I am new to this site.But I wanted to try and see if other people have the same problems that I do and if so what has worked for them.It seems like all I ever do is going to the doctor,lab work,xrays,surgeries,fixing blundered surgeries.I feel alone in this.I know that our family and friends soon tire of hearing our problems every time we talk to them.I think that we burn them out.And I would probably be tired of hearing about it if it were me.I get tired of telling it.I would like to know if other people have been ostrasized for having to take narcotic medications.I have lost an old friend a daughter and a sister because they think I have a drug problem.Not a medical problem.I am very concervative with my meds and I do have a narcotic contract with my pain mang doctor.I am sick to death of people telling me if I would exercise I wouldn't be sick.Even medical personel do not always know the facts.Doctors long ago were not taught how to treat chronic pain.It is difficult to find a new one and spend years earning their trust only to have them move away and then a new doctor wants you to start way back to what you have already endured 20 years ago.I have become so frustrated defending myself constantly.I have lost all the people who were my support group either by death or their inability to be ambulatory.



Jo,
I'm so sorry to hear all that you have been through. Hopfully on this site you will be able to make some new friends. There is plenty of support found here. Let me introduce myself, my name is Morgan. Though I'm only 16, I have had enough medical issues for a lifetime. Let me tell you a little of my history. Last September I woke up with severe back pain. I week went by and by then the pain was in all of my joints. I started to develop horrible migranes. To make the story short I was sent to over 20 different doctors all of wich either misdiagnosed me or told me that there was nothing wrong with me. I went to WVU and John's Hopkins and all of the other doctors in the surrounding areas. Well about a month or two ago I was diagnosed with fibromyalgia, chronic fatigue syndrome, and arthritis. Absolutly nothing has helped me. Believe me I know how it feels to be at the hospital or a doctor's appointment. Well anyway I have multiple health issues. On top of all of that I suffer from acid reflux and other painful digestion problems. I have found that if I focus on the problems that others have and realize how much that God has blessed me. Then it's easy to smile. Try to make some friends that will help you boost your spirits. Oh I forgot to mention this earlier. Have you ever gone to a chiropractor before? They are great. It's painful for me because I'm very sore to be touched is very painful, but its worth every min. After your adjustments your muscles loosen some. As you I have pain in my back. I'm not sure what you are dealing with but, if you go to the chiropractor each adjustment your body builds muscle. The more muscle that you build the more support you back will have, thus your pain will get a degree better. I hope that I can be an encouragement to you! Talk to you soon.
Wishes of good health...
Morgan
Dear Morgan I am suprised that you are so young to have gone through so many things.I too have a lot of stomach issues.And one never knows when that will rear its ugly head.I thank you for your words of encouragement.Yes I did go to a chiropractor for over 20 years,physical therapy 3 times a week for 3 years.What I am facing now fills me with more dread than anything.I have had over 28 oral surgeries.I have been to the brink of death before someone finally used their common sense and put me into the hospital.I was in surgery and on IV antibiotics for 4 days.I asked a night nurse if I could have died and he said yes but could not say so or he would lose his job.That was about 10 years ago.I have had different oral surgeons.I have been bounced back and forth from oral surgery to ears nose and throat specialist.I think that I might have osteomyelitis.I am trying to find out how you find out.I am scheduled for sinus surgery on Sept 25th which is just a few weeks away.And now I have a bad case of bronchitis.I see a doctor Monday about that.But I haven't found anyone who will address the osteomyelitis with me.I can't seem to find anyone who knows too much about it.My primary said that a culture could be done at surgery and then if it is positive I can go to Infectious Disease doctors.I am terrified,The infection runs down the back of my throat and I am constantly nauseaus and have a severe bitter taste in my mouth.I would love to hear any advice or help in any way.I am scared to death that I have infection in the bone and I may loose my jaw.Does anybody know anything about that? Once again thank you Morgan for being so brave so young.A lot of people used to say to me you are too young to be so ill.And I have always said that disease favors no age.Even babies are born into this world with conditons that will cause them pain the rest of their lives.People can be so cruel.Morgan you are a fine young man.Thank you so much for being my first friend.I think we all repeat ourselves in hopes that maybe the other person hasn't tried something.But I think I have just about been to every type of doctor there is.But you were still right to suggest the chiropracor and other things.You just never know who will be your angel of mercy.Keep in touch,Jo
Jo,
I hope that you can find a correct diagnosis very soon. I know how hard it can be when you just don't have the answer. Some relief will come after you find out. There has to be someone, somewhere that has either gone through the same thing that you are going through, or someone who can diagnose your issue. Just don't give up hope! The Lord will NEVER put you through anyhting that you can not handle. God is always fair. I firmly believe that I'm going through my struggles to be a blessing to others. I think that God wants me to be a missionary. I hope that your upcomming appointment goes well. I need to go. Talk to you soon.
Morgan
Oh, by the way...
I'm sorry to have mislead you, but I'm a 16 year old girl. No problem though! lol : )
Dear Morgan I wrote a very long letter to you and I wiped it out.I am new to this and I was set to hit send and I hit the size of the letters to a larger size and it disappeared to somewhere else.I am going to try and remember the things I said.I think I never told you what all my diagnosis were.So here is the list.I have Myofascail Pn Syndrome,Fibro,DJD,IBS,TMJ,dry eyes and dry mouth,8 herniated disc,arthritic knees,spinal stenosis,chronic fatigue,clinical depression,severe sleep apnea,chronic sinusitis,chronic pain in my whole body
Then there are the weird things that happen like I cannot stand the sound a flourescent light makes,unexplained headaches,nausea unknown cause,the shower hitting my skin is painful,sometimes I feel like I am being stung by bees all over my body,I cannot sit in my pew at church anymore even though my pillows and stool are never moved.I can feel the A/C on my neck and that caused real pain.But there was no where to sit that you didn't feel the air hitting your skin.terrible muscle spasms in odd places in my body,restless leg syndrome which I take clonopin for.Clonopin also helps bruxism.That was one of the leading causes of abcessed teeth.I would grind teeth that had already a root canal and crown.About a thousand dollar a tooth.But I actually ground my teeth so hard I broke the crowns.So basically the dentist said I was chewing glass in my sleep.Thus over a ten year period I have lost all of my teeth and the remaining were on their way.I finally gave in to my husbands suggestion to have oral implants put in.So that I would not have to have oral surgery number #29.But that cost us 15 thousand dollars out of our pocket.I went back to the oral surgeon constantly complaining of puss running out of one implant in the front.He said well your implants look fine,I don't see any infection.So being aggravated after a year and a half I took a glove and palpated it around the area and came up with a yellowish substance and I said then what would you call this.He seemed to think it was a sinus infection.Oh yeah I forgot to tell you I have chronic sinusitis.So he said he would send me to an ears nose and throat doctor.The first one was too extreme.The second said he saw no infection.Finally the third had common sense and I am scheduled for surgery Sept.25th.She said the reason no one saw infection on the cat scan is that they have kept you pumped up with just enough antibiotics that it is held at bay.She said she would go in and clean out the infection and close any perforations she sees.A one day surgical procedure.She told me to stop my antibiotics.So that she could get it all out.Now I have bronchitis from the infection draining into my lungs as I sleep.I want to ask her to culture any substance so we may learn what it is.That is why I asked if any one knew how to find out if you do have it.If I do I can then see infectious disease.
I wanted to tell you Morgan that I am a 57 year old woman.Did you think I was a guy too?That is too funny.I do have a lot of blessings in my life.I have the most wonderful husband in the world.He is 8 years younger than I.But we have been married 24 years.I had 2 prior marriages.One was an alcoholic.The other did street drugs.And when my oldest was about 7 she came into the house and said daddy ------ is smoking that funny cigarette.I decided then and there my daughters(3 of them) would not be raised in that type of enviroment.So I asked for a divorce and he took the youngest by him and disappeared for several days and said if you try that again I will take all the children and you will never see them again.
He was def mixed up in the head.But I truly believe he would have done it.So I had to out con a con man.I knew if I could get under my parents roof we would be safe.So...I moved in with my parents when my girls were 3,6,and 71/2.I lived with my parents for 5 years.That was hard.I gave up my social life so that my children would be safe.And that they would have my father as a papa.I had the most wonderful father and mother in the world.But it was hard to go from being the mother to being the daughter.But is all worked out.I agree with you that God puts us exactly where he wants us to be.I am trying to learn how to save stuff.This is all new to me.But I do thank you for being my first new friend.I wish I could go on more.But it is 4 a.m. and I better get some rest.Thank you Morgan for welcoming me into this place where we can help each other.Jo
Jo,
our little mishap is really funny. Well you seem as if you have enough problems for a lifetime also. I really do hope that you get your situation straightened out. It can be so so frustrating when you just don't have an answer. Sometimes you just think to yourself that the doctors are just so dumb, but in all reality they are just people too. I knew exactly what you were talking about when you mentioned that church services are hard on your body. Sometimes while sitting in church, I just can't get in a comfortable position. I squerm every which way. I had a chiropractor's appointment yesterday evening. Of course, my jaw was dislocated. ( I also have tmj ) The migranes are always horrible. I hate those days when the FM is really acting up. You become so sensitive to noise and light, then of course the migranes come. It's strange that even the water from the shower is painful. My mom got a new shower head. It only allows certian pressures to flow through it. It makes showers more enjoyable. Maybe that will help you! I'm really really sore today. I guess it's because of all the rain from the hurricanes down south. ( we live in a little town located in the panhandle of West Virginia called Martinsburg ) Right now we are looking to mve to a new house. ( due to finances) So I think that maybe the extrs stress of school and moving is taking a toll on me. I'm a junior this year. I attend the christian school that my church owns and runs. I'm so glad that the Lord has given me the blessings to go to school there. The teachers are all willing to work with me and my health issues. Well I need to go, I'm already worn out! : ) I will talk to you soon!
Sending prayers,
Morgan
I can relate on each issue you spoke of.I get migraines too.And the light and noise make it worse.You are lucky in a way.You became sick when doctors admit to such diseases.They didn't when I was your age.Maybe there is a cure sooner in your life than mine.And that would be ok.If I could help just by talking to someone then I feel really good.It helps me to cope with my problems by listening to others.And believe it or not I have been on the phone with a woman who heard about me and wanted to call me and we talked way too long.I live in Jacksonville.Florida.I was born here.My mother had me in the same room I had my first baby.And we get our share of hurricanes too.But my wrist are aching.So I will get back to you,Jo
Jo,
have you had much rain from the tropical storms and such? I hope not. I need to go, so I get plenty of rest for church tomorrow.Talk to you soon!
Sending prayers,
Morgan
Hi Morgan, how was church.I hope you said a prayer for me too.Yes the weather here is so strange.We have another hurricane on the way.And as Jacksonville really hasn't had much damage more than tree limbs and a lot of rotten wood.We just never know when it is going to hit us.We have been hit far too many times in the past to ingore it.But the people south of us are taking a beating.I am sorry I haven't been on the computer lately but I have had the flu.Called my doctor to call in something for it.And it still isn't gone.So I have a doctor appt tomorrow.And that means getting a shower,dressed,going out the door without shaking.And sit in the lobby and twitch and hurt no matter what.I will talk to you soon.I met Betty and she seems really nice.It is strange that we live in a different world than those who do not live in chronic pain.Well I am feeling pretty badly tonight so I am going to close.God Bless you Morgan,.....Jo
Jo,
I hope that your doctor's appoitment goes well. I see that you have met my friend Betty. She is such a blessing. She is such an encouragement to everyone that she meets. I 'm glad ti hear that your neighborhood has dodged the worst of the storms. I will talk to you soon. Good luck!
Sending prayers,
Morgan : )
Hi Morgan,Yes I met the wonderful Betty.Now I have 2 people to give me moral support.I have to get dressed soon and all of that.You know the things that drain you before you even get to the doctors office.I wish I knew the answer.You know I read things like 'I cured my fibromyalgia.I don't know why people say things like that.Because doctors barely know how to deal with it much less a cure.I think they must be people who have had a bout with barrs epstein or mono or something like that.Something that will go into a remission.Have you ever known for sure without a doubt anyone who had fibro who no longer has it.I mean yeah it does go into a state of being a lot better.But then that Fibro-flare rears its ugly head again.I guess what I am asking is.Is this a site of questions to ask doctors.And to include people to share their stories?Or can anyone just say things like they are cured without proof???I know you may think these are odd questions but I have just been taken over the hill so many times.I just don't want to get my hopes up.Take care and cya soon,Jo