Topic : Living with Chronic Pain

We can always hope that they will find something to help us! My dr is the leading specialist in the Carolinas over here in US, and he says the earlier CRPS is diagnosed, the better it is to try to control the symptoms and keep it at Phase I. But there is no cure. You can check out his website at Piedmontpmr.homestead.com if you want to see what he says about it. Also, check some of the messages for the last couple of weeks, there is another website for a dr in Florida who treats CRPS also that is very good. :)  

The message I referred to was a "commercial" type message for some kind of supplement. Apparently the chronic pain just dissapeared and the person was pain free now, please call blah blah. I was very offended. Glad you didnt see it, but it was addressed to you.  

I hope you have a low pain day, gentle hugs-Mel 

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 : ) 

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 : ) 

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 : ) 

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

Yours truly, 

Kristie B. 

fyte4acure : ) 

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 

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 

i had total shoulder replacement surgery on monday [due to osteonecrosis/AVN] -- and while the surgery will, i think, turn out to be a success over time -- the pain management was a disaster.  my pain management doctor doesn't follow patients during their hospitalizations and so that pretty much put me at the helm.  as much as i like to be bossy, i'd much prefer a doctor making the suggestions!  my home regimen of 20 mg methadone with oxycodone prn wasn't sufficient to cover the post-op pain.  well, d'oh.  "did i think that adding a PCA pump using dilaudid would be enough?"  i didn't know and when it turned out that the pump wasn't enough, it took lots of fine-tuning of the timing of each drug's delivery.  what ended up helping were staggered delivery times. 

if you have chronic pain, with acute pain on top to that,  be sure to come to some sort of understanding prior to going to hospital.  i was very short and tearful when i had some areas at a TEN and others at a SIX... and must have seemed like a wack-job when attempting to keep anyone from touching my CRPS/RSD involved sites. 

the last part of the story -- the night after the surgery i woke to my own yelling.  my left leg was in the air and i was having trouble breathing.  the crps/rsd decided to flare with a vengence in my left leg -- and i was developing some bronchitis.  two nurses were there and, bless their hearts, they were trying so hard.   

maybe i have shielded myself from the memory of how crps/rsd felt the first time around, but it's absolutely unnerving.  it took a lot of convincing for me to believe that the bottom of my left foot wasn't blistered fire. 

i am thinking of trying to get a symp. nerve block early next week but don't know if they can do one with my shoulder being so bad.  they did three blocks on my shoulder -- 2 pre and 1 post -- to no effect.  i wish i knew what would help.   

my guy is more than a little tired of all this.   

insult to injury -- i lost a lot of blood.  the offer was "you can stay an extra day and get a transfusion, or you can go home and be very careful and take iron." my h and h was 8 and 27.  i just feel a tiny bit weak physically -- but enormously weak mentally. 

maybe there's nothing so unusual about that! 

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