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Chronic illness making me very depressed

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Posted 4/12/2015 9:48 PM (GMT 0)
Hi,

This is my first time posting on this subforum. I have been sick since I was 19. After many years I was finally diagnosed with Lupus. I have been able to handle my lupus for the most part, learning to live with it.

Fast forward to September of 2014. I begin feeling not like myself, having digestive issues, constant 24/7 chest pain and being terribly short of breath. At the ER no one would take me seriously and accused me of having panic attacks. My primary didnt know what to make of me. My condition got worse to the point of not being able to eat. When I try to eat it feels like I am choking as I have that food stuck in throat feeling. When this first started happening back in January it was very scary. I went to an ENT and tried to explain to him how I couldnt eat. He looked at me like I was nuts, admitted that my throat was irritated but had no other advice. I finally called a gastro doc on my own and set up an appointment. I was finally diagnosed with GERD, Hiatal Hernia and esophagitis back in March.

Even after medications, not eating anything that has any flavor at all or is too hard to swallow (if I do I pay dearly for it) I am still sick every single day. My throat feels like fire when I wake up in the morning, its in constant pain all day long, after I eat I have to run for my white thick liquid medication as I feel like I have food in my throat if I dont, even then sometimes it doesnt go away, I am short of breath on and off, today I almost was going to go to hospital it was so bad but I just reminded myself how I am treated there so I stayed home. I get chest pain some days it feels like im being stabbed. I have had to learn sleeping while sitting up on the couch. I cant take this anymore. I dont want to sound whiney but I have zero confidence in my Dr who seems to not care and not be all that knowledgeable.

How has this affected me? Its beautiful outside today and while I was invited to go on a nice walk in the park instead I am sitting here typing this. I use to make dinner every night for my partner now I cant and when I do muster up the strength its a boirng uninspired dish which I cant have any of. Before I got sick I was a majors foodie, my life was food. I cant clean my house I get too tired and out of breath. I am afraid to eat, I get such anxiety because of the choking feeling. Socially I do nothing. I use to take my mom out for lunch once a week now I dont. I have only been out to eat three times in past 4 months all three times I got terribly sick from it. Me and my mom are supposed to go on our annual birthday trip and I am thinking about canceling. I fear my partner will leave me once he grows tired of being with a sickly person everyday. I feel ugly because I lost so much weight I only weigh 84 pounds. People make comments about what a "peanut" I am. None of my clothes even fit anymore. I miss my old life, the old me.

I know everyone is probably tired of reading my sob story by now but what hurts me the most is I was finally happy. I didnt have it easy growing up my father was abusive and my mom was addicted to drugs. I did my school work on my own, I paid for college on my own, I bought my car to drive to college on my own. I dated my high school sweet heart throughout college only to have him cheat on me at the end and leave.After years of being alone I finally found the love of my life, my partner who I live with. We are buying a beautiful house together in a and I am not excited at all I guess because of how I feel. People say to me you dont seem excited so even they notice. I just feel like for once everything was going well and I was happy but this happened. Sometimes I think I am just destined to be miserable. I keep telling myself other people have it much worse and I will feel like myself again but as everyday passes I believe it less and less. I dont want to live like this.

Wow that was long. If anyone actually read all that thank you. I just posted to get all this out. I feel like people around dont really understand.

Post Edited (LAWCHICK) : 4/12/2015 4:03:25 PM (GMT-6)

Posted 4/12/2015 10:35 PM (GMT 0)
Can you see a different ENT, or go to a learning hospital? Do you think it may be some auto-immune type thing? The fatigue and the tightness in the chest reminds me of fibromyalgia. But there are a lot of illnesses that have those symptoms. I go with what I feel familiar to. Which I have fibro, so that is the first thing I think of.

There is another person on the forum who had esophagus issues. She had trouble swallowing too. I can't remember what it was called that she had.

Can you drink shakes or malts to try to put on some weight? You need nutrition. Maybe some type of protein shakes or something. You do need to try to be healthy. If you are not, then you are going to spiral downward.

Go for the walks when you can. It is really good for you. Both physically and mentally. It kind of clears your head.

You have done a lot of good things for yourself. There is no reason why that shouldn't continue. Be happy for the house. A lot of people can't accomplish these things. You did...

I hope that things get better for you.

Welcome to the depression forum.

Hugs, Karen...
Posted 4/12/2015 10:54 PM (GMT 0)
Hi Lawchick. Welcome to the forum. I'm so sorry to hear of your troubles. Seriously, like our physical stuff isn't enough, then this depression settles in on top. Have you asked your doctor about meds for the depression? Sometimes we need a little help. Sometimes hospitals have support groups, you might want to see if yours does. Your county health department might have info on one near you. Have you posted on the Lupus forum? Perhaps someone there or in one of the other forums can give you a direction on your symptoms.

My mom had a hiatal hernia and gastric ulcers. I remember how uncomfortable it was for her. I also have a friend that has to have her esophagus stretched about twice a year. Strictures I think she called it. My brother and my niece both had pyloric stenosis. Those issues all 'stink'. I hope you find the answers you need. Meanwhile, keep posting here. It's good to let it out!
Posted 4/13/2015 12:02 AM (GMT 0)
Thank you both for the replies. Gettingby I do have an autoimmune disease which is currently active as my C3 & C4 levels are both low (basically means my immune system is fighting) however my Dr doesnt feel they are low enough to cause concern. I have been drinking ensures but even drinking gives me issues. I was just drinking water and twice it felt like my esophogus closed up on me as I was swallowing. I know that I have accomplishments but I feel like they dont matter anymore. I worked so hard to end up like this, physically falling apart.

Pitmom I havent asked because I dont want to be on one more medication. Hiatal hernias can cause so many problems but for some reason my gastro acts like its no biggie.

I just feel like something really bad is going to happen. I dont know what its going to take to get doctors to understand how sick I am. Even when I lost 16 pounds in a couple months, was weak and not eating no one did anything. I think at that point I should have been in the hospital having testing done.
Posted 4/13/2015 12:03 AM (GMT 0)
One more thing...I was just over in the chronic pain forum and saw a post on another thread by someone who said that magnesium has helped him with his reflux. Not sure if this is the white thick liquid med you were referring to but if not, you may want to check it out.
Posted 4/13/2015 11:21 AM (GMT 0)
LAWCHICK, Karen (Gettingby) directed me to your post as it sounds like you may be experiencing something that I have. First, have any of the drs performed an upper endoscopy? Have there been any biopsies done? Which medications do they have you on?

When you have this choking sensation, is it because you can feel the food "stick" in your esophagus or is it a sensation of your esophageal muscles just not working? The chest pain that you get is it in the center of your chest?

I have a couple of digestive issues, some are autoimmune. I have esonophilic esophagitis. That is a condition where white blood cells react to my esophagus as if I am having an allergic reaction. My esophagus swells shut. Its not a quick swelling and I usually try to wait as long as possible to call my dr. I wait out the swelling by going to a soft diet until I can't even swallow pudding. When it is swollen I feel food get stuck. Once food gets stuck and you can't get it out then it hurts. My esophagus swells at my lower esophageal sphincter. When food sticks it feels like massive chest pain that gets worse the longer I have a blockage. I have been tested for all allergies and everything has been negative.

My first recommendation is to see a gastroenterologist and request an upper GI. Tell them about your choking and that you are concerned. Its possible you have a stricture, which is a ring of tightened or rigid tissue. Let the dr that you'd like biopsies for any strictures found because that will help narrow down the cause.

If you aren't already taking an acid reflux medication I recommend you get on one. I don't have reflux but the medication helps with esophageal irritation. If you have what I have, there's not anything you can do about the throat pain. My throat hurts all the time, but is at its peak in the morning. I also get periods where I lose my voice. I take Prilosec, which you can get over the counter.

So, your first step is to get some Prilosec (or something similar), get in with a gastroenterologist and get that dr to do an upper GI. While waiting, try to make sure you are very thoroughly chewing your food (I actually count so that everything is chewed 85 times) and if you feel like something is stuck in your throat take small sips of liquids and don't eat anything! If there is a blockage eating more food will make things worse.If you feel like food is caught, its causing lots of pain, and its been stuck for an hour or so then you can go to the ER. They will use a scope to look in and remove any blockages.

Feel free to email me with any other concerns. I know how frustrating it is to not even be able to eat. Its overwhelming and scary. Choking is a terrifying sensation. There are things to help you, though. The first step needs to be locating a diagnosis.
Posted 4/13/2015 12:28 PM (GMT 0)
Thanks AV, you are such a sweetheart!!!

Hugs, Karen...
Posted 4/13/2015 1:46 PM (GMT 0)
well the whole truth of the matter is that the docs don't know that much and to sort of cover for themselves they say it is nothing. i am very sorry you are having these problems and hope things improve for you.
i hope your partner will see you through, just keep hammering at the docs and someone may be able to help you down the road

I call i medical mafia roulette. you got to see the right doc and some of them are very dedicated and excellent but many of them are not
Posted 4/13/2015 2:48 PM (GMT 0)
many healing thoughts i send. welcome from me. would have said g'day sooner but i am a bit tired.
Posted 4/13/2015 3:36 PM (GMT 0)
One step at a time.

AV has good advice for you. Deal actively with the medical problem--that moves you into action-mode rather than passive depression. Once you get the condition to a manageable point--start seeing a therapist. It is normal to mourn our health. But it is not good to mourn our life--because we all still have our life, despite chronic conditions. What you need is a good doctor on your side and then a good therapist to work with you.

Be well.
Posted 4/13/2015 4:06 PM (GMT 0)
Lawchick, welcome to the forum.

You symptoms could very well be a from a actual virual/bacterial condition.

However, I am going to throw the following into the mix. I don't want to be a downer, however, not being able to swallow or eat is a common sign of repressed trauma memories.

I know this first hand. I repressed memories for 28 years.

Perhaps you can consider therapy and see if it helps you. To me it sound like you have something going on that needs addressing and wants to come out.

I wish you peace and comfort.

Trina
Posted 4/13/2015 9:14 PM (GMT 0)
Hey LChick...Just want to offer some moral support as you seek answers.  You've gotten good advice, but Joan always cuts to the chase.  I like that.  I don't sugar coat a turd and convince folks it's a truffle.  Joan doesn't either.  She's a good lady who has suffered (and continues to suffer) with intense pain.  I gather that she, like I have been screwed over by these Gods in white coats. Chronic pain should not have to be this HARD for those of us who suffer.  And suffer we do.  There are good suggestions given here, by some who post also on the CP Forum.  Much can be learned there about how to deal with your pain and emotions, finding a way to new normal.

We have no choice but to continue to search for the Holy Grail of medical care.  There are some good doctors out there, but often hard to find.  My history has been that some doctors are quick to label my physical issues with "depression".  Y-E-S...I suffer with depression that is no doubt intensified the dark feelings.  I have spent 2-3 decades of my life fighting one physical battle after another.  I had GREAT docs until they retired.  I've yet to recover the loss, but I am continuing the fight.

You can (only if you wish) read my post called "Scarlet Letter E".  Type that in the search at top and it will show up at length, in the Chronic Pain Forum.  I do most of my posting there, as my saga is too graphic.  It's not pretty...and seems to be triggering for some.  It IS lengthy, but will show you that YOU CAN PREVAIL.

I don't have your problem with your esophagus, but I empathyze.  I spent 3 years in the floor, throwing up NOTHING...dry heaving.  It affected my vegas nerve, which is still to this day, sensitive.  It can have a rebound effect.  The weight loss can be debilitating.  Not only does it starve you body, it starves your brain.

I am no doctor, just a student of life working toward my PhD (pain has debilitated) my body and my mind.  Please get nutrients into your body.  Your doctor can give you IVs to strengthen you.  It saved my life more than a few times.  Don't allow yourself to get too weak to FIGHT for feeling better.  Try to contact a teaching university.  Beg, borrow, deal...Don't take no for an answer until you get a good GI, or even a GP who actually listens and can refer you to new GI.

Hugs~Dixie

 

Posted 4/13/2015 10:12 PM (GMT 0)
I'm so sorry that you're dealing with such terrible physical health issues, I know first hand how much harder it makes daily life when your physical health is poor and it's sad that it ends up affecting us so much emotionally as well.

You sound like you do have some really great things going for you in your life (I wish I could say the same) I've never had a great life and no accomplishments to be proud of and then developing physical health issues myself in my early 20's just made me feel like my whole life will be too big of a challenge for me to handle and so far it has been.

You have many positive things to focus on (unlike myself) I think you can overcome the way you're feeling even with your health issues, it sounds like you have a lot of great support and that's a good thing and the reason why I think you'll probably be able to get a handle on your depression...I don't think depression likely ever goes away for good but I bet you can combat it better than you think...even with your health issues, reading your post I sense a lot of strength in you, I'm sure you don't feel that way so much but I have a good feeling about your situation and I don't know why, but I do.

Keep plugging away with your therapy help and take advantage of the great things you do have going for you in your life...wishing you the very best!
Posted 4/13/2015 10:31 PM (GMT 0)
pb4

I challenge you thought process. We are all here for a reason. We do not have to have 'great success' in life to be worthy. Just being connecting we people on a daily basis is enough.

You never know how far a simple kindness, such as holding a door for someone with a smile, saying thankyou and looking a cashier in the eyes, or anything that you may do, will effect a persons day. The ripples that we start through a compassionate act gone on for a long time.

I dare you to sit down, perferably outside, and write some of the kind things you have done in the last week. and/or some of the simple things you are grateful for. Like hot water or TP.

Here is a quote from THE WOUNDED HEALER:

"Making one's own wounds a source of healing, there fore, does not call for sharing of superficial personal pains, but for a constant willingness to see one's own pain and suffering as rising from the depth of the human condition that we all share"

You may suffer more than others, however, you are stronger than others, as evidenced by reaching out and sharing here.

Peace and strength
Trina
Posted 4/13/2015 11:11 PM (GMT 0)
Hi Trina,

I guess I feel like if I cannot help myself then I can at least try to let others that are in the same boat as me have some reassurance the way they're feeling is similar to the ways others are also feeling (be it for similar or different reasons) but I it never really makes me feel like I'm helping anyone beyond letting others know that I can relate to them. I'm not giving them much advice of any kind really, more like just letting them know they're not alone in how they're feeling. I don't feel strong at all, I simply feel like I have some feelings in common with some other people.

I never look past any kindness I put out in the world, probably because when I'm kind and helpful to most people around me, they end up hurting me anyway, but I guess it's just my nature to still basically be kind and do things for others....my husband doesn't like that I'm going to therapy because he makes everything about himself and expects me to make everything in my life about him and him only...he's a control freak among a million other terrible personality traits/issues etc that he has--he's majorly self-absorbed and only pretends to be supportive until he starts thinking that if I follow through with going to therapy to help myself then what that partly entails is also trying to find a way to leave him, but he sends a lot of mixed messages too so I can never win. He likes me feeling vulnerable and isolated so that he's always the only focus and concern in my life first and foremost, I don't even get to come second, he doesn't want me to be my own person or feel secure but yet at the same time, with him stripping everything and anything positive (unless it has to do with him of course) he still expects me to be this great person (for him only, not anyone else) his expectations are too high for anyone to abide by. I feel empty, so I'm just trying to fill the emptiness with coming to HW and sharing.

I told my therapist that at this point all I want is to learn how to cope with my misery because I don't expect her or anyone including myself to ever be able to conquer my misery, I know there are no miracles out there when it comes to stuff like this, but if I can at least learn how to cope better than I have been for decades maybe it'll take some of the stress away.

Thanks for your kind words though, maybe someday I'll allow myself to see me the way you see me (strong--that I doubt I'll ever see myself as)
Posted 4/28/2015 1:06 AM (GMT 0)
Thank you everyone for your replies. Dixie I do think I have issues with my vegus nerve especially after eating large meals. I havent ate a large meal in 5 months but when I did I would get very faint and dizzy like I was going to pass out. I think that was from the Vegus nerve.

PB4 I hope you feel better and thank you for the support. I guess I just feel like my accomplishments do not really matter in the end because there will always be something to ruin them. Is there any hobby that you can put sometime into? I have always like to write and make pottery so I really want to get back into that.
Posted 4/28/2015 1:22 AM (GMT 0)
LAWCHICK,

I've never really had any hobbies, have no special talents either...sadly I've spent so much of my life worrying about others I never gave any time to myself to discover things about myself so I assume there isn't much about me to discover, maybe I've been depressed longer than I realized....I don't know but I wish I had accomplishments to at least have something about myself to feel good about, maybe someday.

I'm glad you have things in your life that are for yourself, that's one of my big issues along with a lot of other ones but therapy is trying to change that so we'll see. I'm glad you're going to rekindle your hobbies and I hope it helps you find peace that you're searching for.
Posted 4/28/2015 1:26 AM (GMT 0)

Angelic_Victory said...
LAWCHICK, Karen (Gettingby) directed me to your post as it sounds like you may be experiencing something that I have. First, have any of the drs performed an upper endoscopy? Have there been any biopsies done? Which medications do they have you on?

When you have this choking sensation, is it because you can feel the food "stick" in your esophagus or is it a sensation of your esophageal muscles just not working? The chest pain that you get is it in the center of your chest?

I have a couple of digestive issues, some are autoimmune. I have esonophilic esophagitis. That is a condition where white blood cells react to my esophagus as if I am having an allergic reaction. My esophagus swells shut. Its not a quick swelling and I usually try to wait as long as possible to call my dr. I wait out the swelling by going to a soft diet until I can't even swallow pudding. When it is swollen I feel food get stuck. Once food gets stuck and you can't get it out then it hurts. My esophagus swells at my lower esophageal sphincter. When food sticks it feels like massive chest pain that gets worse the longer I have a blockage. I have been tested for all allergies and everything has been negative.

My first recommendation is to see a gastroenterologist and request an upper GI. Tell them about your choking and that you are concerned. Its possible you have a stricture, which is a ring of tightened or rigid tissue. Let the dr that you'd like biopsies for any strictures found because that will help narrow down the cause.

If you aren't already taking an acid reflux medication I recommend you get on one. I don't have reflux but the medication helps with esophageal irritation. If you have what I have, there's not anything you can do about the throat pain. My throat hurts all the time, but is at its peak in the morning. I also get periods where I lose my voice. I take Prilosec, which you can get over the counter.

So, your first step is to get some Prilosec (or something similar), get in with a gastroenterologist and get that dr to do an upper GI. While waiting, try to make sure you are very thoroughly chewing your food (I actually count so that everything is chewed 85 times) and if you feel like something is stuck in your throat take small sips of liquids and don't eat anything! If there is a blockage eating more food will make things worse.If you feel like food is caught, its causing lots of pain, and its been stuck for an hour or so then you can go to the ER. They will use a scope to look in and remove any blockages.

Feel free to email me with any other concerns. I know how frustrating it is to not even be able to eat. Its overwhelming and scary. Choking is a terrifying sensation. There are things to help you, though. The first step needs to be locating a diagnosis.

I had a endoscopy done and as far as I know biopsies were taken. The findings was acid reflux, hiatal hernia and irritated esophagus. When I get the chest pain sometimes its tight other times is a sharp pain. It feels like I have food stuck in my throat, some days worse than others. Today I have felt like I have food in my throat all day. Also sometimes my throat feels tight. I dont know what to do anymore. If i went to the ER everytime I feel like there is food stuck I would be there everyday of the week. Right now I am on dexilant the highest dose still no relief. I am just trying to get use to feeling this way. I know that the constant coughing and clearing my throat isnt helping with the irritation but I cant help it. I also hate eating now which is making gaining weight very difficult.

Thanks again for your reply I appreciate it.
Posted 4/28/2015 5:41 AM (GMT 0)
Have you gone over the biopsy results with your gastro specialist? Were there strictures present?

I take omeprazole and flovent. I swallow the flovent and that is supposed to help keep my esophagus open. On average, I have 2 dilations a year. Have they sent you to an allergist? Most people with my issue have a related allergy. Their problem is greatly reduced with dietary changes.

Even without an allergy, I've been checked a couple times and done many elimination diets, I have made dietary changes. Beef and pork and certain veggies are more difficult to swallow so I have restricted them. Too much bread can be difficult. Lots of fluid when eating helps, too. I count how much I chew, too. Its all about making this as easy on my esophagus as possible.

If something's stuck in your esophagus it does need treatment. I give food between 3 - 4 hours to pass on its own, unless its causing lots of pain (that's the horrible stabbing chest pain). Medicines I only give a couple hours. Leaving something in there can cause more damage. Sometimes the er can give you a muscle relaxer that can help something clear on its own or they can induce vomiting depending on its location in your esophagus.

My advice is to sit your gastro Dr down and say you need a game plan. Discuss meds, what they want you to do if something is stuck, the quickest way to get in with them, and what tests are still necessary.
Posted 4/28/2015 7:00 AM (GMT 0)
Welcome to the forum. I too struggle with a chronic illness and made my depression almost triple, along with anxiety. I feel as if the worse the symptoms get, the worse the depression gets. And I know it's a hard pill to swallow. It does get better, you learn to live with it(harsh I know) but that's how I did. I was a broken mess and being without meds doesn't help. I learned that a good diet helps and keeping yourself active and with friends helps so much. Even if you feel disgusting( which your not my love) you should have a friend over if you feel embarrassed to leave the house. The comfort of someone who cares is so incredible. Also if your worried about your partner leaving due to having to deal with you being sickly, that's horrible and they might not be a good person for you. You didn't ask for it and theirs nothing you can do to help it. Remember your not a victim, your a patient. Don't let others look down upon you or anything. You going through things that they don't understand. It'll get easier, the forum has helped me a lot. Check out other forums on this site in the catagory your disease fits in. Lots of tips and maybe others struggling the same way

Good luck xx
Posted 4/28/2015 2:38 PM (GMT 0)
EVERYONE on this thread.

I understand the downers of chronic illness and the pain, suffering, depression and anxiety that goes along with it.

However, I have to say, enough time has been spent here marinating in the muck. We all need to vent, this is true. However, we need to spend more time being proactive and kind to ourselves.

We are NOT our diagnosis's. They are just part of who we are. It is something we have. They do not rule us.

It takes hard work, constant daily battles, however you can win these small victories. People do it every day. The more you win, the stronger you become.

Learn skills:

Controlled breathing for anxiety and pain reduction; yes it works I use it.

Mindfulness; reduces depression and pain

Meditation again can reduce pain and tension anxiety, and it does not have to be the 'om' kind

Learn 'Self-kindness and Self-compassion' many books on the subject. Hard to wrap you head around, once you do, it is like finding a best friend.

Sit quietly, think of something that you always wanted to do, but didn't. I don't care who told you you couldn't. Then try it. I was told I was to stupid to play the piano. My whole family plays it. I have begun to teach myself the piano, took some lesson, the teacher changed and that did not work out , so I am back to working on it myself. I am making head way. Will get another instructor soon.

I wont be a Liberachi, but I will be able to play a few hymns. To me that is a major victory.

Start a gratitude journal, everyday write something you are happy to have or thankful for. No matter how small. You will be surprised how long your list gets week after week.

I urge you all to try. Engery is precious when we are down, using it to ride the roller coaster back up, is better then digging the hole deeper.

I wish you all Peace and strength
Trina
Posted 4/28/2015 3:41 PM (GMT 0)
Thank you Trina,

It is so easy for us to get caught up in the muck with depression and chronic illnesses. We have to fight and try to be positive. All the things that you are suggesting can help all of us. All we have to do is try.

Hugs, Karen...
Posted 4/28/2015 4:31 PM (GMT 0)
I agree Trina, we that suffer with chronic illness can easily get caught up in our illness bringing us so down about everything in life because it's too easy to relate most if not all our emotional/mental issues to our health issues, but you're right, we need to keep things in perspective, that's what it all really boils down too and if we need to do a little extra work more often like mindfulness and meditation and even yoga then that's just the way it is, at least it's helpful and really that's what we all need is any ways to feel better so we should be glad we have options to help us combat things especially since we may have a little extra to combat dealing with chronic physical issues.

I'm choosing to use perspective as part of my healing process too, because honestly I believe that two people can be going through very similar and almost identical issues and one person's perspective of how to deal can be completely different from the other person's so it's really a matter of putting things into perspective that relate to us individually in order to combat the depression and anxiety we've developed.

Perspective may be a big key to healing and I want to heal everything about myself that I have the control to heal, I don't want to let life and situations and experiences beat me up anymore, I don't want to beat myself up anymore, it's not getting me any better it's made things worse and I want better not worse so I'm starting with changing the way I perceive things...I have hope that it's a realistic way to learn how to cope and deal with life and whatever negative it throws my way.
Posted 4/28/2015 4:55 PM (GMT 0)
Awesome!!!
Posted 4/28/2015 7:22 PM (GMT 0)
Sorry, I certainly wasn't trying to add to anyone's depression. I always feel better when I'm taking a proactive stance. That was what I was trying to do. Sorry.
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