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Desperate and dont know what to do!

Posted , 9 users are following.

colleen73
colleen73

It all started 10 weeks ago when i went to the doctor, he thought i was suffering from a chest infection and gave me antibiotics and steroids, got no better and started bringing up food in my throat, he thought the steroids were to blame and said i had reflux. Since then ive had 8 weeks of hell, he treated me for h pylori (without doing a test i may add) to no avail. Ive had a whole load of symptoms that i wouldnt have even thought possible with reflux. Pins and needles and muscle spasms throughout body, adrenaline rushes, eye strain that causes weird feeling in my head, dry mouth, white foam, difficultly breathing, lump in throat, rancid bowel movements, i could go on. Ive been to get an endoscopy last week, and they said i had an inflammed stomach, gastritis and 2 polups that theyve taken biopsies from. I feel so down, this isnt me anymore, i lost over a stone and everytime i go to the doctor they just say its anxiety (which ive never suffered from before). Im convinced theres something wrong at the top of my chest that theyre missing, sounds weird but im getting funny feelings throughout my body when i swallow and struggle when breathing in. I feel like im going out of my mind, i feel no one is listening to me and im really scared. Looking to here for a bit of support. Any advice and reassurance would be gratefully received. Sounds silly but i really feel like im goin to die sometimes :-(   colleen

1 like, 43 replies

43 Replies

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  • shellmybell
    shellmybell colleen73

    Posted

    Hi Colleen,

    I'm so sorry you've been through the medical meat grinder. It's one of the most horrific experiences of my life to be treated with such disrespect from these Doctors. I can't give you answers but I can give you support. First off, it's not in your head and it's not "mind gut". When the medical doctors can't find exactly what's wrong or how to treat you they go right to the "mind gut" prognosis, it's horrible! I have been to seven GI doctors and many other specialists. The last doctor finally found bile but doesn't know why. Meaning my Galbladder is supposedly working right. I have other issue that came along with it... Horrible throbbing salt burning, I call it frying, in my tummy, chest, throat, and my mouth. My heart has never been the same since they put me on high doses of acid blocker and nerve drugs which only made me sicker, know one wanted to listen. I also have really bad back pain. And now muscle and joint pain. I went from 150lb to 107lb and I'm 5'9. I've managed to put 20 pounds back on but it has been a lot of work because of the burning.

    I am still searching after 19 month for some kind of reliefs, help. It's been the hardest most excruciating thing I've ever been through. I've never had these issues my whole life. I am not giving up, especially when I see so many others with similar issues. Never the same as mine, but some similarities. I figure we're all in this together and we somehow got to blaze a trail for what I'm seeing to be a huge medical trend!! You are not alone, not at all. I wish I had the answer to help you feel better and get on with your life. Xxx's

    • colleen73
      colleen73 shellmybell

      Posted

      Hi there shell, thanks for your reply. My heart seems to race also, its scary. Im crying all the time, i have 3 boys and theyre distressed seeing me like this. I honestly dont know what the tablets are doing to me, are these causing things? Theyve had me on anti depressants (which i ended up in a+e with, nearly collapsing) valium (which i took for a couple of nights and stopped) I just feel something isnt right, i feel as if im not control of my own body, light headed, brain fog. I really am at the stage i dont want to eat but know i have too. Ive never been so scared. You sound like youve been through the mill, thats awful youve been suffering for 19 months, surley there is something they can do. I just find the whole process so slow, no wonder people go private xx
    • shellmybell
      shellmybell colleen73

      Posted

      I completely understand how you are feeling. My heart goes out to you and your children. In sending you a loving hug. My body reject all medication. I can't even take anything for the pain. It only makes everything else worse. I've gone to a private doctor at Stanford but couldn't afford to keep going. I've tried many different modalities. Still search as we speak. There just has to be a way!! It been my motto the whole time. Don't give up. Start writing down everything that is happening and when. It will help you keep it all in order so it doesn't sound so jumbled when your trying to tell your story. Don't give up. Keep going forward no matter what. I hope you have support of family. It's hard for people to wrap their heads around something like this. They want to help but don't know how. Do your best to ride out the worst times... I know, it's easier said than done. Blessing to you and your family. You are in my thoughts and prays. Hugs. Please let me know how your doing.
    • shellmybell
      shellmybell

      Posted

      Oh, and yes... I two have cried a river of tears and been frightened. Who would be! Your whole life changes in an instant and you can't find help or relief. I pray there are answers and healing around the corner. Hugs

    • colleen73
      colleen73 shellmybell

      Posted

      aww thank u so much, this group might just be what i need, i might not feel so alone. Yeah my family are very supportive, mind you i dont think they understand it all though xx
    • shellmybell
      shellmybell colleen73

      Posted

      Those have been my exact words, Colleen..

      We will find a way. Warm hugs, honey <3>

  • ted41159
    ted41159 colleen73

    Posted

    Hi Colleen

    You now have 20 replies so there is not much I can add to the advice given but what I can tell you I too went through the  " you have anxiety " exercise and was given pills for it.Which after taking several times I refused to take it. So just persist in refusing to accept its an anxiety problem. In the end they discovered I have an Hiatus Hernia and I am now taking Lansoprozole and Ranitidine daily.How life changes as its only after taking them for some time i can actually spell those names.Until about a year plus ago at the age of 65 I was never ever ill so when this all starting happening I had all those dreadful thoughts of it being something terminal as you might be thinking too so I just want to say that there are far more chances of it not being rather than it is so think positive. Now just before I o off to sleep I tell myself that I am well as the mind is a powerful thing esy when we are asleep. Best wishes and in my experience this forum is made up of people that want to help each other so your now in the right place.

    • colleen73
      colleen73 ted41159

      Posted

      hi ted, thanks for your reply, i too are never ill, so i think this has come as a slap in the face. Yeah youre right ive thought ive had everything under the sun in the last 10 weeks. The doctors think its anxiety causing the symptoms, not the symptoms causing the anxiety as i know it is, im not an anxious person, granted whats been happening to me has scared me to the core right enough. cant believe acid reflux can cause so many things and cause so much misery. I do hope youre keeping well. colleen
  • julian38254
    julian38254 colleen73

    Posted

    Hi Colleen. Hope you're feeling OK. About six months ago I was searching these forums as I was suffering really bad acid reflux. I had been on omeprazole for about a year, had the tube down the throat which revealed inflammation but not any thing else. Was due to have a tube in the other end which I wasn't looking forward to. In the meantime I suffered a lung infection and was prescribed anti biotics. After my lung infection cleared up I felt that my stomach condition had improved so maybe I had some sort of infection all along. I still had some occasional nausea symptoms and my stools still seemed to contain some kind of mucus which had been the case for some time. I'm a big tea drinker which I always have with sugar. Over Christmas I ran out of sugar so used a spoonful of honey instead. After a couple of days of this I noticed my stools contained less and less mucus and my stomach was feeling much better. I have now been doing this for about six weeks and feel great. I have much more energy and no symptoms at all. I am just using pure honey from a squeezy bottle, not the expensive manuka. Might be just a coincidence but worked for me. Well worth a try, I hope it helps and you feel better soon.
    • colleen73
      colleen73 julian38254

      Posted

      hi julian, thank u for your reply. Im glad to hear youre feeling better thats great. I will give that a go, ill give anything ago. Im just finding everything thats happening a bit scary. Im not usually ill so this has really shook me. Im amazed at how many people actually have it. Im glad ive joined this forum and hopefully will get lots of advice to try and i might not feel so on my own.  colleen
    • julian38254
      julian38254 colleen73

      Posted

      Fingers crossed it will work for you. This time last year I actually quit a very well paid job because I was feeling so bad I felt I needed to take time out to rest and try and get better. My stomach was doing all sorts of strange things, I was bringing up a lot of white foamy liquid daily and was really at a low ebb. The only reason I have come on this forum is because I remember how much I was affected and wanted to share this in the hope it might work for sone one else. I started off having a teaspoonful in my first cup of tea of the day but now have it in every one. I would be really interested to see if it helps. I wish you all the luck in the world
    • colleen73
      colleen73 julian38254

      Posted

      thanks julian i hope so too. I too bring up alot of white foam, it isnt nice 
  • papote53
    papote53 colleen73

    Posted

    Hi,

    Is not that you have Anxiety and Gatritris, is that the Gastritis created the Amxiety and it worked backwords as wel.  One creates the other. I have both as well and never had anyhting before this-  Now, be.  carefull with These reflux/gastritis medications, never stop them at once. Just slow down to one every other day and then one every other 3 days and then stop.  It takes weeks to stop them. Now, as for Gastritis They gave me 3 diffrenet and they did nothing for me as well.  As for Anxiety I take Diazepam 5mg twice daily and it heps with the extra sysptoms to get from anxiety abd it sure helps you relax and even sleep, but it does nothing for the pressure on the chest created by gastritis.  So I just started a new diet, low in Gluten/Dairy and 1/2 cup of botato juice 30  minutes before meals.  I have been doing this for 4 days and it appears to be working.  My Psychistris said once the presure on chest is gone he wil take me off Diazepam which I will do slowy as well.  I had many other symptoms like dizziness all day long for many months. Biofeedbacl helped me with this.  Sure, I was cleared by the Pulmonologist and Cardio that is not chest or heart related.  Food is a Big factor here so go and see a nutritionist because regular Dcotrs know nothing about this and muc less want to do anyitng with this because if people knew just by eating better they can get better that will take 50% of their juicy montjy check.

    • colleen73
      colleen73 papote53

      Posted

      hi papote, thank for your reply, im amazed at just how many people have anxiety with reflux, i honestly thought i was going crazy. Did you get alot of pressure in your head? i seem to be getting that i dont understand why. I see the nurse 2moro to get bloods taken so ill ask about a nutritionist then. The anxiety is an awful thing.
    • papote53
      papote53 colleen73

      Posted

      Actually I did but in my case it was actually Chrionic Sinus which I didn't know I had.  They also told me I had COPD and even Asthma but after clearance from my Pulmonologist and my allergiest which is also an Asthma Doc they concluted I don't have any of them.   No wonder I have Anxiety. ;-)  But the reflux/gastritis is closely related to Anxiety and just about everyone who has one of the 2 will get the other.  Your Gut controls your brain and your brain controls everyhitng else and that is when Anxiety kicks in which makes you think you have all kinds of symptoms (pains) which you don't have but to us they feel real .
    • colleen73
      colleen73 papote53

      Posted

      I dont feel in my body alot of the time, its so weird. been thinking i have a brain tumor also as i struggle to think this has anything to do with acid reflux 
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