advice please

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Mon, December 08, 2008

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Again I follow what my doctor wants me to do, go to a Rheumatologist and see a phychiatrist. So i wait 3 months for the phychiatrist and ofcourse what a joke. Waste of time and energy. The Rheumatologist took 2 months to get back to me. Only to find out that dr.s nurse left post it notes all the time telling her to call me. So she wants to try some injections in my fingers, after prednisone not working. Did not tell me what kind of injections. Who even know's how many times I have been on prednisone. It will help for maybe a month with my knuckels getting stuck, fingers in bent position. The numbness from fingers to elbow's. Yes, I was told at one time it was carpel tunnel, but of course my insurance would not cover the EMG.

Every 4-6 months I get this pain in my stomach, and it last's 2 weeks- 1 month, or so. It feels like im getting poked from a needle inside, very sharp and eating makes it worse. 2 nights ago I woke up in the middle of the night with severe pain, I had to go into fetal position, by the time I could move to get to the bathroom all I could do is cry, and pretty much spent the night in the bathroom.

I was sent to a surgeon and he wants to do a laprascopy, upper endoscopy, and a colonoscopy. Since my c-section in 2005 I have had 2 laprascopy and had lesions cut from scar tissue.

I am not able to just stop taking my meds, 8 hours b4 surgery for one and I don't think I need all the procedures done. I think I would rather live with the pain, than go threw all those procudures. It does'nt help that I have allready had 2 laprascopy's and kinda makes me think why would it help this time if not the last 2 times.

Im very confused and feel rushed into these procedures.

I have to get a sitter, get a driver and have someone to watch my little one while im recovering. This is gonna be hard to do, since everybody works and don't have family that lives by me. thier allready calling to set up a date and I don't want to answer my phone, since I don't agree with what they want to do and even if I did, I have nobody to help.

I was told I had IBS, but since zelnorm is no longer available, the stomach pain is always there, along with all the other IBS issues.

They don't want to look further into anything, but to throw me into surgery.

Does anybody have any helpfull information or advise for me???

This issue has stressed me out and now made my pain level go up, Im just fed up with

the medical profession and feel overwhelmed with doctors opinions and decisions.

And ofcourse the medical profession does not believe in Fibro, so us ppl in chronic pain are thrown from doctor to doctor.

How dicouraging it is to go to yet another appointment when you know what is gonna happen. Im so fed up with being treated like a criminal for having chronic pain, Fibro, arthritis and back injury.

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Anonymous

12/11/08 7:19am

The symptoms you have talked about are very familiar to me. I don't know what kind of prescription coverage you have, but I am on Medicare and I had to change meds, twice now. I take Bentyl now (Dicyclomine) and it does the trick. Every medicine works different on different people, but Bentyl works for me. You will need a prescription so talk to your Family Doctor about it. Also try to eat a diet with high fiber or take a once daily fiber treatment. I take alot of meds that can and do constipate me. After being hospitalized for IBD & IBS due to being toxic from the constipation, I try to include alot of leafy green veggies. If I get too constipated, I take a generic fiber drink and usually get relief within a day.

I hope you get help to get these tests done. It may be nothing, but why take that chance.

tobii2025

12/11/08 7:52am

As I was reading your story it all sounded so familliar. I don't have an answer, I can just tell you I'm going through the same thing. Every Dr has a different idea. Some days I just want to give up on Drs and well meaning people, cover my head with a pillow and hope it's all over soon. I am so sorry. Sometimes I think the confusion and BS is worse than the pain. Good luck My blessings are with you!

12/17/08 5:10am

Boy that is a big 10/4.I sometimes have 3 or 4 doc appt in a week and I know without even thinking about it that nothing is going to come of it.But if I don't show up every month for my pain mang I won't get those meds.And if I brush off my psychiatrist,I won't get my sleeping pills.See how good they work.I have not been asleep in 3 nights and it it already 5 a.m.Take care and keep it between the ditches.JO

cherie

12/11/08 11:54am

I know how much you are suffering. I spent 20 plus years without being diagnosed. Finally diagnosed with Fibro, cervical arthritis and herniated disc and frequent migraines. Then a few years ago I suffered an accident at work and injured my right hand which led to CRPS (chronic regional pain syndrome).

Of course there is nothing that can be done.

However, for some of the problems I have found some relief. For the constipation I take stool softeners every day and also Activia. I never really cared for yogurt but was willing to try anything. Believe it or not it works. Takes about 2 weeks but with the softeners it does work well.

Also you must handle your stress. I know easy to say. But get a relaxation tape and make the time to lie down and listen to it. It helps the breathing which helps the body to relax. It is important.

It also sounds like some of your problems are nerve related. It is very difficult to treat nerve problems. You can ask your doctor for Lyrica ... it seems to help some people with fibro and nerve problems.

For your hands get a hot wax bath. They're not very expensive and do help to relieve some of the pain and stiffness.

The most important thing to remember is that no one knows your body better than you! Most doctors have never felt what we feel. Do not let anyone make you feel less of a person, or that you are making more of it than it is.

You know what is real. You have to do a lot of research yourself, the internet is good for that, and you have to make yourself heard. Do not let them talk you into doing what you are not comfortable with. We all have a little voice inside and it never leads us astray. It is the voice that tells us something is definitely wrong, even when the professionals tell us it's nothing. So let your voice tell you what is the right thing to do.

good luck and remember you are not alone!

Cyndi

12/11/08 11:59am

Dear Arlene,

I don't think it would hurt to have a laperscopy done as I had to have one done after a hysterectomy..Come to find out my ovary on the left side had cyst on the inside eating up my ovary. I know it a pain in the tummy but you should have it checked out. Also as we get older your supposed to have a colonscopy done every so often. More high tech than when I had mine done 95( Diverticulititis) need to eat lots of fiber..I don't & should but I do eat alot of salads and sometimes real fruit.I was seeing a Rheumatologist, in fact 3 so far but because the need for a stronger pain med which here in Fla. they can only write up to vicoden then you have to go to chronic pain mgmt. but seeing that you are seeing one have him do some x-rays of your hands. I didn't know but have the same symtoms as you I have Rheumatoid in the hands & feet.

Best of Luck,

Cyndi

Anonymous

12/11/08 12:30pm

I just wanted to add my 2 cents to your problem regarding the pain you have in your stomach. I went throught the same thing and it was determined that it was my divaticulitis and was put on antibiotics. This did not work and the pain was so bad that I went to emergency and was admitted. I spent 3 days in the hospital on IV with more powerful antibiotics. I did have a MRI and it showed a flair in my divaticulitis, but the surgeon could not understand why I was in so much pain as the results for a normal person should have been cleared up with oral medication. He scheduled me for surgery which I cancelled when I was released. Don't rush into surgery until they can prove without a doubt what the problem was. I have been fine since. I also have Fibro and it causes so many problems. I have had problems with my lungs and I don't smoke, pain in my nerve endings for which I take Nurotin and it has helped. It also helps with depression whether caused from chronic pain or depression. I see a psych. counselor twice a month since I suffer from depression anxiety and panic. The fibro makes it worse.

Denise Coleman

12/11/08 12:46pm

I wouldn't begin to try to tell you why you are having these pains and sensations, but I will suggest some ideas for how to get some good medical care and some alternative therapies you might consider. I have lived with chronic pain for over 40 years, and for many of those I dealt with doctors who either didn't believe I had pain, that is was as bad as it was, or else treated me like I was just looking for drugs, none of which was true and I was on a constant search for a good doctor, both medically and personally able to care for someone in constant pain.

I did have a spinal condition that was diagnosed years after I began to have pain and have had four surgeries, the last was a double fusion in 1994. In 1997 I was also diagnosed with Multiple Sclerosis, which added to the pain and limited mobility I was experiencing.

I don't think you should ever stay with a doctor that you feel treats you "like a criminal" or doesn't listen to or work with you appropriately. Did the doctor who sent you to a rheumatologist say that is what you had? Do you have any diagnosis? Have you seen a neurologist? Maybe you should see one and ask him or her for a recommendation on the type of doctor that can best help you.

If you are living with constant pain, however, I strongly suggest you see a pain specialist. Most major hospitals now have pain management centers that specialize in treating people with chronic pain, and if they are good they will have a mind/body approach to pain management and seek the most appropriate medical treatment while also recommending alternative treatments that might help you, such as physical therapy, meditation or accupuncture, for example.

I hope you will be able to find a psychotherapist that you feel comfortable working with, and someone who has experience working with people in pain would be preferable in my opinion. This does not mean that you have mental problems or your pain is in your head, but living in pain every day causes a great deal of stress and puts a lot of pressure on us, especially since family and friends usually cannot really understand what we are experiencing since they have not experienced it themselves. These emotional challenges can cause depression, but also I find it is good to have someone to talk to about how I feel about my pain, and the of reaction to my pain by the people with whom I interact. I have been fortunate to work with a good therapist who has helped me accept my physical limitations and the changes I have had to make in my life as a result of pain and MS, but also she has helped me interact better with my family, friends and the people I meet while out on my scooter. I would suggest you get a reference from a pain doctor for a therapist who understands pain.

I apologize for this long email but I was touched by the emotion I felt coming from your posting and wanted to respond as best I can. As indicated in the comments to your post, many people have shared your experience in regards to finding a doctor who is able to help you, which is a strong indication that medical schools really should require Medical Residents of all specialties to learn about they physiology and treatment of pain. Currently most doctors know pain as a result of an illness or injury, but don't consider it part of the illness or worry about how best to treat it. It has been only recently that pain management has been a specialty, but all doctors need to understand what their patients are experiencing, at least enough to know how to treat it.

Good luck to you. I hope you find doctors who can help you; don't give up, they are out there.

Anne

12/11/08 10:31pm

I think you need to go to a clinic to get a complete work up, you need to surround yourself where there are a bevy of specialists at your fingertips, all working to decide what it is you exactly have, and how to fix the problem.

My mother went 6 yrs undiagnosed for Mitral Valve Prolapse, because she was going from doctor to doctor all the time.....She finally went to .

The Clevland Clinic, in Clevland, Ohio....in about two months they diagnosed her.

I definitly think you need specialists to help you, and a Clinic is the best and fastest way to diagnose someone who has been misdiagnosed or not treated properly by general physicians..

I hope this helps!

12/12/08 4:32am

GOD BLESS YOU DARLIN.I AM SO EXHAUSTED MY HEAD KEEPS HITTING THE COMPUTER I CANNOT STAY AWAKE.I THINK I MIGHT BE HAVING SURGERY FOR MY CHRISTMAS WILL WRITE SOON NEED SOME SLEEP...jO

1stRed

12/12/08 12:16pm

I am used to frequent belly aches due to diverticulosis and as luck would have it my family Dr. at the time sent me to see his father who just happens to be a surgeon.

The advice I got from him was that when the attack starts I should start on a liquid diet use a heavy duty laxative such as Magnesium citrate ( Which I already knew ) and to help evacuate the solids and soothe the innerds take mineral oil which is by far the best advice I think I have ever recieved from a member of the medical community.

You may want to check with your Dr. first although with my condition it works wonders and after a little while you even get used to the taste.

I have changed Dr.s as I am one of the fortunate people on this earth to have multiple painfull conditions and the only thing that Dr. would do for me was to inform me "I was going to live a long painfull life and get used to it" and as the years roll by I'm begining to think the _ _ _ was right!

Check this out it may at least help with the belly aches any way best of luck and speaking from experence I'm afraid youll need it.

COmtnmama

12/12/08 2:26pm

Okay, don't laugh....but I never realized how much internal trouble and pain was due to milk, cheese, yogurt, sour cream, etc. Many foods can also increase inflammation and pain, like eggs, bacon, tomatoes. I can't even use lactose free milk, I switched to Almond Breeze and love it. I also add Bob's Red Mill Ground Flaxseed Meal to my breakfast cereal, it really helps with constipation. Good luck! Christine

Shep

12/12/08 8:27pm

I took Zelnorm once upon a time, also. It did help, but I read about the side effects after four months and stopped it. I have tried Activia among many other things, but the absolute best I use now is MiraLax. It is stirred in a beverage and cannot be tasted even in coke or water when stirred well. I use it about every other day or so, and it does keep me regulated. I have the problems partly due to the meds I am on for psoriatic arthritis and partly because I have had constipation problems my entire life, hence IBS.

Hang in there, and think of your beautiful children and how you want to be around to watch them grow up! My daughter will graduate pharmacy school in a little over a year, and I am thankful every day for her and her achievements/successes! Just try to be positive that a cure will be found for your illnesses. As Scarlet said, "Tomorrow is another day."

12/14/08 10:42pm

Dear Shep this is for you.The doctors or people who know the most about medications and how they effect the body are anesthesiologist,pharmacist,and pyschiatrist.We have 2 pharmacist in our family.In fact my mother and her sister my aunt worked in their brothers pharmacy for about 30 years.And they learned so much just by osmosis.You will be set once your daughter gets her license.Man that is better than having a doctor in the family.So very soon as my mother did she started bringing home samples.And we found out early on what worked and what did not.If you think about it.A psychiatrist must know how any kind of rx affect people.And an anesthesiologist also studies basically medications and how they effect a person during surgery.And last but not least your own pharmacist.Tell me what has she studied.Bingo,I bet a lot about rx.And I loved your Gone With the Wind at the end.I think some days I pray not to wake up to my cramping b.m.'s.But I have worked on that recipe for a lot of years and I have learned what works best for me and no matter how good it works.I still have cramps.I also have IBS.But when I was young it was constant diahrrea.Then we all know pain meds constipate you.I never knew what a normal b.m. was.I usually had diahrrea 4 or 5 times a day.That was probably what kept me so skinny all my life.Now I am fat.And yes I did just have a thorough colonoscopy and endoscopy.And yep you guessed it.Not one thing wrong.No colitis or anything.Clean as a whisle.So why does my stomach hurt.I bet all of us on this site could probably diagnose each other better than the doctors we see who tell us it is all in our heads.So yeah,tomorrow is another day Scarlett...Jo...PS...after my procedures I was told to try using something Metamusil came out with.I use the generic now so I couldn't tell you the Brand name but it does dissolve clear and they say you can even bake or cook with it.I think it helps too .But never do I think that I will wake up some morning and go to the bathroom without the cold sweats and chills from the cramping.I think I got a defective body.A lemon.Haha...they say laughter is the best medicine.Jo

Shep

12/14/08 10:56pm

Jo, I know what you mean by the pharmacists knowing things medical. My daughter is going into it because her father's(my husband) brother, 2 sisters, and one sister-in-law are all pharmacists. She has grown up hearing drugs discussed at family functions, and she has worked in my brother-in-law's pharmacy since she was in 8th grade. She is coming home from pharmacy school tomorrow and will be living at home for the next 1 and 1/2 years while she is doing rotations/internships in this area. She will also give me once a week B12 shots instead of my once a month shot. Maybe I will have more energy than the little I have now. The holiday season always takes more energy than I have; I'm sure you know about that, too.

Happy holidays to you and everyone else on this site!

Shep

12/15/08 3:35am

WOW WE REALLY DO HAVE A LOT IN COMMON.YOU HAVE EVEN MORE PHARMACIST IN YOUR FAMILY.YOU KNOW SOMETIMES IT KIND OF WORKS OUT THAT WAY..STARTING WITH COUSINS WE HAVE 6 THAT ARE POLICE.AND WE HAVE ABOUT 7 OE 8 HAIRDRESSERS.THEN I STARTED OUT BEING A HAIRDRESSER WENT ON TO WORK AS A DISPATHCHER AND FINALLY WORKED AT MAYO CLINIC.THEN AS MY DAUGHTERS STARTED WORKING I HAVE ONE WHO IS A NURSE AND ONE WHO IS A RADIOLOGY TECH.AND THEY BOTH WORK FOR MAYO AS WELL.I WAS WORKING AT MAYO WHEN I BECAME DISABLED.YOU KNOW IT IS A KIND OF SOCIETY ASSUMPTION THAT THE WORD'DRUGS'MEANS SOMETHING ILLEGAL.THEY PICTURE SOMEONE WITH A RUBBER HOSE,SPOON,AND THEN WHAT EVER THEY DO TO MAKE IT BUBBLE IN THE SPOON AND I THINK THAT IS WHY SOCIETY IS HUNG UP ON THAT MISCONCEPTION.ALSO THE WORD NARCOTIC ALSO HAS ABOUT THE SAME EFFECT.I MEAN WE HAVE A NARCOTICS DEVISION AT THE POLICE DEPT. RIGHT.SOCIETY NEEDS TO BE REQUIRED TO ATTEND CONTINUED EDUCATION.AND MOST DEF THE MEDICAL PROFESSION NEED IT MORE THAN ANYBODY.THEY WENT TO MEDICAL SCHOOL ATLEAST 20 YEARS AGO WHEN THESE CHRONIC PAIN PROBLEMS DIDN'T EXIST AT THAT TIME.I WAS TOLD THAT DOCTORS WERE GIVEN OUT OF THEIR 12 YEARS OF COLLEGE A TOTAL OF 8 HOURS TRAINING TO TREAT CHRONIC PAIN.I AM NOT SURE IF YOU ARE FAMILIAR TO THE AMERICANPAINFOUNDATION.THEY HAVE PEOPLE WHO ARE IN CONGRESS TRYING TO GET LAWS PASSED TO REQUIRE DOCTORS HAVE TO GET EXTENSIVE TRAINING IN THESE AREAS.THERE WAS A BILL PASSED IN CONGRESS THAT WENT OUR WAY.I CANNOT REMEMBER WHICH MONTH THAT I READ THIS.BUT WHAT I DID WAS JOIN TO GET A LETTER MONTHLY.AND IT HAS SO MUCH INFORMATION IN IT.IT ALSO HAS A GREAT DEAL OF OTHER SITES EXAMPLE FOR THE VETS WHO ARE LIVING IN CHRONIC PAIN FROM INJURIES OR NERVE DAMAGE.THEY WERE BASICALLY PUT INTO PLACES THAT CAN HARDLY QUALIFY AS EVEN HUMANE.I TRY TO KEEP THE MONTHLY NEWSLETTERS BECAUSE THEY ARE CONTINUALLY ADDRESSING DIFFERENT PROBLEMS.SO ONE MONTH THEY TAPED A HOW ON CNN ON A MOTHER /DAUGHTER WHO BOTH HAD FIBROMYALGIA.IT HAD A VIDEO THAT YOU JUST CLICKED ON AND THE INTERVIEW STARTED.THE DAUGHTER WAS 15 AND THE MOTHER IN HER MID 30'S.THE DAUGHTER TALKED ABOUT HOW SHE WAS TREATED BY FRIENDS AT SCHOOL.THEY ACCUSED HER OF FAKING IT SO THAT SHE WOULD NOT HAVE TO GO TO SCHOOL.THE DOCTORS TOLD HER IT WAS GROWING PAINS(YOU REMEMBER HEARING THAT I AM SURE WHEN YOU THINK BACK ON IT THAT YOU MAY HAVE BEEN TOLD THAT VERY SAME THING.THE DAUGHTER HAD TO EVENTUALLY QUIT SCHOOL AS SHE HAD CHRONIC FATIGUE AND THE CONSTANT CRUEL REMARKS CONTINUED EVEN BY DOCTORS SHE SAW.AS THE MOTHER WAS WELL INTO HER FIBRO-SHE KNEW RIGHT AWAY THAT HER DAUGHTER WAS NOT DOING ANY OF THESE THINGS FOR ATTENTION.BECAUSE SHE HAD THE VERY SAME SYMPTONS.IF YOU WOULD LIKE IF I CAN FIND IT IN MY COMPUTER.HOPEFULLY I DID NOT DELETE IT.IF YOU HAVE AN EMAIL ADDRESS I WOULD BE MORE THAN HAPPY TO SEND IT TO YOU.WELL THAT IS ALL I CAN THINK OF RIGHT NOW.IT IS ABOUT 3:30 IN THE A.M. AND SOMETIMES WHEN MY SLEEP APNEA JUST WONT LET ME SLEEP I TRY AND WORK ON DOING RESEARCH TO TRY AND FIND MY WAY BACK TO NORMAL.AND THAT IS WHAT I THINK WE NEED.I THINK WE NEED TO BE VALIDATED.BECAUSE WE DONT LOOK SICK.I HAVE ACTUALLY HAD PEOPLE YELL AT ME FOR PARKING IN A HANDICAPPED PLACE AND I HAD A LEGITIMATE DISABLED STICKER I STILL HAD PEOPLE THAT WOULD DRIVE BY IN CARS AND CALL ME A FAKE.THE WORST PART OF THIS DISEASE IS THE MENTAL ISSUE.BECAUSE THE MORE DEPRESSED YOU GET.THE MORE YOUR PAIN INCREASES.I WOULD LIKE TO CONTINUE TALKING TO YOU IF YOU WOULD LIKE THAT TOO..IT SEEMS LIKE I GET MORE COMPASSION FROM STRANGERS AND AQUAINTENCES THAN MY FAMILY AND CLOSE FRIENDS.LET ME KNOW AND MY EMAIL ADDRESS IS BOBBLDG@COMCAST.NET.OR DO IT THIS WAY BOBBLDGATCOMCASTDOTNET.SOMETIMES THEY BLOCK SO I JUST DID IT BOTH WAYS.JO

MariaElena

12/13/08 1:40pm

Sorry to hear about your dilema. I too am at this place. I'm not sure what to do. I take one day at a time. I'm not on anything but allergy medicine and tylenol. I have days of things happening in my body that I dont understand. I have seen a rheumotoid doctor too. He did diagnose me with fibro. Gave me sleep aid and antidepressant. I have side effects from the two. They have checked my blood, nothing and thyroid. I know some it is from menopause. I have TMJ too and plantar fiscila in both feet, IBS, and musclar pain. It just goes on and on. Im frustrated. Changed doctors thinking that might be the answer and he thinks its only allergies and trying to work with me. I decided that maybe I do need to take antidepressant and see if from chemical imbalance with menopause, that has led to fibro symptons but I'm still praying about it because meds make me feel weird. Its really scary at times but I look to the Lord and my quiet times and walk with Him to sustain me and know that He knows where I am at in time of my life and is going to help somehow. We are in a fallen world and our bodies just start breaking down. God be with you and look to Him to guide you....My heart goes out to you and may you know your not alone.... it says in the Bible that their are others who are going through this suffering too and look to the future with the Lord and glory that awaits us but we still can cry out to Him because He is our healer. So bless you and keep you and remember His grace is sufficient........ Merry Christmas and Happy New year 2009 Love, Maryhelen Reyes

Madeline

12/14/08 6:33pm

Dear Arlene,

I feel for your dilemma.

First get a new Dr, if possible go to a hospital/clinic that will test you to determine what (if anything) needs fixing, specially if surgery is involved.

While you find the right place to go, review your diet eliminating everything and anything that can contribute to any kind of abdominal ails, and everything that is not fresh and alive (meaning go back to basics, no preservatives, no artificial ingredients, no processed foods). Flax seed/meal is wonderful for improved bowel movements. Star anise and chamomille are great for soothing stomach problems and anti-spasmodic (use in tea, I make a batch, keep refrigerated and drink as water).

Shelter yourself as much as possible from chemicals (this includes cleaning supplies, specially those with strong odors).

Enemas should be used with caution, and avoided if the cause of pain is unknown.

I hope you find relief soon. Keep searching and praying. You'll be in my prayers.

Best wishes,

Madeline

12/14/08 8:39pm

I really try to look at this site as much as possible as much for others as myself.I have been having a pain in my right side for a year as of Dec 15th.I went to the E.R.They did ultrasound,bloodwork,and of course there is that cold hard table without a pillow or anything else.And you look at who brought you getting so tired of waiting as you are.But atleast I do have a good husband.And what have they found out about my stomach.Nada.I had a colonoscopy and endoscopy this past March.I could hardly put if off any longer as this pain that is like a stich in your side when you run too long.(Back when you could run that long) continues to haunt me.I tried all advice given.I tried drinking lactose free milk.I have tried almost everything I can.Nothing shows up on any test.I also wanted to know if anyone has this problem.I have times when I wake up in the morning and my stomach is basically normal.Really bummed out about that since I have never weighed this much in my life.Even giving birth.But my stomach can literally go from flat to looking like I am 8 months pregnant.And it is hard and distended.My daughter the nurse and I were talking and she said mom I have literally sat here and watched your stomach grow in one hour.I said I know.I think I need my gall bladder out.That was my psychiatrist suggestion.And there are lots of times when he is more right about the physical aspect of my health as well as my mental well being.I have known him 18 years.He is so kind and compassionate.I always take him new research I really think he enjoys this.He is busy and doesn't have time to do these things I know.And he was the one who gave me the lonesome sailors website which helped with the research I was doing on my fathers part in ww2.So we just talk as friends.He trust me completely with medications.If I suggest something that is off the wall.He will say well lets give it a little test just to make sure.And I'll be danged if I am usually right.It seems like the medication I take does the opposite of what it is supposed to do.Has anyone had that happen.Also I asked Karen for a list of infectious disease doctors at Shands Jax.I lost it and can't even get back to where I saved it.I must have messed up.So if anyone is having sleep apnea like me and feel like it I sure could use the list of Infectious Disease doctors at Shands Jax.You have my deepest sympathy.I know what it is like to not have validation.We are all called drug seekers just because they cannot find the problem.Then when it is left to chance,it usually is too late by then.And there you go.You have another chronic pain issue to deal with.Love,prayers,hope and joy be in your hearts is my wish to all.Jo

Madeline

12/14/08 9:38pm

Hello Jo,

I did a Google search for the Infectious Diseases Doctors at Shands Jax (as stated in your reply) and I hope I found what you're looking for. Their link is as follows:

http://jax.shands.org/hs/infectious-disease/physician.asp

They reference the University of Florida, apparently this is part of the University.

Good Luck, Best Wishes and Very Happy Holidays (even if they're quiet).

At least you and I are blessed with good husband's and that is quite a support system.

Blessings,

Madeline

12/14/08 10:12pm

Thanks Medeline you are a doll.Computers get so complicated when they keep adding more and more to learn.I thank you so much.Yes...indeed I think God has blessed us with good husbands.And there are so many women who do not have that at all.Without any support systems at all.I wonder how they get through each day.Yes there is always someone who is worse off than we are.I think today I made a turn in the road.I feel like I can finally exhale.I have been so scared that this osteomyelitis is nothing to fool around with along with staph and yeast all in my mouth.But it took me 2 years to get a doctor to admit it.And actually write it down.Why do you think that is.Why even though it was of no fault of their own.That it started actually almost 11 years ago.I could not find one doctor who would back me up.And it took me from last March to keep finding a second and third opinion.This oral surgeon actually had the audasity to look at the puss running out of the implant and smile and say it just looks so great.I just could not believe we paid 15 thousand dollars for him to put my health into serious jeapardy.So I have little or no money to buy my 3 kids,7 grandchildren,any Christmas presents at all.Little children do not understand. The older ones understand.But little kids who still believe in Santa Claus should be allowed to have a childhood as long as they possibly can.I do have a first grand daughter 21,expecting her first baby making me a great grandmother.I was 36 when she was born.We are so close.I was able to be a young and healthy nanny if you know what I mean.But I have a new grandson 3 months old.I will be 58 in Jan.And it just breaks my heart that I cannot be that bouncy bubbly person for him.It just seems so unfair to them.Ok I will get off the pity party and just do what I should have and that is to thank you so much.With all my heart.Have some great holidays.I still believe in Santa too.And when you do that you still have hope.Thanks again...Jo

Madeline

12/14/08 10:32pm

Jo,

You are welcomed.

Love is a universal language, your kids and grandkids understand and perceive your love for them even when you cannot physically involve in acts that conventionally have been equated to an act of love. A broad smile, a tender voice and a twinkle in your eyes will speak volumes.

Blessings,

Madeline

12/14/08 11:17pm

You are so right again.I tend to over do.By that I mean I have been told I try to over explain too much.I guess it is just my personality.But I have had some new blessings because of it.I guess no one wanting to be around me,as I have burned them out I guess.But my sister-in-law invited us to Thanksgiving this year.She totally accepts me and never judges me.She and my husband were adopted.But not from the same biological parents.They had no one else but their mother and each other.My family T-Days were about 40 or 50 people and that is just my mothers side of the family.My father was the only person in my immediate family who gave me my self esteem and to treat people with the same kindness I would like to be treated with.Well Daddy being from a family of 15 children had no life with his family.They were all born in Bridgeport Nebraska.So when they grew up and married they scattered.from Hawaii to N.Dakota,AZ,Colorado,California,Boston.I saw my paternal grandmother only 4 times in my whole life.We were just so poor we could not afford vacations to visit his own brothers and sisters so he just embraced my mothers family of 5 including mom.As they all live in one city.Jax Fl.I always felt so much love from my father and he had more integrity than any one until I met my husband.Well my daddy died 12 days before Bob and I were married.Thanksgiving was his day.It was always at our house until he died at 59 years old.And his father died when he was 59.I will be 58 soon.So you get where I am leading you.I dont know if I will take after the women in our family who seem to have longevity.I still get letters from my fathers 96 year older sister who is healthier than both of us.But I need to tell you my point.When Bob's sister knew we were coming over for Thanksgiving.She was estatic.Finally found a wonderful man who appreciated her.She had a son who comitted suicide at age 13 and at that time her daughter has been on drugs and has already given up 2 babies.And Libby(my sister-in-law)got to keep this third baby her daughter had and to keep.I never judged Celeste for being on drugs and having babies she had to give away.But by my family shunning me we went to his sisters.And you would have thought we were royalty.So maybe God has been putting me exactly where he wants me to be.I always felt so sorry for Libby.She was actually a teacher for emotionaly disturbed children.So you can imagine how it made her feel that she could not help her own son who shot himself on a bus coming back from visiting his father.So now Libby was in hog heaven because now she is the center.Now she feels needed.I need her.She took me to 2 of my doc appts until school started and we had the best time.Sure she was taking me to medical things but my point is that we didn't talk about that.We talked about funny stories of the past and we had the greatest time.So I told her I feel so at home around you.I just find she doesn't judge me.And I do not judge her daughter.I love her.Not many people will say anything kind about Celeste.But she loves me to death.She always hugs me tight and I crave affection.I am a person who hugs and kisses all the little kids and they are screaming loudly from joy hey mom Aunt Jo and Uncle Bob are coming in right now.That made me feel so wonderful.So I know I need to let go and let God.God Bless you for listening to my long emails.Let me know if you need me.I will be there for you.Always...Jo

Madeline

12/15/08 1:08pm

Happiness is a choice. And you obviously have made that choice, since you appreciate the good in your life. Everybody has good and bad things happen, its what you make of them, or better yet what you choose to make of them. You engorge in the pleasure of the good things and savour them, that's the way to go. Congratulations on your choice, may God be always with you and may you always rise above the negative things in life and continue to appreciate the good.

God Bless,

Madeline

12/16/08 12:05am

I AGREE 100%.I AM LOOKING AT MY NEW GRAND BABY AND HAPPY KNOWING I HAVE A ROOF OVER MY HEAD AND A WONDERFUL HUSBAND.I HAVE SO MANY BLESSIGS.I REFUSE TO LET THE BAD THINGS BRING ME DOWN AND I ACTUALLY HAVE SPENT THE BETTER PART OF THE DAY TELLING CERTAIN PEOPLE THAT I AM NOT HAVING A PITY PARTY FOR MYSELF.I HAVE JUST STARTED TO ADVOCATE FOR MYSELF SO I CAN GET HEALTHIER AND LIVE WHAT EVER LIFE GOD HAS GIVEN TO ME.WHETHER IT BE ONE YEAR OR 25 YEARS.I AM NOT TAKING BULL FROM ANYONE ANYMORE.I WAS ALWAYS THE LITTLE QUIET MOUSE WHO LET PEOPLE HURT MY FEELINGS AND EVEN THOUGH THEY DID I COULD NEVER HURT THEIRS BACK.I DO NOT THINK LIKE THAT.I WAS RAISED TO TREAT EVERYBODY HOW I WOULD LIKE TO BE TREATED AND IF YOU DONT HAVE ANYTHING NICE TO SAY TO PEOPLE THEN DO NOT SAY ANYTHING AT ALL.I DO MISS MY CHURCH.I LAST DID 14 STRAIGHT YEARS AS A DEACONESS.I MADE SURE ALL 3 OF MY DAUGHTERS WERE BROUGHT UP THAT WAY TOO.BUT WHEN I GOT THIS DISABLED I CANNOT EVEN SIT IN THE PEW WITH THE 3 PILLOWS AND THE LITTLE STEP STOOL I BROUGHT TO HELP ME ENDURE JUST THAT ONE HOUR.I AM A DEEPLY COMMITED CHRISTIAN.THAT IS WHY I GUESS IT WAS SO HARD FOR ME TO PUT ON THE BRAKES AND TELL OTHERS I AM TIRED OF BEING TREATED BADLY AND IT IS NOT GOING TO CONTINUE.I FEEL MUCH BETTER NOW THAT I DID.I AM WISHING YOU A JOYFUL CHRISTMAS.GOD BLESS YOU AND WATCH OVER YOU.JO

Madeline

12/16/08 3:53pm

It is perfectly appropriate to tell people off, so long as you address the specific act they commited which was cruel and let them know that it is not acceptable. Just don't blow off the handle, if you do they will have the upper hand and you come out as a fool. I have personally taken pleasure looking into someone's eyes (of those who have deliberately or ignorantly been cruel) when I tell them how inappropriate and hurtful their comment was. And just when they feel as tall as an ant, I courteously give'm a sincere farewell.

But for the rest of the loving world I can make a fool of myself and laugh with them at myself, without a problem.

Be well,

Madeline

12/17/08 4:25am

Well my advocating for myself backfired on me.I was told I was being hurtful,vendictive,and saying the meanest things I could think of.I ended my letter by saying I am not going to let people continue to kick me when I am down.And she had the gaul to tell me that I do nothing to help myself.I talked constantly about you chronicpainconnection.I said well you know when the only friends and family you have left start talking to you with disrespect.Then I think I have the right to say something.I have been telling Bob not to let my kids have a lecture from him as it only makes things worse.Madeline this is getting so screwed up.Bonnie who used to treat me badly is now saying she has noticed how unhappy Amy acts.She doesn't speak to anyone.I said yes I did notice that.But I cannot tell her about Amy now saying unkind things because it is just going to get out of control,Which is exactly what Amy said I have done.That I made a big deal out to something she did in the past I said uh uh.I guess I am getting tag teamed.It got so rough I had to call my mother on the phone she lives in Panama City.I sounded like that girl on The Exorcism of Emily Rose,I just cried that hard to my mother.Who ended up telling me she was in pain and could not hold the phone any more.And I know that she does live in chronic pain and she is 80 in a few days so I just said mom just hang up the phone.It really won't hurt my feelings I know I go on and on.That is my personality.But my husband and mother in trying to do what they think will make things better.It makes things worse.I said I have been trying to get a doc to actually admit I have ostomyelitis.For 11 years.My oldest friend has worked for an oral surgeon for over 35 years and she said these doctors are going to end up letting you die.We have known each other since we were 3 and 2 years old.But I have to believe that someone who never judges me and has lost her daughter,husband fall off the roof and has had several surgeries on his foot that less face it he may loose that foot.She had been told there was a cyst of some kind on her thyroid.And all my support people I have lost in the last 2 years.One died at 61.The other person I really had such a good repoir with has been left by her husband and has withdrawn from society and I have had her birthday present to give her for 3 years.I have no one to talk to.Or to help me.If you do not get that diagnosis written down how may then can you get treatment for it.Well goodness sakes it is four in the morning and I have not slept in 3 days so I better go.But thank you so much for your friendship and just listening.People have the misconception that we are trying to make them feel like we expect them to solv our problems when all we need is someon to just listen with a kindness for us.We know they cannot change things.I forget when I cannot go back and see what you have written when you just directly email someone but I am in prayer for all who arer suffering in pain Have a good dream night...Jo

swirlgirl

12/17/08 10:38am

I've had FM all my life and I really do understand your frustration. We've been called hypochondriacs, mental, lazy, crazy and "unmotivated" - which is all BS. I'd suggest seeing a Nuerologist and trying Nexium (if you can afford it). Please believe that there are people who take you seriously but it takes a lot of effort to find them I once had to be rejected by 25 doctors who thought my case was "too complicated" or "too much work" and it really hurt. I, too, am tired of being considered criminal for being sick. When people act like that, like my entire family, I tell them that without "sick" people the entire medical, pharmaceutical and alternative med industries would disappear. I support a team of health workers and deserve the credit for wading through a system that seems to wish I'd just go away. Preserve your dignity, believe in yourself and take no prisoners when it comes to demanding adequate health care and for your symptoms to be taken seriously. Don't be afraid to be rude - politeness can kill you. We are not bad people getting good, we are sick people whose only hope at this time is to "manage" our pain and the prayer that someone will stick around to care for us. We are here to teach compassion, patience and increase understanding to those lucky enough to be healthy. Ill health can humble the most arrogant of people and it doesn't hurt to remind them that you are a human being, as equal and deserving as they are and they have no right to tell you "it's all in your head". Whatever Creator made you - it was for a reason, and you deserve to live the best you can and you belong here as much as anyone else. You have a perspective on life they can't imagine.and deserve all the help "the healthy" can offer. Their reward is compassion, insight and someone to help them get through their hard times as everyone gets sick or weak eventually.

Tiggy

1/25/09 7:43pm

Have you tried getting in touch with the National Pain Foundation? They might be able to help you with the fibro pain and help you find a doctor. I believe "Fibromyalgia Aware" does the same thing.

I know what it is like to wait months to see a doctor and then they don't have any answers. I have done this so many times that I no longer get my hopes up when I am going to see someone new. SparksPeople.com has online groups for people with fibro as well as other medical problems & fitness groups too. You should check this out, because someone may have the same problem you are having. Just log on & sign up for Fighting Fibro or Fibro Friends. There is a lot of great info shared among everyone that has fibro.

My daughter was much older when I was diagnosed with fibro, so I don't know what it is like to go through this with a young child, but there are others on the website that do have young children. You are going to have to be your own health advocate and try to gain as much knowledge as you can about your condition. Between these two websites you should be able to find a lot of helpful information.

I hope this helps some & hope to see you on Sparks. Try the best you can to relax and forget the doctors for a little while. Do some deep breathing, or just focus on something else entirely.

I like the Chronic Pain Connection website too. I have asked questions from the experts and gotten answers back within 24 hours which is really impressive. I hope things start going a little better for you.

2/ 1/09 1:57pm

YES THE AMF IS GREAT.I KEEP EVERY NEWSLETTER AND SEND AS MANY OUT AS I THINK EACH SPECIFIC PERSON WOULD BE INTERESTED IN.THEY HAVE SO MANY LINKS AND I HOPE THAT THE PEOPLE I SEND THEM TO TAKE THE HINT AND JUST SUBSCRIBE TO IT THEMSELVES.IT DOESN'T COST ANYTHING.AND IT HELPS SO MANY PEOPLE.I DID GET A LOT OF SIGNATURES IN ORDER TO PASS THE LAST BILL IN CONGRESS FOR THE BETTER TREATMENT OF VETS.THOSE WHO ARE AMPUTEES ESPECIALLY TUGGED AT MY HEART.ONE MAN WAS 29 YEARS OLD.HE LOST HIS ARMS AND HE STILL HAD A TODDLER AND WIFE AND THE REST OF HIS LIFE TO GET THROUGH.

THAT IS WHEN I TAKE STOCK OF MY LIFE.I HAVE FOUND MYSELF THINKING AT 58 I DO NOT THINK I CAN LIVE ANOTHER 20 OR SO YEARS IN THIS MUCH PAIN.I HAVE NO ROUTINE.AND IF I DID I DO NOT HAVE THE ADEQUIT STRENGTH OR IN TOO MUCH PAIN TO STICK WITH IT.MY HUSBAND JUST TURNED 50 AND HIS BUSINGESS SUDDENLY HIT ROCK BOTTOM.HE IS A BUILDER.AND THE BUILDING INDUSTRY IS PRETTY SLOW RIGHT NOW.BUT HE HAS BEEN SMART WITH OUR MONEY.EVEN THOUGH I HAVE NAGGED HIM FOR 20 YEARS TO PLEASE BUILD OUR DREAM HOUSE WITH A LAP POOL NOW THAT THE KIDS ARE GROWN AND GONE.A HOUSE THAT IS HOUSE FRIENDLY TO US.HE ALWAYS HAD A SECOND THOUGHT ABOUT THAT.HE SAVED OUR MONEY.

HIS FATHER WAS HIS PARTNER AND HE PASSED AWAY SEVERAL YEARS AGO.BUT THE KNOWLEDGE HE GAVE MY HUSBAND WAS A LIFE LONG EDUCATION.HE TOLD ME NOT TO WORRY.WE HAVE NO CAR PAYMENTS BECAUSE WE DO NOT GET A NEW CAR EVERY FEW YEARS LIKE SOME.WE COULD HAVE LIVED MUCH MORE LUXURIOUS BUT HE HELD BACK.NOW I KNOW WHY.HE WAS THE SMART ONE.OUR MORTGAGE IS UNDER $500 DOLLARS A MONTH.AND WITH MY SOCIAL SECURITY I CAN PAY MY RX.ALTHOUGH IN ALL THE YEARS WE HAVE BEEN MARRIED HE HAS NEVER ASKED ME FOR ONE PENNEY TO PAY ONE BILL.BUT NOW HE IS LOOKING FOR A JOB UNTIL THE ECONOMY PICKS UP.HE IS NOT A LAZY MAN.HE LOOKS EVERYDAY FOR SOMETHING TO MAKE MONEY.BUT SAID WE COULD SURVIVE ANOTHER 5 YEARS IF HE WANTED TO SIT ON HIS BEHIND AND DO NOTHING.AND WE WOULD NOT LOOSE ANYTHING.I GUESS GOD DID ME A BIG FAVOR BY SENDING ME A PENNY PINCHER.HAH

ITS LIKE HE TOLD ME.HAVE I EVER LET YOU WANT FOR ANYTHING IMPORTANT.FOOD WATER ROOF SHELTER CAR? I OFCOURSE SAID NO YOU NEVER HAVE.AND NOW I AM GLAD THAT YOU DID.BUT WE BOTH WISHED THAT OUR LIFE WOULD HAVE TURNED OUT BETTER FINANCIALLY.I GUESS A LOT OF PEOPLE THINK THE SAME.ALL OF OUR FRIENDS OUR AGE HAVE GONE ON ATLEAST ONE CRUISE.I WOULD JUST LIKE TO SPEND THE LAST YEARS OF MY LIFE GETTING SOMETHING FOR ME AND HIM.MAN PLANS AND GOD LAUGHS.ATLEAST I HAVE BOTH MY ARMS.

I THINK WHEN I START TO FEEL DEPRESSED I JUST THINK OF THOSE VETS.MEN WHO WANT TO SUPPORT THEIR FAMILIES.THEY HAVE THEIR DIGNITY AS WELL.IT IS HARD TO STAND UP FOR YOURSELF WHEN YOU HAVE LOST SO MUCH OF YOURSELF.IF THAT MAKES SENSE TO ANYONE.

YESTERDAY WAS MY GRAND DAUGHTERS BABY SHOWER.I KNEW I WOULD HAVE A PANIC ATTACK AT THE LAST MINUTE.BUT I MADE HER A BEAUTIFUL CARD.I TOLD BOB LETS GIVE HER $300 DOLLARS SO THAT SHE CAN BUY WHAT EVER SHE NEEDS OR WANTS FOR THIS BABY.I SET ASIDE MY CLOTHES TO WEAR.BUT HERE I AM WITHOUT TEETH IN MY HEAD.THE SURGERY TOO SOON AGO TO PUT THEM IN YET.AND MY HEART STARTED RACING.I HAD DIAHRREAH ALL NIGHT LONG SO I FELT WEAK.I KNEW IT WOULD HAPPEN.ALTHOUGH MY HUSBAND COMPLAINED OF HAVING A SOUR STOMACH HIMSELF.I NEVER KNOW IF IT IS THE FIBRO OR DID I ACTUALLY CATCH SOMETHING GOING AROUND.I KNEW MY DAUGHTER WOULD BE FREAKING OUT.THAT IS THE WAY SHE GETS.AND IT MAKES ME SO NERVOUS WHEN SHE GETS LIKE THAT.SHE CANT HELP THAT ANY MORE THAN I CAN CONTROL MY PANIC ATTACKS.THANK GOD FOR A HUSBAND WHO COULD HELP HER OUT WITH THE SHOWER.AND I WANTED IT TO BE PERFECT FOR OUR GRAND DAUGHTER.HE TOLD HER NANNY WANTED YOU TO HAVE ALL THAT YOUR HEART DESIRES AND SHE IS SORRY SHE MISSED THE PARTY.HER RESPONCE WAS... THAT IS OK PAPA.I CARRY HER IN MY HEART.

HOW COULD ANYONE NOT THINK THAT CHILD LOVES ME WITH ALL HER HEART.WHAT A BLESSED THING TO SAY.BUT MY HUSBAND TOLD ME I MADE THE WISE CHOICE.HE SAID IT WAS HECTIC AND MY DAUGHTER WAS WIGGIN OUT SO YOU DID THE RIGHT THING FOR JESSICA.AND JUST ONE LAST BIT OF KNOWLEDGE TO SOME OF THE THINGS I HAVE READ.FIBRO IS ON A CELLULAR LEVEL.SO YES IN CAN AFFECT YOUR SIGHT.IT CAN AFFECT ANY PART OF YOUR BODY.MY COUSIN IS 3 YEARS YOUNGER THAN I AM AND ALREADY HAS HAD 2 EYE SURGERIES AND 2 KNEE REPLACEMENTS.THAT IS ON TOP OF THE DAILY WHOLE BODY PAIN.AND SHE UNDERSTANDS ME AND I UNDERSTAND HER.THERE IS NO WHY.IT IS WHAT IT IS.THERE IS NOTHING WE CAN DO ABOUT IT EXCEPT BE THERE FOR EACH OTHER AND PRAY SOME ONE SOON FINDS A CURE.GOD BLESS YOU ALL.JO

Tiggy

2/ 1/09 4:05pm

Hi,

I do belong to Sparks so you can look me up under "Tiggy6209". I have done pretty much everything you described except try the National Pain Foundation (I am a member though) & Fibromyalgia Aware (I subscribe to this too). I think a lot of doctors don't like to treat us because we do know a lot about FM and have done our homework.

Right now I am seeing a physiatrist whose wife has a PT practice in the same office. The doctor did an EMG (another one - but at least he was very gentle) and said I had a pinched nerve in my left shoulder probably related to the surgery I had on my cervical spine last summer. I started PT and the therapist told me the knot about the size of a super ball in my right shoulder that has been there for 10 years had to go so the tissues & fibers could heal. He started trying to break it up an it was pain like you wouldn't believe. I told him I couldn't do that anymore unless the doctor agreed to do a trigger point injection first. I had to have a long conversation with the doctor because he no longer does injections. He said what I told him that the injection would soften the knot made sense and agreed to do it. That felt really good - that he listened to me.

The injection has worn off and the knot hurts & is causing referred pain but the injection did soften the knot. The PT was really suprised yesterday that it was softer, but he doesn't get it that it was the injection, not him. It was kind of great that the doctor respected my opinion (I told him that all the specialists I've seen over the last 10 years do a bunch of tests and then send me back to my PMC. The physiatrist I am seeing know won't manage my meds (I can't find a specialist to do that)), and we have agreed that if the PT doesn't help within a reasonable period of time we will stop. I don't think he will continue treating me if the PT doesn't really help - cause like you said it's too much work & the doctor's aren't trained to know what to do with us.

I am going to stay with the PT for a couple of weeks and see what happens. If it doesn't work, I was really trying to talk myself into just letting my PMC manage the meds and do the best I can on my own. Financially, I can't afford to keep giving my money away to people who don't do anything for me. I find names of doctors that are supposed to be great, and I see them and they don't do anything. Like you said, you wait for months for an appointment (and I don't get my hopes up) and they just take your money and send you away.

I know I have to keep pushing and find a doctor, but sometimes I think I have to heal myself by myself. I have done lots of alternative therapies too and am also seeing a massage therapist who does lymphatic drainage, energy work, guided imagery during massages and is part Indian. Don't worry, I know I have to find a doctor who is really willing to work with me, just maybe need a mental break from doctors for a little while.

Thanks for the e-mail and I hope to see you on Sparks.

advice please

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