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ALL NIGHT I LAID IN MY BED,
CRYING..
IN hellrific pain,my back stomach,and chest..
and everytime I roll onto either side,
my wrists and hands and arms ache?
WHAT THE HECK?
is the back related to this ?
my ribs kill me,I dont want to sleep tonight!
WHAT OR WHO SHOULD I SEE NEXT?
what type of doc?
no one is telling me what to do,
My primary tells me,to go to pain clinic?
YET THEY WONT SEE ME?
AND shE GIVES ME MEDICATION<
but says she neds help for me?
who?
anyone?
Slow down Sunshine.....It sounds like some anxiety is happening right now. First, take a deep breath and tell me what you are taking as far as medications and what are they for. Then tell me what doctor's you see and what for. Then lets break this down together, Okay.
Tammy
tammy,
I am under the care of my primary doc.Period,that is all.
I have since i moved to nj,4 yrs ago,feb. Before that I was in Az.
NOW..I have been to sevrail Pain Clinics,that refuse to treat,or even see me?
They dont like that I am on Pain meds allready,even though,I come with exstensive treatments,surgeys.and bad implant in my TMJ,joint.
I just had my gallbladder out and a heart cath done,last yr.
When I moved here to NJ,I soon became worse,and and realized,No one wants to deal with another docs screw up?
AND in NJ I am treated like ****! LIKE a druggie.
In Az,I tried all the things asked,tourtured with countless triggers,injections of this and that,botox as well.Accupuncture,rolfing,and tmj splints,lavages,arthroscopys,and ganglion blocks,using florioscope,and a epidurial once I had a wet tap'which gave me such pain!
I have my records with all the modalitys plus the diagnosis,and my drug use,and how I have never not been compliant!
I never abused anything.and I am so sick of how I feel now when I see a new doc!
all that being said ,in 2005,they found a cyst at the T2 level,in lung or on spine..
I had a pulmanary function test,and it was pos for COPD,yet the doc said I f I was that sick,I would be sicker?
My chest burns,and my breathing,is awfull.
I have a rattel,not a wheeze,and I coughed up blood! NOT from HARD coughing but just one cough and it was burning lung! so I went for another xray,and it said Phnemonia,and the doc said it said nothing else?LIARS,it said or underlying chronic disease,and should be revisited,TO date this has not occured,and its been 3 months or more!!MY CHEST KILLS ME< I use the albuterol inhaler 3-7 times a day! and HATE HOW SHAKEY it makes me..UGGG!
so And still chest burns and dry cough,every night,arround 7 pm,and through the day rattel wheeze now worse?
I tell my doc and she had me get a barium swallow(because I have hellish stomach,rib and back pain)
and is why I had the heart cath,and gallbladder out,even though the ultrasound also revealed a huge kidney stone in the mid lobe of right kidney!
and that I told them ALL"the stones in my gall,have been there for over 10 yrs!
what ever??
so ,they suggest litripsky,and THEN I am told gallremoval first,so I get that and I am worse?
and to fursther all of this I also have a Hemangeomia at T8,in T8 bone,and That area as well as my breast bone have been killing me
What happens when I tell the doc aboout this???
I am looked at like a *** hole?
and that HEmangenomias dont hurt neither will a Kidney stone in my kidney?
you know what else,
My symptoms have become worse!
MY tongue burns,I have chronic sore throat! with crapp allways leaching from my toncils,as well as a huge thing insde my mouth,on the inside of right cheek!
my neck,gets big lymph nodes,and the gland under my right jaw line,KILLS ME!
but the breathing and ribs and back,
WHich 4 yrs ago,only my shortness of breath and some breats back pain,
MY cheif complaint was
neck,ear eye,jaw,upper sholder,pain,also migranes
were t5he pain,
now it is,so bad,and the cyst at T2 and the hemangenomia at T8,and the flipp flop the T2 is in my lung other doc says its on my spine,and I have been to NYC,presbyterian hospital, to see top neuro surgeon,and then to deborha heart and lung said its not in lung??
that is messed up bad!
I also have a adenomia on the right kidneys adrenial gland!
I am now breaking out on my chin(stress or change?) and phsorisiss on my scalp.
I feel awfull,
I take 2 Blood pressure meds,
(norvasac and diovan with hct)1xday each
1 thyroid
(synthroid)1xday
for add
(adderal),30 mg 2xs a day
for pain
(roxycoton)15 mg evry 4hrs
no break through, meds at all I take naproxin like it is candy
for anexity and sleep
atavan .5 mgs 1x a day at bed
I have been taking ambum for sleep as well
10 mgs bed time,
or I take melatonin 3mgs
multi vtm
vtm e
vtm b complex
slow mag
slow d/calcium,c
freeze dried stinging nettels for sinus congestion
tums by the ton( joke)
albuetrol for oxygen
I have done detox heavey metals via nutrition
chryopractor
rolffing,accupuncture
all types of chryoprator,massage het cold,stretch,run,jump,kick
'SCREAM,,,,,SLEEP
HIDE HOLLER
CRY CRY CRY
LAUGH LISTEN TO LOUD MUSIC,AND DO ART!!
ok neurologst handeled my pain in Az,
here I get a primary care doc,
and the clinic I atempted last
NEVER HAD ONE OUNCE from my info
JUST on my name refused to see me
notthing
and they refused to say WHY!
so
based solely on my name
they didnt
allow me even a consult?
I have nothing to hide..
WHAT ARE THEY HIDEIN G from me for
linda
and I have been taking that dose for over 4 yrs,and on pain meds for yrs and yrs...
diovan with hct and norvasac
Okay, I have been in CP for 13 years and here is my suggestion. But first let me give you a little info about me. I am 45 years old I have had 15 knee operations, including a a total knee. 11 Back operations during that same time frame. I have wonderful doctors including a psychologist. Now first of all if you had a good doctor you trusted either in NJ or AZ get in touch either by mail, email or phone. Get them to make the recommendations and referrals to an internist, neurologist or doctor that specializes in pain management. Then find a pain management support group. Also take the time to make sure that all of the medications including vitamins and any over the counter stuff are not cause you adverse effects. You are mixing a lot of chemicals and sometimes taking certain combinations of all of the stuff you are mixing could cause some of the symptoms or making some of the symptoms you have worse. Whenever you tried to change doctors without referrals you do usually get treated like a drug addict. Now I have found from experience (being treated like a druggie) you need to very calmly ask them why you are being treated they way they are treating you. Okay now that you have a focus take one step at a time and slow down, do what you can when you can. As hard as it is don't give in to the idiots that should not be doctor's. Make an appointment with your PC doctor and explain your feeling and situation. If they don't what is happening or how you are being treated by others they cannot help you fix it. I this sound all well and good. I know what it is like to go through hell and I am getting ready to have 3 to 4 months over the hardest period in a very long time. I have an interspinal pain control unit. I am going to lose it for the first time in 10 years. I am terrified because my pain is between 8 & 9 of 10 all the time so you can image what it will be like without the unit. I am sure I will spend time in the hospital. But anyway back to you. Also check with a nutritionist at the local hospital about your diet and see if anything you are eating is also cause you problems. Again I have been doing this a long time. I did not believe any of my suggestion would ever help my out, but I was wrong. I hope you have found some comfort in my suggestions. Believe in yourself you are not crazy, stay strong, and don't give up. If a doctor or pain clinic turn you away you most likely don't what them on your team anyway. I am positive if you try what I am suggesting your will find peace.
Best Wishes,
Tammy
tammy,
yes I do know this about no referal,and along timeago
learned that the hard way,NOT realizeing that JUST because The doc wrote me a rx for a specialist,THAT DIDNT get me a a referance why I am visiting that doc?just to be able to go there?
RIGHT?
understand what i say here?
so....MY doc finnially called that pain guy and he lied and said he never said to have my pain guy call???
IT was a mess.
AND I dont know what they speak about behind closed doors? BUT
I know that I spilled my gutts to my primary doc about not getting tretament and my suspicsions that I am on a bLack list because of??
me or advocateing for my dad?
who knows,and she said she would her self call that pain clinic she has a friend there
and guess what,I called her back 3xs
finnially she said
well had her nurse state on the phone,
"i asked 2 clinics and they both are not accepting new patients"
well monday my hubby is comming with me,I cant stand this
I am up all night my ribs,my back,my **** neck,yes MY right knee,( i dont even mention my knee,) no where near your situation but 2 surgerys,and it is all swollen front and bakers cyst in back!!
I hate it ...
WHY do we look to thses guys to help when it screws us up worse,9 out of 10!
and hind sight is 20/20?
NO? yes?
If I were the king of the forrest!!!"
heheh
I am 47,
and am really bumed yet even more!
my daughter in law is sleeping here she is leaving my 24 year old son,and taking my scootchey coothch,grand daughter with to michigan.
I am so connected to my grand baby!!!
I cant take any more heart aches..ontop of deaths!
4 last yr in 40 days! and ITS so **** heelllllhel!
thanks,I will try,and will have hubby
to stress to her how I suffer all dam night..
heat pad every night and day!
thanks every so very much...
I pray you will be ok with the delievery system,
My pastor had this 2 yrs ago,Diffrent style?
and he had problems,Please be careful!
i need to go to bed
linda
I understand your pain problem bigtime. I found naproxen after a period of time exactly made my symptoms worse. The pain medications like darvocet and darvon, Tylenol will provide better pain management. I have a friend who is a chemical engineer who specializes in pharmacy meds.
Please do stress to the doctor all of your painful symptoms. If you have trouble remembering everything right it down and give it to the doctor. Make sure you have a pharmacist or go to the internet and make sure everything you are taking is okay to mix and which one you should and should not mix. It makes a huge difference in the absorbing rate of the medications. That way you know that you are getting the max. from each item you are taking. And don't forget the nutritionist, seriously. Also I find that the recliner is very helpful. Again, if you are not satisifed with a doctor get a new referral. You might want to try the internet to get a list of doctors who deal with you situations in your area. The reason I suggested a support group, especially if they have one at the local hospital is because you can find out who is good and who to stay away from. I truly believe if you can finally get a good doctor you will get the relieve you deserve.
Tammy
Linda, you poor dear!
You sound like you need more help from an internal specialist or somone like that.
I just don't know what to think of the horrible pain your in, the stress you exibit has to be making your pain even worse than ever.
I would definately go back to your pain specialist and see if he/she will refer you on to another type of specialist.
I'm so sorry that your suffering so and I wish I could do something to help you, but I will say that if we're allowed to get upset all the time, it will defineately make our pain worse. So I would try and sleep in a recliner, use some type of warm pad, make sure your head is elevated somewhat so you can breathe better and then get into your doctor as soon as possible.
I had to learn myself early on, that I had to keep my emotions under control and not allow myself to get so upset about everything, because it will make your pain much higher and far more miserable.
Please take care of yourself, calm down and call the doctor in the morning. You really need some type of sleep. When I'm not able to lay down as the pain is too high, I head for the recliner and sleep out in the family room. Hope something helps
Take care
Betty
ANN CAN YOU PLEASE EXPLAIN FURTHER,
NO ONE WILL HELP ME,
PLEASE TELL ME WHAT IT IS AND WHY IT IS THERE?ANYTHING AND EVERYTHING YOU CAN PLEASE...
OH I HURT AND YOU HAVE A HEMANGEOMA,MINE IS AT T8,IN THE WHOLE BONE AND A SMALL ONE AT THE END,DID YOU LOOK AT MY FILD IN OTHER LISTINGS? WHERE IS YOURS,OR IS IT THE CYST AT T2?MINE IS EITHER IN LUNG OR IN FRONT OF SPINE!
HELP PLEASE TELL ME WHAT KIND OF DOC TO? I NEEVR HEARD OF THOSE THINGS.
LINDA THANKS
I just wrote you the LONGEST response I think I have ever written and, duh; I ended up losing it! Aargh; don't you hate it when that happens??
Anyway: ask your doc (neuro or pain doc, pref) to check out your chostochondral cartilage.. it is what connects your ribs to your t-spine.. and, when it is inflamed, as mine has been for many years, it can be excruiating! I have been given the diagnosis of: Thoracic outlet syndrome, first rib syndrome, costochondriasis, thoracic scoliosis, and now: Trietze's Disease... Now, the Disease is a permanent thing, BUT, there is a COndition called Trietze's, too,and it is generally temporary. It has taken well over a dozen years for me to be diagnosed, too.
So, one thing you will need to be is PATIENT.. I think this is why we are called patients.. for all the waiting we do (to find out what is wong, generally).. Good luck and call a neuro or pain doc, please! Anne
thanks so much!!
I will check it all out I have thought my center breast bone is getting larger,and is so painfull I get such pain.
I said it wads growing calsifying? I need a real doc dong have either one of those!
Merry happy,
GOD bless.
How is your JAW?
Mine is hurting but that GOes with out saying...
linda
i WILL NOT DO THIS FORVER
i WILL NOT ALLOW DRS TO **** ON ME,AND
MAKE ME FEEL WORSE
I WILL NOT RUIEN IT FOR MY ENTIRE FAMILY BY BEING IN AIN
i HATE IT
IT SUCKS DAY IN AND DAY OUT
I NEED A OUT
ANY ONE KNOW WHERE TO GO IN NJ WHEN I FEEL I NEED TO STOP IT
BECAUSE IT SEEMS NO ONE WILL EVER BE ABLE TO HELP
I WILL HAVE NOT ONE MORE PROCEDURE NOT ONE MORE DAM DR WILL TOUCH MY FLESH
OR POKE MY SEAMS
NOT EVEN A STROKE OF A STETHASCOPE PAST MY CHEST
FILTH!! WASH IT
WASH YOU HANDS AND STOP KILLING US
I SUFFER AND AM DONE
I AM SO DONE PLAYING THE GAME OF SITTING DUCK
I WILL NOT BE STUCK UN THE EARTH AS I AM STUCK IN HOME
OVER
I am just investigating a drug that my Mom's doctor has prescribed for her.
I don't like her to take prescription drugs (she's 80) because of the side effects we've seen from her friends on drugs.
I "sympathized" with you and think I can help you.
Please e-mail me at karvev2000@yahoo.com
If I can be of help, GOD BLESS US!
To your good health
I was born with Hemangeomia. I am now 47 years old and trust me, it doesn't get easier with age, if anything everything else goes wrong with it. My hemangoemia is on my face, on the right side of my brain, in my right eye and down my throat.
I am sharing this hoping that there are more people out there with this condition that can maybe give me some help or information as far as getting rid of it, or at least living with it better. The pain is crazy. Right now, my eye on the right side is killing me. I have had this problem on and off for a while now, and no one can tell me what causes it or nothing. The pain come and is unbearable, then it leaves as mysteriously as it started.
I sometimes have unbelievable headaches. Sometimes it feels as if there are little things crawling in my head. My face also hurts, and it is not unusual to find me with a heating pad laid on my face. I have had many surgeries every since I was six months old, that is when my parents found out that they had a big problem. My hemangeomia started out as just a spot of the tip of my lip, that grew and grew. No one else in my family (on either side) has had anything like it.
I have lived a pretty good life. I am the mother of three wonderful boys and the grandmother of two beauitful children. Surprisingly enough, the hemangeomia didn't always give me as much trouble as it does now. I am older now and my body has changed, and thank God so have I. I have learned to deal with things and to be honest with people about my condition. I use to say that I had a headache when it was actually my face that was killing me. I avoided crowds of people for obvious reasons and avoided kids. I love children, but they can be very cruel. I had to sit my children down and explain to them about how kids can be cruel. And that they would use my condition as a way to hurt them. The only real problem that I had was with my youngest son. When he was five years old, he stopped waiting me to talk him up to the front door at school. I suspected something more than just the normal kid stuff, so I pressed the issue only for him to tell me that the kids made fun of me and that hurted him. Then the next year, he got into his first fight and it was with a girl!
Why? because she made fun of me. Thank God we got through that, but now it's my grandchildren's turn. This world does not allow for people who are different. And that is a shame.
If you are a doctor or you know of a good one, who knows about Hemangeomia, please let me know.
Cheryl 
I was born with Hemangeomia. I am now 47 years old and trust me, it doesn't get easier with age, if anything everything else goes wrong with it. My hemangoemia is on my face, on the right side of my brain, in my right eye and down my throat.
I am sharing this hoping that there are more people out there with this condition that can maybe give me some help or information as far as getting rid of it, or at least living with it better. The pain is crazy. Right now, my eye on the right side is killing me. I have had this problem on and off for a while now, and no one can tell me what causes it or nothing. The pain come and is unbearable, then it leaves as mysteriously as it started.
I sometimes have unbelievable headaches. Sometimes it feels as if there are little things crawling in my head. My face also hurts, and it is not unusual to find me with a heating pad laid on my face. I have had many surgeries every since I was six months old, that is when my parents found out that they had a big problem. My hemangeomia started out as just a spot of the tip of my lip, that grew and grew. No one else in my family (on either side) has had anything like it.
I have lived a pretty good life. I am the mother of three wonderful boys and the grandmother of two beauitful children. Surprisingly enough, the hemangeomia didn't always give me as much trouble as it does now. I am older now and my body has changed, and thank God so have I. I have learned to deal with things and to be honest with people about my condition. I use to say that I had a headache when it was actually my face that was killing me. I avoided crowds of people for obvious reasons and avoided kids. I love children, but they can be very cruel. I had to sit my children down and explain to them about how kids can be cruel. And that they would use my condition as a way to hurt them. The only real problem that I had was with my youngest son. When he was five years old, he stopped waiting me to talk him up to the front door at school. I suspected something more than just the normal kid stuff, so I pressed the issue only for him to tell me that the kids made fun of me and that hurted him. Then the next year, he got into his first fight and it was with a girl!
Why? because she made fun of me. Thank God we got through that, but now it's my grandchildren's turn. This world does not allow for people who are different. And that is a shame.
If you are a doctor or you know of a good one, who knows about Hemangeomia, please let me know.
Cheryl
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Two years ago I was in the same situation as you. My ribs would be so sore that I couldn't even roll over in bed at night. My back, stomach, hands, legs, neck, everything just hurt!!
I was diagnosed with Fibromyalgia and the medication my doctor gave me has been a great help. The pain in my ribs I have not had (only on occasion and very mild) since starting treatment.
I would go back and talk to your doctor. You need to find a diagnosis and get treatment. Also, sleep is very important when it comes to chronic pain. Lack of sleep will only put your body in more pain. Trust me, I have been there.
In the mean time, do you have a heating pad? They help a lot and hopefully you can get some sleep. Or try some of that mentol pain relief gel or patches. You can get those at any drug store.
I hope you are able to get some relief soon.
Bekah
hey,thanks,I sleep with a heating pad for 5 yrs now! and just purchased a heat blanket as well!
I have had that diagnoseis on and off..
I have physical things lurking inside,and have had surgery to fix,and made it worse!
I also have breathing difficulty.
the whole thing is awfull.
Waste of so much time.
what other meds do you take?anti depressants?
amyltriptalen?
I have been there..I have had so much!
I feel my ribs are from my spine? or lung?
who knows.
I am scared because a delay in a diagnosis can be futile when it comes late!
Peace
linda