Pain really taking its toll on me

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Gabby123
Regular Member


Date Joined Jan 2007
Total Posts : 113
   Posted 8/14/2008 7:12 PM (GMT -7)   
Hello everyone,
 
     I just need to post and talk.  I dont really need any advice I just need to talk to someone.  This week has been an absolute nightmare and the pain just gets worse and worse.  Has anyone ever been in so much pain they feel like they are going to keel over?  I left work early today because the pain was making me so sick and naseated.  My pain is from reflux from my stomach...my throat looks like a horror movie and it feels like one too.  I am schedualed to have the nissen fundoplication done next week to fix my sphincter valve because it is bad.  I know that may help but the damage from this illness has already been done.  I am scared to eat anything and am afraid life holds nothing for me but pain pain and more torture.  Can u imagine someone taking a lighter and burning your face?  Thats how this pain feels everyday.  Yes, I have been to numerous doctors, and no one can help me.  Been to ER too.  Pain meds dont touch the pain I feel in my face.  In my face of all places to have pain...its horrid.  I just dont know what to do anymore I am scared and lost and feel completely hopeless.  People ask me all the time how I am doing today, and it's like I dont want to say "I feel like complete hell"  so I just say Im ok, which I am not, but inside I feel like passing out.  Pain is such a silent illness, no one understands it but you.  I am only 27 and have suffered with this for over 2 years...I don't even know what its like to feel good.  I honestly have not had a good day in over 2 and a half years.  I am just extrememly depressed frustrated and wish there was an end to this torture.  Can anyone relate?  Thank you for listening
 
Gabbs 

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 8/14/2008 7:22 PM (GMT -7)   
I can relate Gabby. The pain gets so bad that you just want to curl up in a corner and cry and scream...yep been there still doing that! I am so sorry you are having a wickedly bad day with the pain and I wish that I could wave a magic wand over your head to make it go away. But I cannot and neither can you do this for me, so meanwhile I offer to you whatever support I can to help you through this tough time. If you need a shoulder to cry on mine are here.

hugssss

Scarred
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/14/2008 9:05 PM (GMT -7)   
Gabby:

We're here whenever you need to talk to someone. It just stinks to feel like crud all the time, doesn't it? I know it is really discouraging, but we have to keep hoping that they are going to develop some great new medications or treatments for us someday soon. I pray the procedure you have next week will bring you some relief.

(((((Gabby)))))

Ry

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 8/14/2008 9:47 PM (GMT -7)   
Hey Gabbs,
 
I'm right there with you, hun.  It's been so long since I felt good, like a couple of decades.  Things weren't always this awful for me, but I started getting migraine headaches when I was eight, and my knees and back started going bad about twelve.  We're talking like 31+ years, longer than you've been alive.  I can't even remember the last good day I had, it's been so long.  As far as when people ask how you are doing, tell them the truth.  Don't lie just to make them feel better...you are in pain and you cheat yourself if you don't say so.  You don't have to give the person a complete rundown of your health issues, but don't dismiss your pain like it doesn't matter or that nobody really cares.  If someone asks me something like "How are you?", I always answer: "Miserable, but thanks for asking."  It gets your point across without people immediately tuning you out, like they would if you started giving them a medical history.  It also puts a little humor into the lousy situation, and if they get a chuckle out of it, it can give your system a very brief hit of endorphins, and we need all of those we can get. 
 
I don't sleep well...  I have crazy nightmares and always wake up with major back pain.  Sometimes I just want to check out and sleep all the time, but the pain won't let me.  Some days I wish I had something terminal, since most terminal patients are at least kept comfortable during their final days.  I think it takes more courage to live with chronic pain than to slowly die of a terminal illness.  My parents are in their middle 70s, and they have to cover all the expenses my paultry disability check doesn't meet.  I can't even imagine what life will be like when they are gone and I have no financial safety net, no one to take me to DRs appointments or to run errands when I am not up to leaving the house.   My little sister and I get along for about an hour and we're at each others throats.  I can't fathom having to depend on her for anything, being obligated to her, or being stuck under her thumb.  Gosh, I gotta stop with all this cuz it's getting me really depressed.
 
Hope something I've said helps you out a little bit.  I feel your pain.
 
Leigh Ann smhair

Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ, stomach problems 
  • Divorced, 43, spawn-free 
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Impacted Kidney Stone Removed, Broken Ankle, Major Dental work(ten molars pulled, multiple cavities, root canals) 
  • Current Meds: Prozac, Klonopin, Atenelol, Stadol Nasal Spray, Lortab/Percocet, Trazadone, Buspar, Protonix, Tramadol, Visteryl, Carafate Suspension, Co-Q10, B2(Riboflavin), Remifemin(Black Cohosh)
  • PROHIBITED FROM ALL NSAIDS
  • Current Problem: Mysterious Internal GI Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


Gabby123
Regular Member


Date Joined Jan 2007
Total Posts : 113
   Posted 8/15/2008 1:19 PM (GMT -7)   

Thank you all for you replies, it helps me so much to know that you all care.  Leigh ann I am so sorry you have been suffering over 31 years, that is just awful.  {{{HUGS}}}}  And hugs to everyone else who replied too that is suffering and in daily pain.  I had such a horrible night last night, I was crying, couldnt sleep...my mum came in and gave me some zoloft.  Woke up about 4 in the morning and started puking.  I don't think I have ever felt that sick in my entire life.  I really wish I could just get my entire stomach taken out.  I really dont care anymore, after 5 years of gastroparesis I can't handle being sick bloated and naseous everyday, and then the reflux on top of that.  On a scale of 1 to 10 my digestion works at about a 2...its really that bad.  Its so hard because everyone always tells me, "Oh, but you don't look sick"  and that really bothers me, because on the inside I am screaming.  It's hard for me to explain to people what is wrong with me because its not something you can see....its a silent illness.  I wonder what it is like to have my body function properly - I honestly have no idea what that must be like, its been years.  Things like getting married and having a family aren't even something I think about anymore.  How could I possibly ever even have a relationship with anyone like this?  Who would want someone who cant even eat?  I dont want to think about that cause it just depresses me but do any of you ever feel so alone with your illness/pain and its hard to have a relationship because of it?  Thank you so much for your replies I hope you all feel better

-Gabbs 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/15/2008 1:56 PM (GMT -7)   
Gabby,
Yes, yes, yes, yes! I so understand not just the pain but the aloneness, and loss of dreams for one's future. Even though I'm in my upper 50's, I still had hope I might one day marry again and at least share life with someone. But you're right - how do you even contemplate meeting people when your health (and for me finances) limit what you can do. I can't even sit through a movie. So you're right, it gets depressing so I try not to think about it either. And I look for people here like you and Ry and others who do understand. Sometimes I think the "pie in the sky" thinking of having someone say oh, don't worry someone will come along, just makes it worse, ya know? If by some magic I stumble into something, great, but I don't even have the energy for anything like dating.

Sometimes I think we just have to find ways to make peace with "what is" and not always be hoping for a different future. But boy do I know that's easier said than done, especially these days.

Hugs,
PaLady sad

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/16/2008 9:09 AM (GMT -7)   
Gabby:

I just want to second PaLady's comments to you. She and I are definitely right there beside you in this battle to struggle through this monster of chronic pain and disease that has taken over our lives and now seems to even be taking away our dreams. I know exactly what you mean about how much those off-hand comments hurt. People think they are being helpful and I really do think they mean well, but there is just no way they can understand what it is like to be in this position. I struggle sometimes even within this forum to not be envious of the people here who have "hubbies" at home to take care of them and help pay the bills and take care of the dishes and the laundry and such. And then I feel almost sick with disappointment in myself that I could begrudge anyone the blessing that I myself want so much to have. sad If I let myself get to focused on it, well a vicious cycle can begin quickly.

Finding this forum and meeting people like PaLady and you and so many others here who have taken the time to encourage me and give me advice when I've been at my lowest points has been my lifeline this past year. Even though we cannot escape (physically) the torture of our current reality, this place has given me a chance to fellowship with others who truly do know, REALLY KNOW how I'm feeling, a chance to sometimes encourage someone else - which makes me feel worthwhile again, and a chance to laugh and be silly on occasion - which we all desperately need!

I wish so very much that I could take your pain away from you. I can only imagine how awful things must be with such an illness. I know from my personal experience that people can be stupid and insensitive and say the most awful things without thinking. (I have nausea issues - nothing like yours, but I've struggled to maintain my weight, and it just amazes me when people say things like "oh I wish I had back troubles, cuz I need a good diet!" rolleyes How stupid!) I just wish I could shield you from the thoughtless people and find a way to make you feel whole again. cry But, Gabby, please know that like PaLady said we ARE here for you always. Sending lots of love and prayers and hugs your way.

((((Gabby))))
Ry

Gabby123
Regular Member


Date Joined Jan 2007
Total Posts : 113
   Posted 8/17/2008 6:41 AM (GMT -7)   

Thank you so much Ry and PaLady and everyone else who replied to my post.  I really need the encouragement right now because I believe this week has truely been the worst week of my life.  My condition is getting worse and the pain is just unbearable.  I can't sleep at night, I have so much anxiety and depression.  My dad is in the hospital too which makes it worse.  I wish so bad I could just get my entire stomach taken out.   I can't even tell you how horrid this feels....for 5 years now I have had gastroparesis.   Ive even asked my doctors to give me a feeding tube and they tell me Im not thin enough and I dont need one.  I wish they could walk a day in my shoes and see how I feel.  I'm a strong believe in God but sometimes its hard to understand how someone could just suffer so much and not understand why or how I will ever get well.  Gastroparesis has no cure and the meds I take for it dont really help all that much but I take them anyways.  Im drinking only liquids now because my body cant even handle solid food anymore.  I tried to eat a hotdog and i about died and payed for it for 3 days after.  Ive never been married and have no husband just my mom and my dad but he is very sick as well, in hospital with diabetes, broken hip, heart problems, ect.  I had dreams of going back to school and becoming a nurse, getting married, everything, but those things I don't even think about anymore because the illness has taken them away from me.  This is so hard.  I tell people I have reflux disease and they tell me, "Oh, just take some Tums"  oh man do I hate that remark.  THey dont understand its not about taking tums, it really is a disease.  I drink water and I am burping up acid.  Thank you so much again for replying, I really appreciate you guys it helps so much to be able to come here and talk about this.  I have no one else to talk to that would understand.

-Gabbs


Love, 
Gabbs
 
 
DX: Gastroparesis, Bile and acid reflux, esophagitis, barrets esophagus, esophageal motility disorder, painful and difficulty swallowing, depression, anxiety, a piano player with carpral tunnel syndrome
 
                    ~ Miracle, Healing ~


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 8/17/2008 10:19 AM (GMT -7)   

Hey Gabbs,

I think I may know something that could really help you out.  I used to have really bad nausea/acid stomach problems both when I had a hiatal hernia and a bad gall bladder.  My hernia was fixed when I had my gastric bypass done, and I had my gall bladder taken out.  What I used before my problems were surgically corrected was Papaya extract(comes in tablet form).  It's all natural and really helps to mellow out the stomach discomfort.  It really helped me a lot and didn't interfere with any of my meds.  As I recall, it was pretty inexpensive and easy to find...I think you can even get it at Wal-mart.  It's definitely worth a try, and I'm so sorry I didn't think of it sooner.  I have residual memory problems after taking a toxic migraine preventative several years ago.

Hope this gives you some relief.  If you try it out, let us know how things turn out.

Leigh Ann smhair


Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ, stomach problems 
  • Divorced, 43, spawn-free 
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Impacted Kidney Stone Removed, Broken Ankle, Major Dental work(ten molars pulled, multiple cavities, root canals) 
  • Current Meds: Prozac, Klonopin, Atenelol, Stadol Nasal Spray, Lortab/Percocet, Trazadone, Buspar, Protonix, Tramadol, Visteryl, Carafate Suspension, Co-Q10, B2(Riboflavin), Remifemin(Black Cohosh)
  • PROHIBITED FROM ALL NSAIDS
  • Current Problem: Mysterious Internal GI Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/17/2008 11:34 AM (GMT -7)   
Oh, Gabby! It just doesn't make sense to me that your doc would say you aren't THIN enough for intervention. I wouldn't think thinness would have anything to do with it - how thin you are does not necessarily have a direct correlation to how many nutrients your body is taking in. If you are only taking in fluids right now, your body has got to be severely nutrient depleted. I would think they would want to fix that right away!

I wish I had some answers for you sweetie. I am so sorry to hear that your father is not doing well. How scary for you. Don't give up hope, dear. We are here for you whenever you need to talk.

idea Have your doctors considered allowing you to go on Fentanyl Patches or lollipops for pain control? I don't know if the lollipops would hurt for you, but the patches would deliver you some pain med through your skin so you wouldn't have to swallow a pill. Maybe that could give you a little relief without aggravating your stomach?

Ry

Post Edited (ryand) : 8/17/2008 12:37:35 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/17/2008 11:57 AM (GMT -7)   
(((((((GABBS)))))))))

PaLady

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/18/2008 5:37 PM (GMT -7)   
bump for Cloe
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