The pain jus doesn't stop

[icekymmiii]

I have recently been diagnosed with hep B & C ,swollen lymnodes,swollen spleen,and swollen liver. In october I started experencing horrific pain on my left side. Swore it was a pulled muscle. No suck luck. I was hospitalized and had a biopsy done thru my back on the lympnodes. the results came back neg. I am still in horrific pain in same spot it originated in oct.  My Drs. have not put me on anything because they wanna do another biopsy thru my stomach so the are holding off meds pending chemo. I have been told its ghost pains,the liver doesn'y hurt, and i cant get anything until I see a pain management dr which isnt for weeks. Now does any of these things I have really cause pain?? Is there anyway of possibly lighting the pain?? I have no insurance am going thru a charity care and have a hard time getting straight answers. Id take any advice from anyone willling to share. ty

[ceanothus]

Casper's right, it really does sound like they are ignoring your pain because they think you are an addict. It scares me to think of how often doctors mistreat people because of that, ignoring severe pain and other real signs of illness rather than take the slightest risk that maybe they will be embarrassed to find out later that the person just wanted drugs. My sister-in-law died at age 38, leaving behind 3 young children, because the doctors didn't take her case seriously until she got advocates on her side, and then it was too late to help her. I can't think of anything else that will help you. You don't deserve to be treated so badly, but once they've labelled a person that way it takes a LOT to get any serious attention. You really need to focus as much attention as possible on finding someone to advocate for you.

[casper1442]

Get a reasonable advocate. Pain killers/heroin has made a major come back over past 5 years many doctors have began turning their heads to pain crys if any signs of possible addiction shows. Find advocates

[icekymmiii]

Had a horrible night last night. My right side from my groin area up to my rib cage was killing me. It hurt even to inhale. Im seriously about to have a nervous break down. I cried for hours. All I want is them to treat whatever the problem is. I can not tell you how mad i have gotten thinking about all the appts. I have had and to jus have my lungs get listened to and shuffled away has brought me to my breaking point last night. All I do is think and think and think  then that turns into crying . I have a appt this afternoon for a pain management dr. I'm greateful for the pain meds but to me thats jus putting a band aid on it. I get that another biopsy has to be done but can't get a answer to when. I have never missed a drs appt  had blood drawn cat scans done and then nothing comes from them. When i went to the er the other night my oncologist saw my cat scan and that nothing has changed since oct but he never even came down to see me. I was told by er dr that my ocncologist was mad I made a er visit. What??  was my reply. So as bad as I wanted to go to the er last night  I wouldnt go so I wasnt embarresed by bring called a er jumper or told one of my drs. who i met for a mere 3 mins was mad at me.  Sorry if I jump around about different things your jus the only one that has honestly listened and HEARD what I had to say. I have zero family support. I am going thru this alone and if i bring it up to people I get a look like not again. No one wants to hear about my medical condition or they make it out to be like a have a hang nail. I am completly ignorant when it comes to med terms drs throw at me or my condition. I look up things on the net and it seems to look like I have EVERY single thing that a person with lymphnoma has. I dont want to self diagnose but i constantly do being i get no answers from my drs. Then the panic really sets in. What if I do have lymphnoma and they havent treated me for anything yet. My mind goes everywhere then I basically  shut down.& I wanna always sleep. Gosh let me stop here  I could go on forever about the drs  my depression and lack of eating and sleeping. Thanks again so much for answering my post and giving me advice. (( hugs))

[ceanothus]

First, a small point: you will probably get more people trying to help if you avoid using all caps in your posts. Many people see caps as the internet equivalent of shouting and will turn away from such posts.

I repeat that I'm not a doctor and am just making guesses on this, but once again I am thinking your symptoms sound quite reminiscent of my own obstruction event, and the behavior of the doctors in your case is reminiscent of how my sister-in-law was treated about 15 years ago. She also had severe abdominal pain and was unable to keep down any kind of food at all. Hers got bad enough that she couldn't even drink ensures without throwing up, and for nearly a year she existed solely on nutrition via a pic line and had frequent crises that required fentanyl patches. Her doctors treated her as if she was one of those "hysteria" cases from the 1800's, when they weren't treating her as a drug addict looking for a fix. She was neither, and was desperately trying to raise three young children on her own while being horribly sick. After my husband and I spent a week with her, advocating for her in conferences with her medical providers, they finally took a really serious look at her and discovered she 'd had an intestinal blockage for a whole year while they were treating her like a loony case. Sadly, by that time it required removing almost all of her intestines and she died of a related problem before ever getting out of the hospital. Medical people can and do make very serious mistakes sometimes, including mistakes of omission, and this is why I keep going on about finding someone to advocate for you. It's valuable for all of us. I take my husband with me to all important appointments to help me remember both my questions and details of what the doctor tells me, but having someone along is even more important if they are treating you as if its all in your head or a drug problem. A family member or a good friend are the best but if those aren't possibilities then maybe you can get someone from church (if you are a member of one) or from social services. Most large medical centers have social service workers and/or pastoral services, and other options would be city or county social services. You might have to call a few places and ask them to direct you to an appropriate office, but this could be very much worth that effort. Please do it!

[icekymmiii]

WELL 2 DAYS AGO I SPENT QUITE A FEW HRS IN THE ER. WOKE UP TO START DRY HEAVING AND THE PAIN GOT WORSE THAN EVER. AND YES IT DOES SEEM LIKE THE DRS ARE SHUFFLING  ME AROUND FOR SURE. I AM ALWAYS BEING TOLD BY THE DRS THAT I SHOULDNT BE IN PAIN. IT KINDA MAKES ME FEEL LIKE THEY THINK IM THERE TO GET A FIX. SO I SIT AND SAY NOTHING. I HAVE BEEN ON FETENYOL PATCHES AND DILAUDA'S (SRRY NOT SURE ABOUT THE SPELLING) . I AM NOW OFF THE PATCH BECAUSE I CANT AFFORD THEM BUT STILL ON THE DILAUDA'S. ITS LIKE EVERYTIME I SEE A DIFFERENT DR THEY TELL ME OPPOSITE THINGS. AND ABOUT THE "PENDING CHEMO" I GOT ACCEPTED TO BE ON A FREE MED PROGRAM FOR BARACLUDE ENTECAVIR. WHEN I TOOK IT TO MY DR SHE SAID THAT I COULD NOT BE ON THEM AND GET CHEMO. I HAD A BIOPSY DONEON MY LYMPHNODES THRRU MY BACK WHICH CAME UP NEGATIVE. THANKED GOD AND WENT ON MY BUSINESS. THEN I GO TO GIVE THE ENTECAVIR STUFF I RECIEVED TO GET IT FREE SHE THEN TOLD ME ABOUT THE PENDING CHEMO. EVERYTHING FROM THAT POINT ON WENT SILENT. I SWORE THAT WAS OVER WITH  WITH THE NEGITIVE FINDINGS. NO SUCH LUCK. THEY NOW WANNA DO ANOTHER BIOPSY THRU MY STOMACH. WHILE IN THE ER THE OTHER NIGHT I GOT A CAT SCAN DONE. THE ER DR GOT IN TOUCH WITH MY ONCOLOGIST NOTHING HAS CHANGED SINCE MY OTHER CAT SCANS BY THE ER DR DDNT LIKE WHAT HE SAW ON MY LYMPHNODES. HE WOULDNT GO ANY FURTHER INTO DETAILS. HE SAID MY ONCOLOGIST WOULD BE IN TOUCH AND WAS MAD AT ME FOR GOING TO THE ER. CAN YOU IMAGINE!! NEEDLESS TO SAY I CAN NOT WAIT TO SEE THIS MAN. SO EMBARRASSED. AGAIN IT GOES BACK TO ME GETTING PAIN MEDS. WAS ASKED IF I WAS A ER JUMPER. I WANTED TO BECOME PART OF THE CHAIR I WAS SITTING ON. ER JUMPER I FOUND OUT WAS A PERSON WHO GOES FROM ONE ER TO ANOTHER TO GET PAIN PILLS. AGAIN I WAS MORTIFIED THEY EVEN THOUGHT OF ME THAT WAY. I JUS HAVE A FEELING I DO HAVE LYMPHNOMA. WHICH SCARES THE BAJESUS OUT OF ME. MY DAD JUS PASSED AWAY ALMOST A YR AGO FROM CANCER. I LITERAALY WATCHED HIM IN THE HOSPITAL SLOWLY GO FOR A MONTH. DONT WANT MY KIDS EVER TO GO THRU WHAT I DID WITH MY FATHER.  I WANNA THANK YOU FOR ANSWERING MY POST. YOU HAVE DEF GIVIN ME HOPE. AND TO SAY I HAVE YOU WORRIED BRINGS ME TO TEARS. I CAN NOT THANK YOU ENOUGH!!

[ceanothus]

It's hard to suggest the best diet for you, in part because its kind of hard to figure out what is going on there - what is causing your pain and what is causing you to throw up when you eat. In most cases of hepatitis C there aren't any dietary restrictions other than zero alcohol intake. If it progresses to serious liver injury patients are advised to follow a low sodium diet and to be cautious about excess protein, especially to avoid red meat. Your situation sounds much more complicated though. I'm not a doctor and can't diagnose, but I can say that one condition that can be both painful and cause an inability to eat without throwing up is just about any kind of blockage in the GI tract – but I would think they would have looked for that already. I've been through that experience and felt much like you describe, but I was diagnosed to a reasonable degree of certainty after about 24 hours in the ER and then they operated to confirm the diagnosis and fix the blockage.

If you can drink Ensures they will at least keep you going if you drink enough. Drink as much water as you can. Have you thought of anyone who can be an advocate for you? I really think that is extremely important at this point. If you are really sick and in a lot of pain, you aren't going to be able to advocate well for yourself, and it sounds like your doctors are shuffling you around without a clear plan - or at least not one they've clearly discussed with you. Your life and health are too important to just hope things get taken care of eventually! You need help in getting all the care you need. Please ask someone to help you, especially to go with you to appointments. I'm worried about you!

[icekymmiii]

ALSO WOULD ANYONE KNOW OF WHAT FOODS ARE GOOD TO EAT WITH THIS. I AM LIVING ON ENSURES. I HAVE LOST A TON OF WEIGHT BUT I CANT EAT. I EITHER IMMEDIATLEY AFTER EATING THROW UP OR I DRY HEAVE FOREVERRR. THIS IS ALL SO NEW AND SCARY. IM SCRED TO LOOK INFO UP BECAUSE IM AFRAID OF WHAT IT MIGHT SAY, BUT ON THE OTHER HAND I NEED TO EDUCATE MYSELF. IM LIKE A DEER IN HEADLIGHTS.

[icekymmiii]

WHAT I MEAN BY HOLDING BACK IS THEY ARE NOT GIVING ME ANY HEP B OR C MEDICINCE.  I WAS TOLD THAT I CAN NOT BE ON IT AND GET CHEMO AT THE SAME TIME. NOW MIND YOU WHEN THE BIOPSY CAME BACK NEG. I THOUGHT I WAS OUT OF THE WOODS WITH IT. I GO TO GET THE SCRIPT FOR BARCULUDE SHE TELLS ME NOT YET YOU MIGHT BE NEEDING CHEMO. NEEDLESS TO SAY MY WORLD STOPPED. MY PAIN IT ON MY LEFT SIDE GROIN AREA. SWORE I PULLED A MUSCLE TWISTING TO HARD PLAYING WITH MY DOG. NOT THAT LUCKY.  THEY ARE CHECKING FOR LYMPHNOMA. I AM NOW WAITING ON ANOTHER BIOPSY WHERE THEY ARE GOING THRU MY STOMACH. LIVER CANCER WAS ALSO BROUGHT TO MY ATTENTION. I AM COMPLETLEY OVERWHELMED. LIKE I SAID SWORE I PULLED A MUSCLE. I JUST WENT TO ER AT 130 AM DUE TO PAIN. GOT A  C AT SCAN DOC  GOT IN TOUCH WITH MY ONCOLOGIST  WHICH IN TURN HE SAID NOTHING HAS CHANGED SINCE MY LAST ONE IN LATE OCT. ALL I AM BEING GIVEN IS OAIN  MEDS. NOTHING ELSE. WHICH SCARE THE BEJESUS OUT OF ME ESP NOW KNOWING ITS THE SAME AS OCT. THANK YOU SO MUCH FOR ANSWERING MY POST!!

[Idyllic]

Wow I am really sorry all this is happening.  This post is really to encourage you to start asking questions and for support on how all your conditions come together. It is really important to understand what is happening with your body. I know things must be incredibly overwhelming right now.  

I encourage you to see if the hospital or doctor you are seeing has any kind of support services or outreach. The facility itself may not offer it but they may have contact information for places that do. Sometimes it is as easy as seeing it on a bulletin or brochures. Learning how to advocate for yourself is not easy but asking questions or for help in finding someone who will might be a place to start in garnering the support you need right now.

Pain on the left pretty much rules out the liver since the liver is on the right.

http://www.medhelp.org/user_photos/show/304154?personal_page_id=414409
(Courtesy of one of Hector's old posts)

[ActingBrandNew]

"I have recently been diagnosed with hep B & C ,swollen lymnodes,swollen spleen,and swollen liver. In october I started experencing horrific pain on my left side...... Now does any of these things I have really cause pain??"

Short answer, yes.

Enlarged Spleen:
"Feeling discomfort, fullness, or pain on the upper left side of the abdomen; this pain may spread to your left shoulder."

http://www.webmd.com/digestive-disorders/enlarged-spleen-causes-symptoms-and-treatments

Im not going to speak on the lymph nodes but I will say that Hep C can cause abdominal pain....even on your left side. I had "horrific pain" as you  describe it on my left side of abdomen. Ran all the tests in the book. My doctor finally said "Hep C can cause non-specific abdominal pain" I thought it was a cop out to "I give up". Well, 19 weeks  into treatment...the pain is gone now. I had this pain for about 20 months on the left side of my abdomen. Debilitating...had to quit my job pain....its gone. It dissipated slowly as treatment moved along...Hep C? Gotta think so.

Just my 2 cents

[Diana66]

I am really sorry you are going through all this. It must be a lot to deal with.

You are mentioning that the doctors are witholding chemo until another biopsy is made.

Enlarged lymph nodes are not a nnormal feature of hep c. However enlarged lymph nodes and spleen can be a sign of lymphoma (which can be caused by hep c) and also enlarged lymph nodes can accompany other cancers

Ceanotus had a very good advice: find an advocate to provide support

Pain in left side? Where? Up, down, front, back? That pain can be caused by many reasons. Even swollen lymph nodes can press on some nervs resulting in extreme pain. A kidney infection can result in horrible pain as well (and enlarged lymph nodes).

[ceanothus]

Wow, I'm so sorry you are in such pain. It is not at all common to have abdominal pain with Hepatitis C, and I don't know for sure but I doubt if its common with Hepatitis B either. In any case, left-sided pain sounds like it would more likely be something else.  I have not heard of swollen lymph nodes accompanying Hepatitis C either. I'm sorry I can't help more with information, but I do want to encourage you to speak up strongly about the pain. Perhaps you need to find an advocate, a friend or relative to accompany you to doctor appointments to provide you with support and help you demand more care. I don't think that being a charity case should require you to be docile about your care or to suffer unnecessary pain. Pain medications shouldn't interfere with any biopsies. What do you mean by "pending chemo"? Do you have a cancer diagnosis as well as hep B & C? I hope not. Please give more details and also include where you live, as it might allow someone to recommend a better care option.