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Messages By: fyte4acure

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September 22, 2005, 2:28 pm CDT

Surviving Invisible Illnesses -FIBROMYALGIA

To those suffering: 

  

I really want to applaud you first of all for being brave enough to come online here to share your stories with all the die-hard Dr. Phil fans.  It is a first step to take in coping with chronic and difficult to deal with illnesses.  And thank you so much, Dr. Phil and staff, to allow this site as a communication and reflection for those with chronic illnesses and pain. 

  

I also want to tell you that I have an illness that I share with many others, unfortunately.  It is very painful.  I don't know why they use the technique called pressure points to diagnose this illness when there are more than 18 points on my body that hurt.  Anyway, I didn't come on this site to message a bunch of complaints about my pain because right now I need to focus on the positive at the stage of coping I'm at.  I'm not saying you all do not have a right to vent.  I have done my venting, and plenty of it.  I have one main purpose to post a message on this site and I want to stay focused on this. 

  

Reason #1:     WE NEED A CURE!  Since we aren't getting one at this time, we need to fight for it, stand up for ourselves, not allow the general public or doctors to tell us that this pain is in our heads!  We need to contact government officials and let them know they need to fund more research money for the cure of fibromyalgia.  A very nice organization in Wisconsin, the Wisconsin Chapter of the Arthritis Foundation is pushing for some legislation to fund for arthritis and other related illnesses such as fibromyalgia.  We need to contact our state representatives and contact the arthritis foundation in our state and FIGHT 4 A CURE!!!!  This will not only let them know that we won't put up with this illness without some funding going for research to cure us, but it will also get us out of our "feel sorry for me" attitudes that arise when we are delt a bad luck of cards in life of chronic constant pain and dealing with an illness doctors know very little about.  We have every right to ask for funding and a cure for this illness.  Don't allow them to get you down, thinking there is no hope.  You are far more valuable than to become a rug to be walked on day-in and day-out.  Hopelessness will not help in the fight for a cure.  Please join me and stand up for what you deserve!  Connect with others fighting this illness and become strong in numbers.  You will be amazed in what changes can be made.  It is estimated that over 5.8 million people have fibromyalgia.  That is a lot of people.  We are not alone and need our voices to come together in helping to push for legislation in funding for a cure.   

  

So many times I hear people crying out for help to the wrong people.  It is okay to vent, and I've done my share, but please do not forget the next step:  Writing to our state representatives, asking for more money for research on fibromyalgia. 

  

Thank you so much for your time in reading this.  Let's be strong, come together, and do what we can do best as a team, FIGHT 4 A CURE! 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

 
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September 22, 2005, 2:51 pm CDT

Fight & struggle is correct! Fight 4 a Cure!

Quote From: grimli

Hi, 

  

Like the title said. 

  

I have found my way here. 

  

I know since dec 2003 that I've fibromyalgia (fibromyalgie). My world fell apart. Because I was only 28 at that time. I found it unfair. Why me, that young. I want so much, but my future has change, not knowing what kinda work I could do.  

Just sitting at home feeling sorry for myself.  

  

Very slowly, with help from my parents and friends I crawl back.  

  

But my turning point was, when I was at de youthmeeting for youngs with FM. I realise, if I want to work again, I have to change the way of living.  

I need structure in my life. Each day I wake up at same time, if the pain hasn't woke my up to early. And very slowly I walked 10 minutes, three times a day. And now, 6 months later I walk 2 times half hour.  

I even dare to think about working again. I've started wit a hobby study pshychologie (don't know engelish word anymore). Now I know I want to help others with the same illnes, especially young ones. Because the have differents problems. Study, school, work, relationship, kids or not.  

So I decided when I have enough money I wil go to do study psychologie on high level.  

  

Right now I ork on a book, youth with firbomyalgia. because there is no books that is focus on them, but talking about others problems. And some one has be the first, so I decided that.  

  

2004 was not my year. 2005, up till now, is has been my year. I became stronger and now I know, there is for a reason that I have FM. To help others. To carring out my positive.  

I write on my own site every day journal. 

and I hear from them that my story help them to lift up to. Not to feel alone with there feelings.  and because I try look everything on the bright side. 

  

Yes of course I have my bad days, I wil always have bad days. But my good days are more. Step by step I get what I want. 

  

But I was wondering, do the Americans goverment reckonise FM, for the Dutch do not. We have to fight and struggle to get something done. But how is that in America? 

  

Sincerly, paulien 

America is starting to recognize it, but for the most part Americans are ignorant.  Read my recent posting regarding a fight for a cure.  We need to come together in numbers, whether it is the USA or the world.  We must connect in finding a cure for this FM. 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

 
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September 22, 2005, 2:57 pm CDT

Find a better Doctor

Quote From: cprouty

Hi everyone, 

  

First time user and have been reading your notes.  How about Fibermyalgia?  Have no arthritis but this is getting really bad.  On top of that pain the meds are killing my stomach.  My grandchildren don't understand why Nana can't play like she use too!  Does anyone have any suggestions?  My doctor says it's only going to get worse and has advised me to go on disability.  Please Help!! 

Please do find another doctor.  While your doctor may be telling you the truth, the doctor should also provide some hope for you, not make you seem like damaged goods.  I will not go on disability as I am stubborn and want to make something out of my life as I am still very young (30).  You are the one who decides on disability.  It is okay to do so if you wish.  However, You are not damaged goods!  Please read my comment recently posted on funding for a cure. 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

 
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September 22, 2005, 3:01 pm CDT

Book on Fibro for youngsters

Quote From: grimli

Hi, 

  

Like the title said. 

  

I have found my way here. 

  

I know since dec 2003 that I've fibromyalgia (fibromyalgie). My world fell apart. Because I was only 28 at that time. I found it unfair. Why me, that young. I want so much, but my future has change, not knowing what kinda work I could do.  

Just sitting at home feeling sorry for myself.  

  

Very slowly, with help from my parents and friends I crawl back.  

  

But my turning point was, when I was at de youthmeeting for youngs with FM. I realise, if I want to work again, I have to change the way of living.  

I need structure in my life. Each day I wake up at same time, if the pain hasn't woke my up to early. And very slowly I walked 10 minutes, three times a day. And now, 6 months later I walk 2 times half hour.  

I even dare to think about working again. I've started wit a hobby study pshychologie (don't know engelish word anymore). Now I know I want to help others with the same illnes, especially young ones. Because the have differents problems. Study, school, work, relationship, kids or not.  

So I decided when I have enough money I wil go to do study psychologie on high level.  

  

Right now I ork on a book, youth with firbomyalgia. because there is no books that is focus on them, but talking about others problems. And some one has be the first, so I decided that.  

  

2004 was not my year. 2005, up till now, is has been my year. I became stronger and now I know, there is for a reason that I have FM. To help others. To carring out my positive.  

I write on my own site every day journal. 

and I hear from them that my story help them to lift up to. Not to feel alone with there feelings.  and because I try look everything on the bright side. 

  

Yes of course I have my bad days, I wil always have bad days. But my good days are more. Step by step I get what I want. 

  

But I was wondering, do the Americans goverment reckonise FM, for the Dutch do not. We have to fight and struggle to get something done. But how is that in America? 

  

Sincerly, paulien 

Good luck on your book!  I hope to read it someday soon! 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

 
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September 23, 2005, 7:08 pm CDT

Dear Karin

Quote From: dutchkarin

I'am 38 years young and since 14 years I know that I have Fibromyalgia (FM), I had many many bad years, I was in a wheelchair I could not walk for 15 minutes. 

Since 1,5 years I feel so much better that I start working again, I ever use my wheelchair. 

I start with a new hobby.......running so you can feel better with FM, I 'am not everyday painfree but I can handle it. 

  

For 1,5 years I found a doctor who gave me good advice, I use now some supplements and a diet against the pain from FM, and I feel much much better. 

I can by the supplements in a drugstore no problem at all, I use a Magnesium, MSM, mutlivitamines, omega 3&6, and chlorella. 

  

I hope you can read my englisch because it is not that good,I am from Holland. 

  

Perhaps you can find a dochtor who can help you with this??? 

Take care,Karin 

Dear Karin,

  

 

 

  

 

Isn't that amazing!  MSM works for you too!  It worked for me as well.  I am a chocoholic and I've found that there is lots of Magnesium in chocolate.  Correct me if I am wrong, but I believe I am biased on this to justify my chocolate cravings and habits.  Luckily I have my father's metabolism and stay at a steady 130 - 135 lbs... Thank God!  I'm also very active, which helps keep the weight down.  I did not know about omega 3 & 6.  I shall ask my pharmacist about that.  I know nothing about chlorella.  Again, I will ask my pharmacist about that too as well.  Thank you for sharing your story!  Your English is better than my French, although I try not to swear, ha ha.

  

 

 

  

 

Unfortunately I do get too active and pay for it.  I love long bike rides in the country.  I am also an apartment complex manager.  Painting, mowing, cleaning, vacuuming, fixing up dry wall, and fixing anything else keeps me busy.  Unfortunately I have more than I can handle in pain.  Pain meds do not do well with my stomach so I only take them when the pain is too much to bear, because I get allergic reactions and get nauseated as well.  But I'll take a few skin break outs just to be able to put up with the pain better.  I find that when I take them on occasion, my body does not get use to them and I'm better able to handle the pain when I do take them.

  

 

 

  

 

I hesitate, when I apply for jobs to mention I have this illness.  Employers, often just like doctors, think this is an "In your head" syndrome.  I feel sorry for their ignorance, but that just means I must stay silent when I apply for jobs.  I just graduated from college with a double major in social work and psychology.  I hope to help others improve their quality of life.  I will get my certification soon in social work. 

 

  

 

I could NOT, absolutely NOT, go on disability.  There is no way in God's green earth will I be told I can only make a certain amount of money and never be able to afford a loan on a house.  I want to live out in the country and feel the nice breeze go across my skin and hear the silence of the country life, as I once knew when I was a youngster.  My goals are to get a good paying job, support myself, pay off my student loans, write a few books on what it is like to live with chronic pain, publish lyrics, write songs, and help to improve the quality of people's lives.  I want to live a lucrative and comfortable life, regardless of the unbearable pains.  I will not allow the government to tell me how much money I can make.  Also, the word disability really peeves me.  I am able to do so much, yet they call it a disability.  The word "disability" should be changed for those who get governmental assistance.  It is a self-fulfilling prophecy to say, "I'm on disability."  Anyway, I'm rambling, ha ha.  What I'm trying to say is that I won't go on disability because I know in my heart and mind that I have too many abilities and frankly they couldn't pay me enough to stop working.  For anyone else it is his or her prerogative, but I will not go on disability.  My doctor said I should get on it, but I told him "absolutely not!"  Working brings a sense of productivity in my life.  I would feel worthless if I could not accomplish things.  Although there are times I cannot do so much or deal with more pain than I can handle, I still remain strong and accept that I can only do what I can, but I will not give up totally.  That's my opinion on disability for me, and I will only hold myself to that degree of expectation.  Whatever anyone else does is up to them, but not their doctors.

  

 

 

I hope to help others to realize they are not along in this, and let them know that speaking up to the government to demand for some more funding on medical research for fibromyalgia will empower us! 

 

  

 

Thanks for listening and replying,

  

 

Kristie : )

  

 

fyte4acure

  

 

 

  

 

  

 
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September 23, 2005, 7:09 pm CDT

Living with Chronic Pain

Quote From: wlehmuth

  

  

Hi Kristie 

  

Please go to the following web-site . I beleive that it may help you as well as many of Dr.Phils Readers. Now this is the Best one that I found so far in 4 years. 

  

http://www.ImmuneSupport.com 

  

This site will take you from Doctors to Meds to Diability and Lawyers. 

  

Sorry to hear about your problems, but maybe this will be helpful . Take Care and God Bless You 

  

Will 

Will, 

  

It is ironic you mention this website.  I've been a member of it for a long time coming now.  It has helped me out tremendously! 

  

Thank you, 

Kristie : ) 

fyte4acure 

 
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September 24, 2005, 7:03 am CDT

Bad meds! Bad BAD BAD Meds!

Quote From: nekocats2

Hello 

I am new to this site. I normally post on the depression board which is a wonderful support system for me.  I am here to try and get some ideas from others who suffer from the never ending pain on the 24/7 basis.  Here is a bit about me.  Hope I don't bore you all. 

  

I have had two cervical spinal fusions.  The first in 1999 with a fusion using part of my hip bone.  The second in 2003 using a titanium cage.  These are C4/5 & C5/7.  I suffer from neuropathic pain and when a low pressure system comes in, I know. 

  

I have stenosis and budging disks in L4/5 & S1.  The pain never stops.  I have been on so many medications and not much works.  I was on high doses of Neurontin which almost killed me.  I now take oxycodone, xanex, and effexor.  Sad thing is, if I run out of the oxycodone, it will kill me.  I am physically addicted due to the length of time I have been on it.   

  

I have been unable to work since 11/01 when I injured by lower back again.  I feel like a total failure in life.  I was once very productive.  I was even a volunteer firefighter/EMT and was studying to be a Paramedic.  That is now all gone.   

  

Thanks for listening.  Any suggestions?  I hate life right now.  Just hate it.  I feel worthless and feel like a looser.  The pain causes depression as I am sure many can relate. 

  

Thanks again. 

Nekocats 

Nekocats, 

  

Sorry to hear about the Neurontin.  I tried that crap and it made me depressed.  They also put me on a med called Tramadol.  That stuff made me violently ill.  I became very dizzy and sick.  I was throwing up during bike rides.  I was not my happy-go-lucky self anymore.  I would not go on high doses because the med did not touch my pain one bit anyway.  Why take high doses of something that you aren't sure will help you, especially after you find out it messes with your mind psychologically, as well as your body chemistry.  I will never try that stuff again.  I also do not take anti-depressants for pain.  I am not depressed and they only increase my heart rate really badly.  Plus they make me feel like a zombie and I can never sleep enough while on them.   

  

Please tell me more about your volunteer work.  I would love to hear about it! 

  

Take care, 

Kristie : ) 

fyte4acure   

 
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September 24, 2005, 7:29 am CDT

Trapped?

Quote From: betty8271

I've had fibromyalgia for 3 years and have just been diagnosed with something more; Connective Tissue Disease (A cross between systemic lupus and Rheumatoid Arthritis).  Do you see a Rheumatologist?  If you can get into a good Rheumatologist, they run specific tests that can determine if you have more than Fibromyalgia, although I know Fibromyalgia is debilitating.  Something I learned the hard way was get your doctor to refer you to a Rheumatologist and DO NOT TELL them you have Fibromyalgia.  This is what I did to get into a Rheumatologist and he ran every test under the sun.  You may already see one, but usually they do not want to deal with Fibromyalgia

 

I could be wrong, but I think you're doing too much.  Swimming and walking are good, but anything else will send you into an ongoing flare.  Yoga is great, but find something like "Easy Yoga" (I have this DVD and it's really modified perfectly).  The hardest part is knowing your limitations. 

 

Just remember that it's ok to rest. 

 

My physician said for me to take a lot of magnesium for the muscular pain.  I'm also taking a supplement called Hyaluronic acid and that seems to be helping the joint pain.  People have had a lot of success with Aloe juice.  I went into physical therapy and they let me try a TENS unit.  That has been great!  If you can get it on the right nerve in your leg and leave it on for 20 minutes, it sends endorphins throughout your body that can last 3 hours and really cut the pain level.

 

This disease is not happy.  No one seems to really believe you're ill.  "You look fine."  Or they give you a lot of advice on what their friends/family did for a totally different illness that doesn't even pertain to what you're going through now. 

 

Betty, 

  

I have heard the saying of being trapped in an old body.  I have joked and said the same thing myself.  But now I've come to realize I am not trapped.  I am unique.  Having this illness has made me strong.  I've realized so much about myself that I have not known.  I have connected with people in ways I hadn't before this illness.  This illness has tested my strength and made me a stronger person.  You're probably thinking, "Oh Lord!  How can anyone respond positively to such a painful illness?"  Well, I've done some coping for sure.  I've gotten past the helpless stage though.  I no longer feel trapped. 

  

People have told me I look fine.  I know I'm very attractive!  I am glad this illness does not show it's ugly face.  However, it does sometimes, like when I try to walk or be active.  I appear crippled.  But I thank my lucky stars that this illness is mostly invisible. 

  

Yes, people do give me advice on how to improve my health.  Now I just listen and realize they do not understand, but are trying to help, because they care.  I am grateful that they care. 

  

Yours truly, 

Kristie : ) 

fyte4acure   

 
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September 24, 2005, 9:46 pm CDT

Dr. Mrs. Bell

Quote From: hmbell

I have fibromyalsia and am in a lot of pain.  I begin going back to school this fall planning on obtaining a degree in elementary and special education.  I don't think that my husband quite understands my disorder but my children usually help me out.  I take all of my meds but it doesn't seem to help much.  When I try to exercise I usually can not walk for the next day or two.  Does anyone have any suggestions?

I am glad to hear your story.  It touches me for sure. 

  

I think you are a strong woman!  To pursue a degree and raise children, and do so with fibromyalgia, WOW!  You are strong like me!  Continue on your goal and do not let anyone distract you from it.  You can do it! 

  

Suggestions on exercise would be located on a website of Immune Support.com.  They are great at giving medical advice for people with fibromyalgia.  There is also a chat site in Immune Support.com, in which you can receive lots of personal stories of what has worked for those who are also in your shoes.  I wish you the best!   

  

Personally, I hurt like heck after doing physical activities, but it still does not stop me.  Please read my previous postings the past few days.  I simply do what I can. 

  

Yours truly, 

Kristie : ) 

fyte4acure 

 
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September 24, 2005, 10:01 pm CDT

Living with Chronic Pain

Quote From: hmbell

I have fibromyalsia and am in a lot of pain.  I begin going back to school this fall planning on obtaining a degree in elementary and special education.  I don't think that my husband quite understands my disorder but my children usually help me out.  I take all of my meds but it doesn't seem to help much.  When I try to exercise I usually can not walk for the next day or two.  Does anyone have any suggestions?

As for your husband... I think that it is difficult for him to accept that a disease has taken control over you and he probably feels helpless in helping you out.  Significant others are very protective, and maybe he feels that he cannot help you and wishes he could help you be complete again, but doesn't know where to start.  This is just a tought.  Stress can be hard on him.  Truly this illness is hard for anyone to understand.  I don't understand it.  A friend of mine has CFS - Chronic Fatigue Syndrome.  She had this a few years prior to me coming down with fibromyalgia.  I could not understand her illness, but today I know exactly what she's going through.  I feel evil when I say this, but I'm going to say it anyway.  I pray that one thousand doctors get this illness.  Only then will they begin to realize how real the pain and other symptoms are, and maybe they would be more decent and understanding to their patients.  Sometimes people do not listen and need proof before they believe something.  They do have tests coming in the near future to prove fibromyalgia.  I just wish they'd find a cure though.  Please do write to your state representatives, and ask them for more funding for research on fibromyalgia.  Also, you may contact your state chapter of the arthritis foundation and share your story there, as well as have them send a letter for you in regards to the bill they are trying to pass regarding more funding for arthritis and fibromyalgia research. 

  

Yours truly, 

Kristie  

fyte4acure : ) 

 

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