Pain in my chest... fibromyalgia?

Sorry for the book...

I've had this pain in my chest that just keeps coming back. It is right between my breasts, a little to the right. When it all started, my primary thought it was either anxiety or an esophageal spasm. He gave me anti anxiety meds and Prilocet.

Fast forward a year and a half later and I have been to every specialist under the sun. The GI doctor and ENT see no evidence of GERD. I had an endoscopy which only showed a little redness in my stomach. Biopsy was clear.

I have facial flushing episodes that have gotten bad enough that I have to hold ice packs on my face because it burns so much. It sometimes also happens on my ear. I have very, very dry flaky skin. My hair is thinning. I had a thyroid ultrasound that showed a mild goiter with multiple nodules, but my thyroid bloodwork (yes, they did the whole panel) is fine and the largest solid nodule is 9mm.

I've had antibody tests for lupus and various other autoimmune disorders (nothing related to thyroid though.) My CBC shows a decreasing WBC and my lymphocytes are always flagged low. I have low b12 and vitamin d. My calcium has been flagged high a couple of times and remains at the top of the range if not flagged.

Now my throat hurts 99% of the day. It hurts a bit more after I eat, maybe just from the use because it doesn't seem to be because of any particular type of food. I've had a celiac test as well and that was clear.

My neck hurts in multiple ways. I feel like someone is holding their hand against my throat. I have sharp pains in my neck. The back of my neck and upper spine are painful when I have spend any amount of time walking around.

I have developed a cough for a few months now that is mostly non productive, but I do sometimes cough up white or pink tinged phlegm with bubbles. My chest sometimes burns and/or aches. Right now it just kind of feels like there is a pressure on it. My allergist gave me a spirometer test and it was something like 70% with no improvement after breathing treatment. So no asthma.

When I first developed the cough I went into the urgent care because I was having the chest pain, but it was radiating to my back. The doctor told me the right side of my back was swollen (she didn't give me an X-ray though, she gave me muscle relaxers). She also gave me lidocaine for my throat, which did nothing. The stuff they used to numb my throat at the ENT also did not touch the pain. I've had many doctors tell me my throats looks red, but the ENT said it did not.

The last time I had an X-ray around 3 years ago on my chest it showed peribronchial cuffing.

I was diagnosed with chronic bronchitis as a child and suffered from it for most of my adult life. Things improved a bit after I quit smoking, but I still have a case of bronchitis at least once a year. Still, this feels nothing like bronchitis ever feels. The phlegm is different and it just overall feels different.

On top of all this I have been getting horrible migraines at least once a week, one of which I recently went to the hospital for.

I had a neck X-ray Friday that I haven't gotten the results for. They're giving me a PH test this week just to rule out GERD definitively.

I am so at a loss as to what is going on. I am going back to my primary this week and I am so nervous that it is just going to be another disappointing doctor visit with no answers and no promise of an answer. I've had fibromyalgia suggested to me twice. Does this sound like fibro? If anyone can help give me a little direction I would be so grateful.

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  • Not sure but I sometimes feel like I have it to.

  • Sorry I can't be of much help, just a question about the chest pain.

    Is it always in the centre or does it sometimes show in other places? Does it get worse or "show" during high emotional times?

    The reason I ask this is because it's possibly Costochondritis. I have this and it can be a crippling pain. Worth having a research on the symptoms.

  • It's just slightly right of center and always in the same exact place. It seems to come on randomly. I usually notice it when I am at rest. I don't really get very emotional very often.

  • Being in the exact same place I wouldn't expect it to be costochondritis. Normally that presents itself as a pain that will be in one place, then the next time it could be in a different place of the chest.

    I'm wishing you the best of luck in your diagnosis and hope it's not too long until the pain can be managed x

  • It definitely sounds like GERD. I had suffered on and off for years (almost 30) before i was diagnosed. The pain can be quite alarming and can move around, i had gone to the ER many times just to be told i am fine. Sometimes, it would be right between the the breasts, and other times it would move up to the bottom of my throat. Stress can affect it i believe, but it is mostly your diet.

    Hope this helps, best of luck.

    Cheers!

  • Have you seen a respitory specialist yet?

    If not, ask to be sent...... Also, check all the DRs in your surgery. I did at my old surgery n found 1 of the DRs had a side line in respiratory disorders. So if I had breathing related stuff, I went to him.

  • I have not. I suspect that may be the next specialist I am referred to. My primary seems to be quick to pull the trigger on referrals and new medications.

  • i honestly wish i could do more than just send a message of support.iv been also going round in circles for almost 7 years with very similar issues every time Fibro was mentioned id shake my head in disbelief and search frantically for the 'REAL' diagnosis.all that i can say is from past experience,this wonderful site and support,with these symptoms if not diagnosis,we can at least be there for each other.iv said before,it throws EVERYTHING at you this condition.brightest blessings,Sharon.x

  • Hello

    I have ME & fibro and other stuff to. I also get something called Costochondritis and when I get it it hurts like mad. Read up about it ... just a suggestion ... I do t take anything for it I just let it subside and if in four days it hasn't gone I see GP.

    X

  • I wouldn't say this "hurts like mad." It is just a significant pain that really makes me wonder what is causing it.

  • I know it is frustrating when you don't get answers, but sometimes there are no answers. Doctors make us think that medicine is a science and there is an answer for everything, but medicine is just as much an art as a science, in fact the degree they get is in the 'art and science of medicine'.

    Hold the good stuff in your head; you have had a lot of bad things ruled out. The more you worry about the bad things, and the more stressed you are about not knowing, the worse the symptoms will be.

    And it is probably not just one thing. Life would be so much better if one condition caused one set of symptoms but our bodies haven't read the med text books, and they don't map onto these artificially described diseases. Life is a whole lot more messy than that.

    With pain things get even more tricky. Pain and other sensations are felt in the brain, not in the body, and that means that sometimes the brain gets things mixed up or feels things more strongly, even if there is no stimulus there.

    Globus is a good example. It is where you feel like there is a lump in your throat, or that there is a lot of mucus in your throat, when in fact there is nothing there, it is just the brain interpreting it as if there is. They used to think this was a psychiatric disorder but medicine thankfully has moved on since then.

    Perhaps the reason why they are suggesting fibro is because that is a similar thing, it is where the brain thinks there is pain caused by damage where there is no damage actually there. So maybe it would be a good idea to explore that.

    Good luck, I hope you get some relief soon, but remember, you might not get answers to it all, not because the doctors can't be bothered to find out, but because sometimes these things are just unknowable.

  • I appreciate your taking the time to write this. However, I have faith there is an answer. While it is true that this may not all be one thing, something is definitely causing it. What originally led my primary towards fibromyalgia was the inclusion of a set of symptoms that were being caused by a medication I was recently tapered off of. I am still on one medication that I believe could be causing the neck and throat pain as I have read that others have the same issues. Once I get tapered off this medication I might be able to get to the bottom of it. Thanks again.

  • i am not sure about a lot of your symptoms especially without knowing what medication you are on but the chest pain sounds familiar.

    I have had chronic pain in my chest for over 15years. The pain is between my breasts and is tender to the touch. It's radiates around my chest and back, basically where the bra line is (it feels like a tight metal band applying pressire). I also have pain in my upper spine in line with the chest pain.

    My original diagnosis was costochronditis or tietzes syndrome (my spelling may be off) which can occur after a chest infection, as coughing can set it off and make it worse. i have also had it suggested that i could have had pleuretic chest wall pain (again sorry if my spelling is off). I also get headaches and neck pain but for me that is caused by hunching over in pain, raising my shoulders up and my medication. I was passed from pillar to post for years but it was my chiropractor that diagnosed me, six months before my pain team!!

    i haven't met many people who have chest pain, including people i know with fibromyalgia. This has meant that getting a diagnosis was difficult for me and treatment even more so as usually i was the first one to be treated for the type of pain i have and its location.

    i also found that when the medical profession is at loss they blame the patient or get very defensive. They like to diagnose, treat and cure so when this is difficult to do you get passed around.

    i am not sure if what i am saying will be of any use but i thought i would share as some of your history sounds familiar.

    Fibromyalgia is usually only diagnosed when everything else they can test has been ruled out, making diagnosis slow. I hope your next appointment is not as disappointing as you fear.

    look after yourself

    x

  • Fifteen years? Wow. I can't imagine! So sorry you are dealing with that. This specific pain is always in the same place and it is inside and not painful to touch. The other pain includes both a widespread ache in my chest and a horrible burning pain that comes and goes every once in a while. But the pain that is in the same place has been in the same place for three years and is probably the longest symptom I have had. But now that you mention it, the spine pain is in line with the chest pain. I never really noticed that before. So maybe there is a connection there...

  • My pain was not sensitive to the touch when it started, it has become more sensitised over the years. I remember trying to get people to understand that it felt internal when it started but i was told that wasn't possible!!

    After about two years another type of pain developed in my chest. This pain was different, with a burning feeling and lots of nausea and vomiting. After another couple of years i was diagnosed with gall stones and when i had my gall bladder removed that pain went away.

    i felt it was hard just to get people to listen to me, to follow through with tests and to understand the levels of pain i was/am in.

    May i ask what medication you are on? Does it help?

    i hope you get some answers soon.

    x

  • Ah! Yes. I also had my gallbladder out a couple of years ago. That has ultimately caused some digestive issues here and there, but I am currently not having any since I stopped taking the Prilocet in preparation for a PH test they are doing this week to rule out GERD. I am now only on Wellbutrin, which I want to get tapered off of because I have heard of others having neck, throat and spine pain that went away after they stopped taking it. I was just tapered off of Lamictal and a bunch of symptoms such as nerve pain and facial tics went away (which is part of what was leading my primary towards fibro). So now I just really wonder what stopping Wellbutrin might take away.

  • And I think I more or less just feel like a crazy person at this point with all of these problems. Do you ever leave a store with those little alarm detectors and even though you obviously did not steal anything, you brace yourself for a moment when you walk through, worrying the alarm might go off? I just feel like no one is taking me seriously anymore because I have been sent on this wild goose chase partially because of side effects from all the different medications they put me on. Every time I go to my primary I leave with three new medications. I have a pharmacy in my kitchen.

  • You are in the middle of no man's land looking for a diagnosis which may be impossible for a doctor to give. I suspect that you have multiple issues. Each issue is very minor and by itself would cause no problem. Thus no issue can be seen. However, you have multiple minor issues. These minor issues add the stress together pushing the total stress close to the stress breakdown point of your body's engineering system.

    You are going to need to find ways to get the total stress down so that you can function better. I am not a doctor and do not have the means to give a diagnosis. I can only make suggestions for investigation to see if the investigation can give you a better management handle on things.

    Seeing an Alexander Teacher would be useful. They can teach you ways to reduce the stress you are experiencing. Seeing a McTimony chiropractor would also be useful as they can reduce the stresses from micro-cramps that may exist in various places in the body.

    Hopefully trying what I suggest will give you an improved management handle on you are experiencing. The chiropractor will also give you a second opinon which may be useful.

    Hope I have been able to be helpful.

  • These issues may seem minor to you, but not being able to breathe well or move around without having more pain, feeling like you have strep throat every day, etc is certainly nothing minor. Issues have been seen (lung function is decreasing, b12 and vitamin d are down, WBC is down, goiter, back swelling, red throat), it is just a matter of getting to the bottom of it.

  • Please re-read what I have said. I am aware that you have something which is not minor. I am trying to explain the difficulties you are having from the issue of looking for symptoms that can give a diagnosis of what you have.

    A patient will pick up a problem before a doctor is able to see it. When a problem is presented to a doctor there may or may not be enough strength of symptoms present for the doctor to be able to see anything. If the doctor cannot see anything then they cannot make a diagnosis. It is possible for a patient to have a multiple number of problems. Each problem is presenting symptoms that is below the threshold of strength for a doctor to see the problem.

    Each problem provides a stress on the body's engineering system. As the effect of each stress rises the ability of the body's engineering system to cope diminishes. The person with the multi problems is well aware of the difficulties they have. The doctor is unable to get a handle on the issue for there is nothing definite that the doctor can see.

    Have I explained myself a bit better?

  • That does make sense. Couple that with the fact that the doctors where I live are overwhelmed with too many patients and are pressed for time and I think it is just a problematic system.

  • Chest pain is definitely not my idea of a minor issue. And i hate the way that if professionals can not find a diagnosis they tend to suggest its because you are emotional!! I am not denying pain has an emotional component but for myself i didn't get "emotional" till after the pain started. It's easier for a professional to suggest the issue is yours rather than saying i dont know.

    The meds you mentioned are usually used for mental health problems and in my experience these have the worst side effects. And can definitely increase the symptoms you are experiencing.

    Does a hot water bottle help the pain at all?

  • I really haven't thought to try and put heat on it as it never seemed muscular, but I will try it next time and see if it helps.

  • my pain isn't muscular either but i am permanently attached to my hot water bottle. I hope it helps.

  • Are you taking thyroxine? Do you have anything for low D and B12? These things could be contributing to your problems.

    Karen

  • No and no. I am awaiting my follow up tomorrow after my last blood test results, so that may be addressed then.

  • You need to address these. Good luck.

    Karen

  • Don't be fobbed of with a fibromylgia diagnosis. Ask for a trial of thyroxine. Ask for your thyroid antibodies to be tested and start on D and B12, especially if your doctor doesn't help with these.

    Karen

  • Well I have RA and my mom has RA and Lupus and my daughter Lupus. When first reading your post, it sounded like what my daughter goes through with Lupus. The red hot spots and the chest pain, mom had the red face and my daughter had both.

    A few years later my mom was having a continuous cough, that wouldn't go away. I don't remember if her throats was sore. They did a lung biopsy and found she has frybosis of the lungs.

    Not saying that is the same as your symptoms.

    We all don't show in our blood work, we all had the Vectra test to get our diagnosis.

    I wish you well. Get a Vectra test!! Have they taken biopsies of the tissue. Remember we are our own advocate!!

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