Topic : Living with Chronic Pain

hi my name is sue    and i suffer from  chronic pain  and fibermyalga  .  im older than u by a few years  but after a accident with my school bus   i suffered with pain   although  i had no injury. 

after years of doctor's trying to figure out what was wrong with me.  i had carpel tunnel surgery on both wrists.   i have resless leg,  irrible bowel,  throid problems,  and pain  all the time. i take meds every day  they  help  cause once i stopped taking them  cause of all the pain and not feeling  better and they cost so much,  but then i got worse pain   and depressed  so bad i tried sucide. 

i was always a active person  bowling ,golfing,  and playing adult softball,  then after the accident' 

i could not do anything,   i cant walk   so it was even  out of question to even  go watch  my grandson's  at sports. which  i love. i  have periods of remission, depending on weather, is how  

much the intensity of pain is.  i have been trying a new diet   and my pain has  been less.  its a protien diet  like adikns diet.  i eat no breads  lots of meat  and salads   no white vegatables  all 

yellow and green  is good for you.  i want u to try this   and hope it helps your  pain also.  my prayers and thought's are with you and every person  who has to live like us.   

love and prayers 

sue 

  

Because many are sceptic about Candida yeast causing Fibromyalgia I have created a new entry today in my shared diary from many doctors on candida and fibro and how it is caused and why the use of probiotics (which imparts oxygen to our bodies) is a must.  It is copied from various doctor sites - my words are not added.  I am not a doctor but they are. 

If you would like to read this information, please click on my name, then to diaries of this user, then click on the name of the diary.  The info you wish to read is 10/12/05 Fibromyalgia.   

 Why can't anyone without Fibro try to understand. Since my diagnoses 3 years ago, and who knows how long I have had it, the only person who seems to care is my husband. Yes, he is the most important person, but Drs. or other family members would be nice. Today I went to my Dr. for a regular monthly check-up, he tells me that unless I go to his buddy the pain management Dr. he can no longer prescribe meds because " you can never tell sells them instead of taking them ". What a crock !! This Dr knows me, a small town, he works with my daughter at the local hospital where she is a nursing supervisor.  It just so happens that with my former job I was quite involved with the hospital. Now this !!  I had only been on Darveset 100, after weening off of Duregesic 75 nine months ago. I know my body, the Darveset wasn't relieving the pain so I needed something else for a few months before going back to it.  I asked for Tylenol 3 or 4. He then left the room and his nursing asst. brought me back a 1 month prescription for #4. I am so upset I've decided to change Dr's. 

 The good days are when the kids and grandkids come for a visit or we go there. At least our kids are close to our house. Their success in life is my joy, a nurse and an engineer. And to see grandchildren that are part of you is fantastic. Then there is my husband, he makes me complete. After a bad first marriage I never know I would meet someone like him. But the constant pain with all the added symptoms with fibro can be a little to much to bear. Why isn't there 1 medicine for this ? Why do the available ones cause so many side effects? Are any of the drug companies working on this?  I have a lot of questions. If anyone has any help let me know. 

  

willvill 

Am very surprised to hear that opc's kill all your bacteria.  that wasn't my experience--I've taken pharaaceutical antibiotics and know what that feels like and haven't had stomach disturbance with grapeseed extract.  I am very fascinated with learning all I can about why folks get sick and how they got well, so this has me curious.  Am putting out the intention to find out what's up with this stuff as it certainly helped me.  By the way, I haven't used it much lately.  My diet is fairly good and I don't seem to get the muscle issues as much because of the herbs from the amazon that I've been taking for the last 4 years.  There's also a wonderful anti inflammatory called Zyflamend that I will take if I have the extra pocket change--its all food and herbals and outperformed Vioxx in a Columbia Medical School study on joint pain.  It really loosens up my sore muscles--I'm a massage therapist, a very physical type of job. 

  

I love you enthusiasm for alternative healing.  Wonderful to see.  Blessings, Linda 

Yes, the drug companies are working on this. I'm aware of one study for a non-narcotic fibromyalgia medication that shows great promise. Some of the people working on the study hope that the medication will be approved within a year. So keep your hopes up!

I'm a breast cancer survivor and a chronic fatigue syndrome survivor, and hearing rsd stories, i feel like i've been thru a cake walk in my life. 

  

I do a bc survivor group at the day spa where I do massage therapy, and sat in on the rsd group.  I shared a couple of things that have helped my cfs and sore muscles from massage--I realize you're dealing with neurological issues, too, but if you feel drawn to try either of these let me know if they help.   I know a couple of local naturopaths and plan to ask soon if they've encountered rsd, and if they've been able to help. 

  

Grapeseed extract was what turned my cfs.  I had been taking 50 to 100 mg, then upped it to 300 mg a day; the next day i was awake more time than asleep and my muscles were fine.  I had muscles that if I lightly bumped the door frame would feel as if I'd been hit by a hammer.  That was about 8 years ago.  bastanz, I believe says he as heard that opc's which is what grapeseed extract is kills all the bacteria in you body--I plan to check that out; no stomach problems for me on grapeseed extract, so I don't know. 

  

Nowadays I get sore muscles from my work and tend to run tight anyway--there's an anti inflammatory called Zyflamend from New Chapter supplements that outperformed vioxx on joinlt pain in a Columbia medical school study, and the first time I took it 20 minutes later my back felt 50% looser and 50% less painful.  The ingredients are all food and herbs; you'd want to check out the ingredients to be sure they don't conflict with any pharmaceuticals you're currently taking, check in with your md, etc.  The pencils started to move quickly (which probably hurts to do) at the group, so will try to do another post in a couple of weeks if I can duck into the support group and find out if it helps anyone.  There was one woman who said vioxx had helped her very much untill it was taken off the market. 

  

I've seen a lot of healing happen in myself and others, and it seems to me there are maybe 3 important areas:  emotional and stress issues that make things worse, being able to detox the body without making yourself feel worse or get sicker in the process, and being able to optimally feed the body so it has the building blocks to heal the cells and even to heal the dna (which changes just a little bit every day I believe).  There's a fourth thing, having support or prayers from other people, which there are about 300 studies now to show that prayer helps.  A positive support group that really wants to figure it all out and get better is so powerful. 

  

I think you can get better; am not sure how, but there has to be a way.  Take care as best you can, Linda 

 Hi,
My name is anna i have had firbromylasia and rhumtiod arthrtis for 7 yrs Iam 34 now.
I understand how you guys feel and it makes me mad that people will not or cannot undersand what its like or that  people will not do shows on it...dr.phil lol.
Noone cna understand how this feels.And if you check out stastics you will see msot afeected are a type personalitys out going fun loving people not lazy bums who love to complain.
when i got sick i was young and active and loved to sing ,dance,horsebackride and camp,and do lots of activtys i have 3 children and i was verya ctive and nto type to ever complain much at all.
when i got this disease i was in shock i went from being vitl to veggie soemdays.
I cannot on soem days dress myself or even going to the bathroom down hall seems like a ten mile hike.it zaps ur energy it kills ur moods it hurts like crazy.
yes we often complain btu think of it from our point of veiw soem of society doesnt even accept it as a real diesese maybe soem r complaining to get u tio understand what this is like when u bager us to go out to ge tmoving when we simply cannot soem days.
i lost most of my freinds who cant understabd how i feel or why i cant go  running or dancing anymore who dontget im sick because t them im young i dont alway look sick even if i am.
i get so much  predjudice with this disease.if i nee dhelp ats tores with  electri carts older peeps and yuoung look at me like how dare she use handicap stuff she looks fine to me.
i dont complain often because people think we whine,it has to be a 6 or above day then i will complain and if soemone dont like it dont come around then.
how dare poeple not try to understand or go to doc with us to see for self whatis going on.
how dare they think were making this up for fun.
go to fibrohugs dotcom and look at the list fo sytmpms then tell me u wou;ldnt to complain ther eis over 100 sytems and a fibro patient cna go thru any 20 to 50 of them in one day!
and those of us like me with no help[ or insurnse to egt our meds can tel lu how bad it can get.do you well people know what its like to have ur kids help u go to bathroom or to have to clean for u or do for you? or to feel pain so sharp and intense u wish ud never wake up again? i thank god that god watches over me and helps me thru the rought times and that my family finally gets it.
but something needs to be done about this disese and exspose it to  people so they know.if u did a show and i missed it my apoligies but soemone shld do it.fibrohugs has written to oprah and mayothers and no one will touch the issue they say its nto recgnized diesese and so on and so on but i gueantee u the minute soemone famous gets it it will be allover tv.
wel lim just a little person but we need help.
its so many things take forver to list but here are some things we go thru,
sleeplessness,memory loss,foggy spells,ibs,sensitvity to light sound and touch,allergies,cfs,severe joint pain,overwhelming fatugue,depression,tremmors,loosing balance,headaches,dry eyes and mouth,unable to walk somedays with outhelp cant move from bed cant dress self,loosing friends and family,people thinking were just lazy hypochindriachs and many more medical issues on top of having rhumetoid arthrtis to as a double whammy.go to the sitementioned chk out all they syptoms and see fo rur self what we go thru and dont u dare judge les su walk inour shoes.thankfully i have 3 great kids 15 16 17 who help me and love me an dunderstnad oindays plans must be change d because mother cannot do things sometimes andneed sleep
or pain meds.
and please someone do a show on this disease before soemone famous does fo rthe lil people.
and do not judge anyone less u have been there.and remember complaing...is sometimes a way to reachout not gain just sypathy when noone wil help us.
anna tn

Any time!  Immune Support . com is doing a wonderful thing for us! 

  

Kristie : ) 

fyte4acure 

I couldn't have said it better myself!  Thank you for posting your thoughts.  Also be sure to tell your state representatives exactly how this affects you and others, and ask them to support a bill called the Arthritis Prevention, Control, and Cure Act of 2005.  This act helps not just with arthritis, but specifically fibro and lupus as well. 

  

Again, thank you for posting your thoughts.  I hope they do a show.  I have my doubts though, because most will not want to do something on a disease they hardly know anything about.  They do not know how much peace it would bring us to shed some light on the subject and speak up about this on a talk show.  I have heard Montel mention fibromyalgia once before.  He's a sweetheart for doing so, even though he didn't focus completely on it yet.  Let's bet on who will be bold enough first, Dr. Phil, or Oprah.  People have written many letters to Oprah, and many message boards memos have said that she doesn't believe in fibromyalgia, as they once heard her say this on the show.  If it is a rumor, and not true, then why would she do a show on her hair style versus on something that can be beneficial for 5.8 million who have this disease.  Why would she ignore so many people who have written into her for just some recognition that it is an illness the public should be aware of.  We are discriminated against all the time, by doctors, by teacher, by friends, and family, etc.  AT the work force, if we manage to continue working, we are really discriminated against.... if we tell our employers why we have difficulties with pain and finishing a job in the time they want us to, or tell them why we don't show up for work, etc.  Enough is enough.  We need someone to help us get our voices heard and stop the endless cycle of discrimination that continues to make it so hard on us to survive this illness.  It's bad enough we have the pains, but then add the mental anguish that comes along with ignorant, cruel, judgmental people.  We do not deserve that. 

  

Keep up the fight! 

Yours truly, 

Kristie : ) 

fyte4acure 

My message to you came up on the other board, but your message is on this board.Thanks for your interest in learning more about natural health.  I too try to help people.  It is NOT  about stomach disturbance with OPC's but what flora they take away.     

We have to first understand our gut – our first line of defense.  So these items from been extracted from my shared diary on Health.

   

 

  

The usual bacteria attached to the intestinal wall are benign and do not harm us. These bacteria don't make harmful chemicals or provoke immune responses and inflammation. The use of antibiotics or OPC's can clear out these more benign bacteria which makes room for yeast and other disease causing bacteria.

   

 

How it works:  The body has a system of cells called the immune system for fighting foreign invaders. The more difficult foreign invaders have tricks to evade the body's immune system. The result is that the immune system is constantly fighting. These interactions can lead to major problems.  These diseases are all marked by the body's immune system attacking the body's organs in what seems to be a prolonged war with no resolution. The body's immune system is designed to fight foreign invaders.

   

 

Why should the body's immune system instead attack the body's own organs?   Both yeast cells and human cells put out receptors, branch like structures which extend from the surface of the cell. Human cells communicate with each other this way. Some receptors are used to anchor cells to connective tissue. Some receptors are for the immune system. Some receptors tell what kind of cell the cell is. Some of the receptors are like fingerprints and are unique and tell the body that this cell is one of the body’s own cells.  Cells which are foreign do not have these cell-identity receptors and then the body knows that they are foreign. The immune system is supposed to recognize self and not attack self.  Yeast cells for unknown reasons are able to display a number of human receptors.  Candida can display on its surface the human connective tissue receptor.   Candida does this well and displays a number of human receptors.

   

 

Under such conditions, the immune cells which are turned on to fight Candida but they are also turned on to fight any cells which look like Candida, which are our body's own organs.  The immune cells which fight Candida can also attack our body's own organs, resulting in diseases. Chemicals in the diet which kill bacteria will make room for the yeast.

   

 

So now we have:  herbs that are OPC!  Oligomeric Proanthocyanidins bioflavonoid complexes (or antibiotics) that perform as Free Radical scavengers in the human body.  Because antibiotics and Grape Seed and other OPC herbs are doing its job hunting down free radicals, it is also fighting the good in our gut because Yeast cells for unknown reasons are able to display a number of human receptors.

   

 

So it all comes down to getting rid of the bad only in our body.  Natasha of Natren probiotics (Healthy Trinity) was called by Congress and has written into the records of Congress setting the standard of putting the good bacteria back into our bodies which protects us because many companies are now producing probiotics with strains that may even do more harm than good.  By adding the right strains back which was taken away with antibiotics, OPC’s and others; we have a chance to get back our immune systems.  Probiotics (gut flora) is all new to the medical community but is being recognized only now by Congress.  Think of Yogart - but that is only one flora.  She says that this gut flora should even be taken at least 2-3 hrs after herbs and antibiotics.

   

 

Natasha just happened to be on the first half of the Kaufmann:  Know The Cause show yesterday. Very informative and for everyone’s sake I hope there is a repeat of Natasha speaking on the show. I watch this show eastern time at 12:00 noon everyday.  9:00 Pacific.  He has been around for 35 years and the medical community still doesn’t get it.  Dr. Phil should have Doug or Natasha on to help for medical symptoms vs mental.

   

 

Please keep reading my shared diary for more info.

   

 

For the FDA:  This info is not meant to treat any symptom.  I am just helping people to learn.