   
Mamanan,

I really liked your post! Thank you so much for sharing. :)

Kerri

Fibromyalgia since 2007

"No pessimist ever discovered the secret of the stars or sailed an uncharted land, or opened a new doorway for the human spirit."
 
Helen Keller


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 9/4/2009 9:12 PM (GMT -7)   
My mom has been under treatment for depression for decades. Years ago, I got fed up and told her she just needed to change the way she thinks, anyone would be depressed if they looked at the world the way she did. Her counselor talked to me and explained to me why it was hard for my mom to change.

Change and acceptance take time and you can't "will" yourself into a positive mindframe. If you are not ready, change is almost impossible. For some of us, it is a long process; two steps forward, one back. Some just can't get there no matter how hard they try.

Some people with chronic illness and/or depression can not think positively just because they want to. They don't know how, it's as foreign to them as calculus is to a 5 year old. They can read about it, friends, family and professionals can tell them how to do it but if their minds are not ready - they just can't see how to change the way they think. They want to change but can't right now.

Changing into a positive person may be easy or natural to some, but to others, it's a long, slow process. You have to start small and work at it and not feel guilt if you are not ready or you backslide on your journey.


Do people feel better because they are positive or are people able to be more positive because they feel better?

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/4/2009 10:38 PM (GMT -7)   
You make a very good point. I do believe there is a differance between people with a
negative attitude and those diagnosed with depression. I too have family members who
suffer from depression. Because I don't suffer from depression, I cannot say what it like.

I know what it is like to be a negative person, I was one for many years before any of my
illnesses. I turned my negatives into positives in my early 20's. I am now 57.
 
 We all know dealing with our illnesses isn't easy, that is why we are all here on this
 forum, to get support, share ideas and help eachother. We are all individuals who
 have differant needs.

 
I know we cannot change anyone, a person must change themselves. I have said many
times on this forum, A positive attitude goes a long way in coping with your illness. I
never thought that this sentance would be so offensive. My other catch phrase
 Attitude is everything!, came from my own personal experiance, it was never meant to
 be an attack. For those who I offended ,I am sorry.

Robin


 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements

Post Edited (crazykitty) : 9/5/2009 12:33:30 AM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 9/5/2009 6:15 AM (GMT -7)   
Mamanan...that was well written.  I personally think that negative people might actually have a form of depression.  They just don't realize it.  My husband was that way and for years we didn't know he was suffering from depression.  He didn't get tremendously bad until he started doing consulting work and was away from the family for months at a time.  He got so severe, he didn't want to be here anymore.  He even developed rheumatoid arthritis during this time.  (Kind of makes you wonder, huh?)  It turns out that he had been feeding off my positive attitude for years and when we weren't together he slipped way down and I thought I was going to lose him.
 
I have tasted depression...big time...when my husband died suddenly and my mother had a brainstem stroke that made her an instant invalid...all within 17 days.  I withdrew, looked at everything negatively, and went to bed every night praying and asking God to take me.  I didn't want to be here anymore.  It was like I was in a very dark room.  I didn't want to be there but couldn't find the light switch.  (Thank goodness I never stopped trying to find it!)  Depression made me very selfish because I had three children that I wasn't even thinking about!  My doctor wanted to put me on antidepressants but I wouldn't do it because I had always been a positive person and I sure had a reason to be depressed.  So, I worked my way out of it.  It was a slow process and took me about 2 1/2 years to do it, but I did it.  Depression is a horrible illness and it breaks my heart that so many have this problem.  But there is hope.....
 
I don't feel like anyone is being "righteous" when trying to help others.   I know what has helped me sooo much and I'm trying to describe it to the members.  I'm trying to give useful tools to use to get relief from the pain...and that includes looking more positively at things.  For example, you can look at a pot of marigolds and think..."These are gorgeous!  The yellow and oranges are sooo vibrant."  Or you can look at a same pot of marigods and think..."My god!  This things stink so badly.  Get them out of here!"  It's a matter of attitude, I guess.  This has helped me so much throughout my life and my journey with fibromyalgia and I'm just trying to share that.  Plus, this attitude does carry over in everything I say and do so it shows up in nearly all of my posts.  That just happens to be my personality and, actually, that was one of the reasons I was asked to be a mod.  I think that is what happens with any member that has the same type of personality.
 
Yes, we all have different personalities.  That makes us unique...that and our life experiences.  When we, including me, asks questions on an open forum like this, we will get multiple answers to the exact same question.  It depends whose eyes it's viewed through.  So, even though we might not agree with some of them, we have the choice to choose the ideas we like and discard the others.  No one needs to know which ideas have been discarded.  It's this that helps keep this forum a loving and caring place to be.  I know that I'm proud to be a part of such a wonderful group of people.
 
Sherrine
 
 
 
 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/5/2009 8:14 AM (GMT -7)   
Because I've had symptoms of fibro for my entire life it's difficult for me to identify with people who have lived as "normals" and then been hit by fibro. My fibro did become much worse when my arthritis arrived on the scene and all the pain was kicked up a notch to the point of disability... I've suffered from depression for years and have been on SSRI meds since they came out... I guess what I'm trying to say here is that when I found out what I had and that there was no cure I just told my doctor to give me ways to cope.

She was probably the key to my understanding of this disorder and set the tone for all of my coping mechanisms. I wish I could clone her. She said that if I did what my body wanted to do I would stop moving and curl up in a little ball... and eventually not be able to move at all. She told me that exercise and yoga would hurt at the time I did it but that it would keep me active and raise my serotonin levels. She explained that sunlight, especially walking in the sunlight, was a verifiable form of treatment for fibro pain. She increased my SSRI meds to help with my coping and pain perception as well as sleep patterns. She gave me some strong pain meds for occasional use and taught me to use them as tools to help me perform my job when it was absolutely necessary.

And as I followed her advice I saw that she was right. For me it was simple. Follow directions, use pain meds when necessary, exercise a bit (especially in the sunlight) and just KOKO (Keep on keepin' on!) I tried to have a pity party but nobody wanted to come so I gave up on that. Whenever I started to feel sorry for myself she told me about women who had this disorder in the past and didn't have meds to help them along. And although I was often in extreme pain while working late at night, I had to keep going because there were people depending on me. Giving up for me was not an option. Decorating wedding cakes requires concentration and pain meds make me fuddle brained so I had to work without them and only take them on delivery days. It's difficult for me to relate to people who can't work through pain because I have had to do it. ... So my opinion is skewed a bit. Maybe I can't help others here because I just keep going... Sorry for the rant... I just see this as a tempest in a teapot.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 9/5/2009 8:40 AM (GMT -7)   
Dagger, you asked, "Do people feel better because they are positive or are people able to be more positive because they feel better?"

I think for me, I was able to be positive only once I felt better, and that has continued so I continue to feel better. It's a cycle, same as the pain=inactivity=more pain. I also agree, it's not as simple as telling someone to have a positive outlook. One needs to be ready for this change. I have a hard time with my anxiety right now. I can't understand why it won't go away since I recognize it. I'm sure there is something that I am missing, and one day it will click. Just like the positive attitude mentality took some time to click with me too.

Jeannie, I'm sorry if I seem to be raising a tempest, it really isn't me intent. I think I just wanted to tell my side, how it is possible to change, and that the mind can have a very powerful effect on how we feel. I would like to help those who don't get it, or that mindset. I think you are a very strong person, and I really admire your tenacity.

I keep thinking back to an article I read, link posted here so long ago.. I'm sorry, I can not remember what the article was, where I saw it. Or maybe it was a video? For some new drug? Anyway, if anyone knows what I am talking about, I'm sure the link might be helpful again. I remember the speaker saying that part of the pain and fatigue of fibro is b/c of a chemical that our bodies give out when we are sick. You know, when we have the flu, all we want to do is curl up on the couch and rest. This is so we are forced to rest and heal when we are sick. People with fibro release this all the time. Once you get up and move, you feel better, but it's so hard to start b/c this chemical is telling us to do the opposite!
possible fibro and trigeminal neuralgia
50 mgs amitriptyline


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/5/2009 8:56 AM (GMT -7)   
I don't know if the members that were on here remember (fibro fog) the state I was in when I joined this forum a little over two years ago or not but I was in a very bad place mentally and physically. I'm not a positive person by nature and I get depressed very easily. I inherited depression and anxiety problems. I had just lost a grandson in Iraq that wasn't quite 21 yrs old a few months before I joined the forum. I was so depressed and felt like my heart had been broken in a million pieces. I went from the bed to the couch and didn't do anything that didn't have to be done and I cried all the time. The stress, not moving and psychological pain had turned the fibro on high mode, it had never been to that level before. Sadly, it has never gone back to the way it was before April 2007 and I don't think it will but I haven't given up hope.
 
I'm still mourning the loss of Michael and always will. The fibro is worse and we have added a couple more disorders to the mix for me to deal with. We lost a great deal of money in bad investments as others have and we don't know what our future holds. So why aren't I depressed??? Sherrine is one of the reasons, our Wittle Miss Sunshine as I call her, has taught me so much about life in the past two years and she probably doesn't even know how much influence she has had on me. There are other members on here that always give me a boost with their humor and positive attitude. My dear sweet uncle that died just a few months before Michael was one of the most positive people I have had the pleasure to love. I draw strength from these people because I want to be positive and always want to see the glass half full. It didn't happen over night, it is a process.
 
I still have my days when I get down but I have to have a little talk with myself and look at all the good in my life. I don't ever expect to be as positive as Sherrine is but it is not a contest. I have just figured out that each day is going to pass us by no matter how we chose to think so why not try to make the best out of it.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/5/2009 2:29 PM (GMT -7)   
OMGosh, Mamman and all! Didn't mean that comment as a criticism... So very sorry to cause you to feel bad. Should keep my mouth er fingers shut... I just find us to all be so very sensitive right now.

I can SO relate to this sentence, too, "I'm sure there is something that I am missing, and one day it will click." I'm that way about my depression. I logically know that one day the tide will turn and my joy will come back so why not now?

Fibro is an insidious disorder because it doesn't show on the outside, has no discernible or measurable lab results and is generally misunderstood in both the lay and medical community. Hopefully we can support each other in this pain because we are the only ones who really understand us. Wishing all less pain and better coping.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross

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