HELP....GERD? COSTOCONDRITIS? FIBRO? 5 MONTHS OF PAIN!!! CAN'T BREATH.....

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OUTOFHOPE
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 6/9/2007 10:53 PM (GMT -6)   
 
Hi, of course...I am new here, but thought I'd try here, to look for some answers.  My story is long, but very puzzling.  Starting the first week of Jan, I became short of breath.  My breathing became very shallow and felt almost impossible to take a deep breath. Then, one week later I began having pain in my sternum, that radiated into my ribs and my back and neck. I had just started a new job, and refused to give in and risk losing it.  I made it 7 days before it was just so unbearable I could not handle it.  I visited the ER where I was told I had "Bronchitis and Pluerisy" What???  I had not been sick, AT ALL.  But desperate, I took the meds given to me, which were steriods and anti-biotic.  (the only test given were, ekg, blood,chest x-ray.)  2 weeks later I followed up with my "new primary care dr" still in excruciating pain, still breathing shallow, in tears and begging for help.  Upon his exam, I found out, that I was sooo tender in my chest wall and ribs, that I could not stand to be touched.  Dr. advised me I had "costochondritis"  I had never heard of it and was convinced he was making it up.  But I did my research and found some similarities.  He prescribed Celebrex for inflammation.  Another week goes by and while the chest wall pain has become tolerable (or maybe I am numb to it now) I was still having alot of trouble.  I called his office, he wanted to call me in Xanax, as he blamed the breathing problems on anxiety, (caused by the pain).  And also sent me to pulmonary doc for lung function test.  I though I was never going to survive this.  Results....normal. Long story a little shorter 5 1/2 months later, I am still miserable.  I rarely have a day that this does not affect me.  They have now determined that I have Fibromyalgia.  A diagnosis I refuse to accept.  So, I found a new doc, a female this time and she has ordered test such as "upper gi, echocardiogram, gall bladder ultra-sound, and spine and thoracic x-ray.  I go back to her on the 15th and I pray that she has some answers.  So far the ultra-sound showed no gall-stones, and the upper gi...well that was just miserable.  But I do not have the results yet.  I also have a "hanging" in my throught that comes and goes, but comes, more than it goes.  I have GERD, IBS, VOCAL CHORD NODULES.  I have has a hysterectomy.  Does this sound familiar to anyone?  I fear my esophagus may have some serious damage.  This is consuming my life.  HELP!!

Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 6/10/2007 3:52 AM (GMT -6)   
Outofhope,  I'm not sure what is going on with you, but wanted to respond to you.  I usually post on the epilepsy and asthma forums.  I did have my esophagus and a hiatal hernia repaired in 2005.  The main reason I had the esophagus repaired was because my asthma is severe and my doctors felt that since my GERD was so bad that it was probably triggering some of my asthma attacks.  With that said, I don't know if your GERD could be triggering any of your pulmonary problems or not.  I'm sure this is even more stressful to you since you have just started a new job.  You indicated that the upper GI wasn't much fun.  Did you throw up?  I threw up all over the technician.  She was very kind.  I have a bad gag reflex and any of those tests where you have to drink stuff, well, I just don't do well.  I hope you get some answers soon so you can start feeling better.
 
Take care!
 
Carla

refluxsux
New Member


Date Joined Jul 2007
Total Posts : 6
   Posted 7/17/2007 6:32 PM (GMT -6)   
I have autoimmune/inflammatory issues too. I have a costochondritis (a generic term) where I had pain in my chest/rib and finally my sternum separated from one of my ribs, scoliosis, hashimoto's disease (an autoimmune disease), IBS, GERD, reflux into my vocal cords, and a few other things. Hang in there.

veraba
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/25/2007 11:23 AM (GMT -6)   
I can appreciate your frustration. This certainly sounds like an autoimmune disease. If it is autoimmune, the steroids would have quelled your pain (if the dosage was high enough.) Did the steroids make your pain better, or did they exacerbate it? What are your blood test results?
Do you have any other symptoms you didn't mention? Sometimes we don't like to mention every single symptom, especially if the MD's treat us like nut cases!
I have a rare autoimmune disease that was diagnosed after 13 years of going from MD to MD. I finally started getting treatment in 2004. I have GERD, costochondritis and thyroid nodules, among other things. I did have intestinal problems, but those have been resolved.

hopeisreal
Regular Member


Date Joined Sep 2007
Total Posts : 345
   Posted 10/25/2007 12:24 PM (GMT -6)   
OMG---I thought I was reading about myself!  I have been experiencing very similar situation/pains/symptoms since May!
 
I was working out 4-5x/week (cardio--spinning, eplitical, treadmill; weight training--machines like rowing, upper body---light weights, but still some resistance)---when I started getting pains in my sternum and upper right quadrant (under my right ribs, around to my back---up to my shoulders, neck, and the xyphoid process--that little doo-hicky that is where your sternum splits was sticking out!)!  It also hurt to eat--and felt like food was getting stuck where your sternum splits---along with the pain on the right side after I ate.....
 
I couldn't walk to my mail box without feeling like someone punched me in the gut---and I lost my breath!  It was torture! 
 
I had the following tests done:  spine xray, Stress EKG, B12 deficiency (b/c my right arm and jaw were numb), Abdominal Ultrasound (gallbladder), Gall Bladder hida-scan, MRI, celiac disease bloodwork, liver/kidneys/white-red blood work, MRI of thoracic region.  I also had a rheumatoid/arthritis antibody test done!   I have gone to my Primary, a Physical therapist, a Back Specialist and a Chiropractor.  Next week (after waiting for 8 WEEKS TO GET IN AND SEE THIS DUDE)---I am going to a GI specialist! (I went to a GI specialist 2 years ago for GERD--he I had some spots outside my espohogus---had an endoscopic ultrasound done--they were just 'fibroid-like cysts----fluid.  Go home and get over it')-----GI Specialist #1 refused to see me (NO REASON GIVEN- I think it's b/c I cried in his office and he had really bad bed-side manner)--so, I had to find someone who would see me!  That in itself, was a trip----DOCs are afraid to see you if you have seen someone else for a similar problem!   OOY!
 
ALL TESTS HAVE COME BACK NEGATIVE! 
 
I have been on:  Prilosec, Acidphex, Protonix, Lexapro, Valium, Celexa and Klonopin (last four are for anxiety and depression/panic--huh?)
 
When I went to the PT---she did say that my rib cage, on my right side, was higher than my left---and she could feel inflammation (Costochondritis).  I also had some "bulging" on mid-back discs T4-T6, and thought maybe I was having 'referred pain" to the front/abdomin.  T4-T6 were misaligned---and I got those back into shape--but, I still have stiffness--and pain in my back/chest/rib cage on the right side--sometimes left side!
 
BUT----as time went on--and I felt more anxious about the situation (no--the Lexapro, Valium, Celexa---didn't work----I had an adverse affect. Klonopin works--but, puts me in a Zombie state of mind). 
 
6 Months later---and all of the crap mentioned above---I still have pain, and no answers!  You (in general) really start to think you are going crazy with everything going on!
 
I still have aching/pain in my mid back, right side ribs, and between my sternum (where it splits).  I still have a hard time eating much----and am tired of eating yogurt w/ granola, chicken/cheese sandwhich (with nothing on it), bland food, salad (with no dressing), and chicken soup!
 
SO---my point is (sorry, I do get long winded)-----I can TOTALLY sympathize with how you are feeling!  I have been posting for a few months about these exact type of symptoms---and no one has been able to answer me (not even the MDs)----
 
I hope that you can find some answers----and know, that if this situation is giving you health anxiety/panic---that it is OK to talk w/ your Physician about it---and see if taking something to help you 'relax' about it will help you get through it until you can get some answers! 
 
I am hoping to get some answers in the next month or so----but, this waiting around for appointments drives me freakin' insane (figuratively speaking---LOL)! 
 
If you still feel bad---continue to post here---even just getting a cyber hug helps a little!  I feel your pain--and know exactly how you feel!  How strange that someone is experiencing the same things as me! 
 
Let us know what happens, so I can talk w/ my MD about it too!

hopeisreal
Regular Member


Date Joined Sep 2007
Total Posts : 345
   Posted 10/25/2007 12:28 PM (GMT -6)   
Refluxsux (love the name) and Veraba---can I ask--- what are you taking/doing for the conditions you know you have?

What kind of blood tests do they do for autoimmune diseases? I had so many tests---Imay have had it already--and just forgot about it!?

Thanks!

Laurel

veraba
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/25/2007 1:26 PM (GMT -6)   
Hi Laurel,
This phrase in your email, "and felt like food was getting stuck where your sternum.." really stood out to me.
First, let me say that in my case, I had an echocardiogram of my heart which showed "dysfunctional dysthymia'. My left ventricle was "slightly hard' and that resulted/results in me being out of breath. There is no way I've heard of to fix it. I just exercise at a much slower rate & feel better.
Second, the MD to see for relux is an ENT. He/she will tell you to eat smaller meals, not to eat within 3 hours of laying down (in bed)/going to sleep, and to put something 6" tall (like a long piece of wood) under the top of your mattress. It will help keep food from traveling out of your stomach By the way, I take 80 mg of Nexium for reflux; 40 AM & 40 PM. With my particular disease, reflux always occurs with a flare so it never goes away forever. I don't have anything that feels like someone punched/kicked me in the stomach, but then again everyone is unique.
For autoimmune disease there are many tests. The most basic are: CRP (shows inflammation of blood vessels,) ESR (sed rate shows general inflammation,) ANA (a test for Lupus & other autoimmune diseases. There are a lot of other tests! A lot! The ones I listed above are the most basic. Keep in mind that some people with autoimmune diseases have perfectly normal blood test results, so often times the rheumatologists follow symptoms as well.
I used to get a feeling of food being stuck in my throat. Now that I'm on meds, I no longer feel it, except when I am in a flare. I had/have that feeling because my throat literally swells; food has a tough time making it into my stomach.
In the past My gallbladder felt awful; finally they removed it, though it didn't show the typical signs of inflammation/stones. Sometimes the area still hurts, though I know now that it is my pancreas.
Laurel, I went from MD to MD to MD in Dallas, Lake Forest, Chicago & Charlotte before they figured out what condition I had. More than one MD told me it what is my head. It was very discouraging, but I kept on going.
For my illness, I take the Nexium, Cellcept (an immunopsupressant that is used for many autoimmune diseases, as well as transplant patients,) Prednisone, Lyrica (for neurological pain/numbness/fibromyalgia,) a multivitamin, Biotin (for neurological pain)(it's sold OTC), Cymbalta (for pain & depression), Xanax (.5 mg - I use it whenever necessary - you need it for my diagnosis!), Flexeril 20 mg (at night to relax muscles - I think some people with fibro may take this as well), Darvocet (for pain), and Flonase to keep my sinuses open ( always a battle), Singulair (to help keep down the inflammation in my lungs & help me breathe, and Lunesta that I take once a week or so to help me sleep.
Laurel, what, if any, problems do you have with your ears & sinuses?
Incidentally, I have an increased sed rate & CRP & white blood count, but many people in my support group have NO abnormal blood work.

hopeisreal
Regular Member


Date Joined Sep 2007
Total Posts : 345
   Posted 10/25/2007 1:51 PM (GMT -6)   
Veraba:

Funny you should ask about what problems I have with my ears/sinuses?! This whole dang GERD issue started b/c I would have chronic sinusitis! went to an ENT specialist---who put a camera down my nose---and told me I still have my adenoids--and they were BIG! He also said he could've taken them (the adenoids) and my tonsils out right then--b/c they were all swollen!

That was 2 1/2 years ago! My primary MD suggested I go to the GI #1 guy b/c there is some correlation b/t GERD and throat problems----that's when the GI #1 guy suggested an endoscopy---in which he found some "submucusal blebs" at 39 cm of my esphogus. There were other ones around too--but, this one 'bleb' in particular---he wanted to have checked by CT and then, endoscopic ultrasound---b/c he couldn't tell if it was solid, or fluid! It ended up being "like a pimple" (yuk---I know--that's what the GI specialist said who did the ultrasound)---it moved out of the way when the ultrasound went by it----so, it was nothing to worry about---the cyst is on my RIGHT side! I also had "slight" hiatal hernia, and mild gastritis---nothing REMARKABLE, in his opinion!

Then, in May---I also found 4 lumps in my right breast---panicked (for about 14 hours---no lie), and went to my OB/GYN for an exam--had an ultrasound done---went to a breast specialist---(MD)---and he told me that they are just fluid----no need to worry---they may be painful, but take some Advil/Motrin. They will disappear when I hit menopause (gee, thanks)!

So----I have had sinus problems for many years-----especially after having children and having them get all kinds of illnesses at day care and school! Ear problems seemed to go with it--b/c the pressure built up from the adenoids inflammed---and my tonsils.

But----I haven't had ANY throat/ear problems in 1 1/2 years (knock on wood)!......These other problems came----and I had no respiratory/sinus/ear problems at all last year 1/2!

I am scared to go and see GI specialist #2 b/c the report from GI #1 was kind of 'rude'---'it's all in her head....neurosis"---and I don't want that to get in the way of GI #2 trying to help me-----b/c the pain is there! I have the anxiety---b/c of the pain-----NOT, the pain b/c of the anxiety! It's so frustrating!

thanks for answering my ??---I feel like I have a long road ahead of me----I hope DH can hold on that long---and that I can hold on that long! Most days, I just wanna cry! ;)

mistyblu
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 10/25/2007 10:48 PM (GMT -6)   
I am 27yrs old and have been dealing with this for a while. It started off with chest pain and then that feeling of something being stuck in my throat. I'm tired and feel like my head is in a cload, that spacey feeling. I don't have this symptoms all the time they come and go. I had this feeling in my throat all day long some days. Eating never had anything to do with it. It would come even on an empty stomach. I have had Drs. tell me it is acid relux. I seen a GI Dr. and he did a EGD with a bravo placement to check my bodys PH level. Like I already knew I didn't have acid reflux. I didn't think I had all the symptoms. I didn't have the burning feeling in my chest and the acid taste in my mouth. My Dr. sent me in to have an MRI done. To make sure everything was ok in that area. I seen a Neurologist to get the results and found out that I have Chiari Malformation Type 1. Only an MRI can tell f you have this. Not an X-ray or Ct scan Basically Chiari Malformation is where your brain is to big for your skull or your skull is miss shaped and it pushes you brain back. It causes the brain tonsils in the back of your head to be pushed out of the bottom of your skull. Causing a hernia. They call it herniated tonsils. It restrict the spinal fluid to your brain. It can cause alot of problems.

skippy3715
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/11/2009 4:53 PM (GMT -6)   
I about died when I saw your post..... I had the very same symptoms. Trouble breathing. Pain. Anxiety. Had a colonoscopy, endoscopy, ultrasound of liver, gallbladder, pancreas, cat scan. I was miserable.

Bottom line, I stopped using splenda and alot of my symptoms went away. I stopped using Lunesta (only used it once a week) now my chest wall pain is gone. Lunesta also gave me a bad taste in my mouth. I feel like I have been reborn.

If you use either of these products please stop and let me know what happens. by the way only 6% of people get chest wall pain from Lunesta. Please let me know.

Take it easy

ITSJUSTME0000
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 6/11/2009 6:09 PM (GMT -6)   
I ALSO HAVE THE PAIN AND BREATHING PROBLEMS...MY GI TOLD ME AT FIRST IT CAN NOT BE FROM THE GERD..SO I WENT TO A LUNG DR AND PASSED THE LUNG FUCTION TEST...I ALSO COPYED ALL THE INFORMATION I FOUND ON LINE about GERD AND BREATHING PROBLEMS... WHEN WE STARTED TO TALK about IT AGAIN I HANDED HIM THE INFORMATION...I THINK I SHOCKED HIM...HE SAID OH I SEE...WELL BUDDY OH I SEE TOO NOW DO YOUR JOB...YOU GET PAID WELL... MOST DAYS ARE BAD FOR ME..I OFFEN WAKE UP SICK...GET SHARP PAINS HERE AND THERE, THROW UP AND OF COURSE THE BREATHING...AND LUMP FEELING IN MY THROAT... RESEACH AS MUCH AS YOU CAN...AND I WISH YOU THE BEST OF LUCK...PLEASE LET ME KNOW HOW YOU MAKE OUT...MICHELLE

beareilly
Veteran Member


Date Joined Mar 2009
Total Posts : 553
   Posted 6/11/2009 6:47 PM (GMT -6)   
Hi OUtof hope,
 I had costcochondritis as well during my years with Gerd. I didnt know what it was either and when they gave me that diagnosis I was like whoa. You cannot lift even a gallon of milk when its inflamed. It requires anti inflammatory and rest.
I recently had surgery for my gerd. Gerd causes anxiety with alot of patients, so you must use mind over matter or tke the  prescribed medications. If you read the other posts you will find alot of information about GERD and other peoples struggles.
Take care,
Bea

miuras
New Member


Date Joined Dec 2009
Total Posts : 1
   Posted 12/31/2009 1:29 PM (GMT -6)   

These symptoms are precisely what I experienced in Sept 09. I went to the GI doc and he put me on Acifex. Within 3 weeks I felt back to normal and stopped the acifex. Then, in beginning of December, I started to have the same symptoms again, although more intense. I went back on the Acifex and I feel like I am slightly getting better each day , but still experience mild sternum pain and breathing issues. It seems like the symptoms are more exagerated at near the end of the day or in the morning.

I don't think "outofhope" ever followed up on here diagnosis. Does anyone in this forum know what her final diagnosis was?

Thanks,

Mark

OUTOFHOPE said...
 
Hi, of course...I am new here, but thought I'd try here, to look for some answers.  My story is long, but very puzzling.  Starting the first week of Jan, I became short of breath.  My breathing became very shallow and felt almost impossible to take a deep breath. Then, one week later I began having pain in my sternum, that radiated into my ribs and my back and neck. I had just started a new job, and refused to give in and risk losing it.  I made it 7 days before it was just so unbearable I could not handle it.  I visited the ER where I was told I had "Bronchitis and Pluerisy" What???  I had not been sick, AT ALL.  But desperate, I took the meds given to me, which were steriods and anti-biotic.  (the only test given were, ekg, blood,chest x-ray.)  2 weeks later I followed up with my "new primary care dr" still in excruciating pain, still breathing shallow, in tears and begging for help.  Upon his exam, I found out, that I was sooo tender in my chest wall and ribs, that I could not stand to be touched.  Dr. advised me I had "costochondritis"  I had never heard of it and was convinced he was making it up.  But I did my research and found some similarities.  He prescribed Celebrex for inflammation.  Another week goes by and while the chest wall pain has become tolerable (or maybe I am numb to it now) I was still having alot of trouble.  I called his office, he wanted to call me in Xanax, as he blamed the breathing problems on anxiety, (caused by the pain).  And also sent me to pulmonary doc for lung function test.  I though I was never going to survive this.  Results....normal. Long story a little shorter 5 1/2 months later, I am still miserable.  I rarely have a day that this does not affect me.  They have now determined that I have Fibromyalgia.  A diagnosis I refuse to accept.  So, I found a new doc, a female this time and she has ordered test such as "upper gi, echocardiogram, gall bladder ultra-sound, and spine and thoracic x-ray.  I go back to her on the 15th and I pray that she has some answers.  So far the ultra-sound showed no gall-stones, and the upper gi...well that was just miserable.  But I do not have the results yet.  I also have a "hanging" in my throught that comes and goes, but comes, more than it goes.  I have GERD, IBS, VOCAL CHORD NODULES.  I have has a hysterectomy.  Does this sound familiar to anyone?  I fear my esophagus may have some serious damage.  This is consuming my life.  HELP!!

Stormienite
Regular Member


Date Joined Dec 2009
Total Posts : 186
   Posted 12/31/2009 1:50 PM (GMT -6)   
ItsJustMe:  If your gastro Dr said your breathing problems couldn't be due to gerd, he's a complete idiot and you need to find a new doc.  If you have gerd and reflux and it comes up into your esophogus it can erode your vocal cords.  They won't work correctly.  They'll close when they're supposed to be open.  The part that's burnt won't want to touch each other so it's like trying to breathe though a straw with stale air.  My suggestion to EVERYONE is to get referred to teaching hospitals in large cities.  They have all the state of the art equipment and are up to date on all the different diagnosis and techniques.  After 8 months of suffering I was send to a teaching hospital 2 hours away where I was diagnosed in 1 day.  Imagine that.
Rapid Cycling Bipolar Disorder (and about a dozen other things)
300mg Lamictal
90mg Pamalor
60mg Prevacid
2mg Niravam (Xanax)

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