RUQ and Mid-Body Pain Discussion For All (Pre-Tx, During TX,

[DoubleDose]

I would like to use this thread to open up discussion regarding our members' experiences with Rib Pain, Right Upper Quadrant Pain, Abdominal Pain, and Shoulder Pain, either prior to, during or after tx.  

Any comments on changes in your mid-body pain issues either over time, or from going on therapy, or from gaining the SVR.  Better, worse, etc?

The location and quality of this type of pain is also relevant to the discussion.  As I have stated below, I finally realize that most of my RUQ pain from over the years, and now after tx is really related to the ribcage and connective tissue, and also seems to move into the spinal column during flare-ups.  Frequently the rib pains will become more general, and interfere with breathing on exertion, and make it difficult to sleep comfortably.  The pains also migrate to the shoulder, and to the hips and lower back.  When the rib pains are at their peak, I often feel a referred pain in my upper abdomen, but it corresponds to the level of mid-back/rib pain in every case.  If I press the ribs firmly, it often reproduces the pain.

Costochondritis and spinal problems seem to be very prevalent in the HCV and Tx communities.  It would be interesting to see how many of us have dealt with these problems in the past, and how they have resolved, changed, gotten worse....

Could  many 'RUQ/Liver Pains' that some experience really be joint, rib, and connective tissue generated, thus having no real involvement with the liver at all?

Feel free to post comments, observations, questions, etc. regarding these issues.

DoubleDose

[cuteus]

I think I am going to save this thread also for future reference.
beamer; my sis was screaming in pain when they gave her some form of electrical tx for her discs. she never went back. Maybe hers was not a miracle worker!

DD: I have wracked my brain trying to remember when symptoms and possible infection met and I come undecided. I always had a sort of fatigue, maybe related to slow metabolism, and I thought maybe I got infected with the mass vaccinations in elementary school, but I donated blood in the 70's so I am thinking something would have come up as non a non b?
Then, California in the 80's possible infection site due to experimentation, but I recall no aches or weird symptoms after that period ended. I started Jogging and got a swollen knee with no dx after fluid was removed. A couple of yrs later, the most severe sciatica was experienced. I had a bad fall months earlier, could be the reason.
Next, NY, 1989, labor and blood products, felt very sick after. RN and dr said it was probably the measles shot they gave me. During the pregnancy, the large joints began hurting, left hip, then right shoulder, rt hip, other shoulder, but that was it. I had a cough that would not go away in early pregnancy and I went for HIV testing. Negative. If I was already infected with HCV during the pregnancy, maybe the joints started getting affected from the stress of pregnancy? Carpal tunnel started around then also.
Comes postpartum, post blood product, feel very sick, a few months later I get a bad sciatica attack. Joints continue hurting, sedimentation rate tests and other autoimmune tests begin, carpal tunnel gets dx, no specific dx on the other pains, teeth deteriorate rapidly, sciatica, though milder, becomes chronic ache. This continues until 2003, when I get HCV dx. Tx comes and goes, and many of the aches remain. I would love to know the mechanics of a chronic infection in our body, and I would love to know when exactly infection occured. I am leaning towards the transfusion, due to the accelerated decline, or maybe a pregnancy at 36, accelerated the damage of an already infected system? I told a rheumatologist once that something was triggered in 1989, something systemic. He dismissed it. I never returned to him. What was triggered, the infection itself or my body's reaction to an existing infection?
The hospital is closed and I have no idea where the records went, so guesses is all I have.
Maybe other folks, who know exactly when they got infected can correlate some of their symptoms with that period of time. It seems most people do complain of aches and fatigue, and how old do we have to be for it to be normal? When mine started I was 36-37, I find that too young for it to be age related, but I have not researched the onset of arthritic conditions to confirm that one yet.
I will wait for the thread to be closed to save it. There is a lot of good speculation on the mechanics of immune response for both chronic infection and interferon.
thanks for your input.

[beamishboy]

just a thot-i am no way knowledgeable-but sometimes pain follows a path& gets accustomed to that route;a familiar path as it were...My sciatica pain was 'helped' by intervention of accupuncture procedure-my miracle worker used shock therapy & sent a current down thru the nerve path to disrupt 'things' Most incredible relief!!!...maybe,partially, pain,symptoms don't know enuff to stop sending signals?? GOODLUCK sending them packing...

[cuteus]

Cali, by all means, I don't think there is copywright infringement, I have copied the page to show my PCP the forum.
Maybe yours will come up with answers for you.
My internist is also an infectious disease specialist. He is on consult for HIV in the hospitals, maybe he has seen similar stuff in his AIDS patients.

DD; I have not seen a connection bt the joint aches and the rash. This is the first time in months that I noticed the rash and I have been having the joint aches, mostly lumbar, elbow and shoulder, that were present pre tx, without the rash. I really was hoping these things to improve post tx and with SVR, but they didn't. So, I am not sure what exactly happened. The fact that these joint pains(started with the large joints) began when I was pregnant and continued for a decade before tx, through tx and post tx, tells me that, in my case, something else, not the tx, is at work. Arthritis at 36 seemed a little too early.
The burning in the lungs have been present for decades, I think is bronchi related and possibly asthma. TG I did not develop anything while on tx.
Winter season is a bad time to assess joint aches, since the cold weather affects me also.  
If the rash reappears, in conjunction with other symptoms once the warm weather gets here, I will bring it up to the PCP next time I see him.
This time the malar rash did not seem to come at a time when things hurt more than usual. I am pretty much the same as pre tx, right now except that the fatigue is not as severe and the depression not as dark.
Your case does seem to follow a pattern that you can track, so it might be easier to compare notes.
Things that have not happened to me since ending tx and reaching SVR; calf cramps and severe intestinal cramps that were accompanied by vomiting, all present before tx.
Have you checked Lloyd wright's site? he has a lot of stories there about post tx conditions. I know he is not the best source but...
The lyme test was not only reactive in antibodies, which can be a false result, but on at least one band in the antigen test. The dog, who sleeps with me, had tested positive this Summer. I might have to pursue this one a tad further because the blood  test is not enough even when positive, for a dx.
There were a couple of crawlies on the bed and on me this Summer, and I do frequent infected areas.
I know the tx did not help whatever was causing my aches, but it did not seem to make it worse post tx, either. So, what did my body do right? WHy am I not suffering the same pains as others? I did not want to keep the ones I had going into tx, but it looks like I have no choice there.
I might try some of Susan's supplements and see if they help now that hcv is not part of the picture anymore.
Anyone remembers what she was taking for the aches?
I am sure we will keep each other informed of new developments.
Research seems non existent in this area.

[DoubleDose]

Can you pinpoint exactly when you were infected with HCV?  It might be interesting to look at physical and psychological symptoms that seemed to begin after your infection with HCV.  I think we often have symptoms from the HCV that later are further intensified by interferon.  Maybe both (HCV & Inf.) cause the 'autoimmune' reaction in our bodies.  I also had the burning lung phenomenon for years before tx, only it was much milder, and less frequent.  I had the joint and fatigue issues for years after initial infection as well, but much less bothersome than during tx, and now after tx.  All of it may be a product of the internal systemic reactions to both HCV AND interferon.  My post-tx symptoms seem to cover so many different areas and joints, and move around with varying intensity, that I have to believe that it is a system wide response to the prior stimuli (HCV & Inf.).

I also got rid of the gastric/intestinal /nausea issues after tx, and have many other positive changes and benefits as well.  It is not all negative news, BUT the post tx symptoms are still quite disturbing and also interfere with normal function and feeling.  I also think this stuff is all 'wrapped up' in the larger 'depression/ fibromyalgia/ body pain' syndrome that seems to come from hormonal imbalances.  Maybe HCV and Interferon have a longer term effect on our brain chemistries ( like Serotonin, and others) and cause a post-tx pattern that is characterized by forms of depression, anxiety, joint and body pains, etc.

It may also be the development of mild to moderate autoimmunity, which also may provoke depression, and widespread body and joint pain.

All that I want is a strategy to address the problems.  I have read that Cymbalta and other newer AD's are being used to combat these problems, but I have not seen any reliable, broad scale studies yet that would validate using these drugs.  I have also read anecdotal reports of rheumatologists using Rituximab to get rid of autoimmune after-effects from therapy, but no larger scale, scientific data to support its use.

Thanks for your detailed reply above.  I think we all benefit from this sort of in-depth information exchange.  Other members may see information that parallels their own experiences, and it may encourage them to enter into the dialogue.  The more input, the better!  Someday, all these issues will get sorted out (we hope), and we will be better equipped to tackle the fallout from our long term HCV infection history, and our (sometimes extensive) interferon use.

Good Luck to you.

DoubleDose

[honey11]

I have never experienced the liver pain that lots have.  I do have at times some mild lower back pain and thought maybe it was from lifting something too heavy during my tx.  I did develop a hernia during my tx and my husband also which I thought was very strange that both of us had.  Most of my mild but still legit complaints are the feet(arthritis) Is what the conclusion is becoming and the mouth sores.  I still even after a year of being off tx do have some fog or cloudy days with depression here and there.  I know this isn't helping your post DD but just thought I would throw my 2 cents in because you never know who will come into forum on a particular day and read this thread and maybe have same thing.  I hope that your problems lessen as times goes on or you get the answers you are seeking.  I know lots that read this and are going through the tx are thinking just be thankful that you finished as SVR and I am very thankful and would do the tx again.  However,,I don't think we should settle after its all said and done for anything but feeling as good as we can everyday.

[Dale_Ray]

For 10 years I have experienced a discomfort in my right upper side in the exact place the biopsy was taken. I've always felt like they hit a nerve and just left the burning feeling there. I seems to have deminished since starting treatment in November (odd) I do have periods of right shoulder pain the goes from my shoulder joint to the base of my neck. This came with the treatment I believe. Biggest pain issue for me is hip joints, knee joints and ankles and toes. That starts on Friday night (shot night) and continues through Sunday night and then lessens considerably. Overall I guess its not so bad. Dale

[cuteus]

I had one dx herniation in a lumbar disc prior to tx and one more diagnosed during tx. I decided to read on the subject and found out that it is made of 80% water. Even though I was on Pegasys, and it is not processed through the kidneys the way pegintron is, the meds probably still increase the need for H2O and maybe the tissue with the most need for water can suffer some defficiency that makes them weaker. It was one of the many theories I pondered upon. Of course, family hx of disc problems plus the huge fall in my 30's when learning to roller skate and gad knows what else, did not help either. I had that feet problem during tx, but it did not stay for good which is ok by me, since I got the disc to contend with.

All; a while back there was a discussion of the malar rash associated with other symptoms, either pre, during and after tx. Who has had the rash and was anything else associated with it? All I can find on the net is a connection to lupus, but it does seem to have other causes that are not pursued as much as the lupus connection, like lyme.
It was brought to my attention last wk that my face was 'flushed' and I had no other symptoms and did not even noticed the rash until it was mentioned to me.
http://www.myalgia.com/lupus.htm
In searching for more on info on the rash I came accross this site that I bookmarked because it is quite comprehensive in the description, diagnostic tests and possible causes for many of the complaints we are having. It is dated 2003, so it mentions hep b as possible cause for some symptoms, but I think it should be updated to also include hep c in their list. I guess we can safely assume that if hep b can do it, so can hep c.
read this site when you have time and see if anything rings a bell. Honey, it has mouth ulcers as a symptom of immune disorder, check it out:
http://www.aafp.org/afp/20030915/1151.html

[DoubleDose]

I frequently get the malar rash on my face, and it began during my first tx in 1999.  It comes and goes according to how badly I am feeling, and I do believe that in my case it is a 'sort of Lupus-like' manifestation.  The rash is not really like being flushed, or a reddening of the 'cheecks' for a short period of time, but is more across the cheekbones, and sometimes shows up across the bridge of the nose. My rash looks red and somewhat spotted, strawberry like, and feels a little warm or tingly when it is at its peak. It is not very prominent, but still is noticable if you look for it.  My rheumatologist has told me several times that a 'vague autoimmune disorder' that shares similarities with Lupus, is a common occurrence after interferon therapy, and that many patients coming to him have this syndrome.  He did not seem to feel that it was as much of a concern as full blown Lupus, or RA, and did all the blood tests on me to eliminate other issues (lyme, systemic diseases, etc.), and found all the 'mild to moderate' autoimmune abnormalities on my results that he sees on others who are post tx.  He offered no plan of treatment, or medication, and more or less implied to 'live with it' and see if it gradually fades away.  That was almost two years ago, well after I had finished tx....and today...my symptoms are the same.  They flare in cycles.

Bear in mind that autoimmune diseases, like Lupus, RA, Sjogren's, etc., often manifest in joint and connective tissue symptoms, fatigue, brain fog, and odd rashes, mouth sores, etc.  Abdominal discomfort, and lung problems are also a frequent part of the pattern.

So if you look at many who have pronounced post-tx problems, I think you will find combinations of the above symptoms to be the main issue...with or without the malar rash.

I believe that many of us have reacted to the lengthy interferon dosing by creating an ongoing state of 'autoimmunity' in our bodies.  Maybe this is only happening in some people, and in varying degrees, but it does seem to be a common pattern for many.  One research oriented department head that I spoke to at Johns Hopkins said that interferon causes changes in cellular behaviors that often get passed on to succeeding generations of new cells....his inference was that it might take a good many years to slowly unwind the influence of interferon on our systems.

DoubleDose

[cuteus]

Yes, I remember you had mentioned the rash and so did Scott. I was not sure if you were still experiencing it. I remember having it many yrs ago while living in Ohio and it made me think of a unconfirmed dx of lupus from a test done during my hospitalization for Dengue.  It looks as if traumatic illnesses can trigger autoimmune responses also, depending on how severe you experience them. I have no idea what test they performed since I never was able to get copies. Subsequent tests showed nothing definitive. I had the rash during tx, and for a short time after tx.
This is 14 months post and for the last few months I felt almost the same as pre tx in the aches and lassitude, and recently the rash(lasting two or three days). I can't make the tx connection, though, because  a recent lyme test shows some reactivity, but the one yrs ago was negative. Lyme is another very hard condition to dx.
So many factors can play a part in what we develope down the line. I can't honestly make any direct connection to the tx, in my case. I think finding out why some folks don't develop anything and determining why, can also help to discover what is at work in those that do develop something, much like the research done on spontaneous recovered hcv infected, compared to the med triggered svr and the still infected, ongoing at the Hepatitis Center in NYC.  BY checking the blood of each one and comparing the components, they can tell what might be at work.
Maybe at some point they will check the bloodwork of folks complaining of ongoing symptoms and compare it to those who don't seem to have any. As stated in the polyarticular joint aches article, there would have to be a very comprehensive evaluation that includes just about everything from familial hx to taxes paid.
HAve you contacted any researchers with your questions or with requests to study things further?

[NYgirl]

Just on a little note - on a soap opera last week the character who is in dire need of a liver transplant experienced really bad LUQ pain apparently as he actually went OH! started to fall over and grabbed at slightly over his left hip.

I wonder why nobody bothered to tell him where his liver is?

Just thought that might make us all feel better, you know, things could be worse we could be having LHQ pain (left hip quadrant) LOL

[Dale_Ray]

That would be the upper left qudrant of his A## I suppose. Doc keeps trying to show me where my liver is located on a wall chart in his office. I tell him I don't want to know because if I do and as big a hypocondriac (spelling - Tennessee native) as I have become I would swear I had a new ailment. Ignorance is bless and I am one happy fellow. Dale

[cuteus]

LOL! only in soaps!

[can-do-man]

I find this very interesting. From following your threads and the replies you receive it seems theres no certain Pre-tx sides for people. I'm a stage 4 and have been, besides the fatique (which is one thing most all seem to have) i had no other known symptom's, Always felt good, never was one to have the flu. Maybe a minor cold but wouldn't last long. Where others, my wife included would be dowm in bed maybe a week. So it seems my immune system was able to fight things off pretty good. Except for this HCV. Whats your thoughts on it?

[sunspot]

I had liver area pain for a few years. It was mostly mild until the last 6 months before tx when it hurt quite a bit. About 1 month after starting tx, the pain went away. 3 weeks after completing tx, the pain came back in the medium range. Now 2 months post tx, the pain is gone.
I hope this gives some members hope that the pain can go away.

Dana

[cuteus]

there might be a posibility that some of the diagnostic tools used in other post tx syndromes, might help some of those exhibiting what they feel is connected to tx. In this study
http://www.neurology.org/cgi/content/abstract/57/11/1980
some could have been dx as MS. It seems that the belief is that this syndrome is not related to the meds but to the disease itself. I wonder if spontaneously recovered hcv infected, have any symptoms post clearing.

[DoubleDose]

I am also curious as to the long term experiences of those who have spontaneously cleared HCV in the past.  Do they have ongoing problems that fit in any particular category?  Do they develop any 'autoimmune-like' problems.  Are they generally 'like' the rest of the non-HCV population as far as health AND 'perceived health'?.

The other major difference with this group (other than their not having experienced interferon tx) is that they have all experienced 'acute HCV' before clearing, rather than chronic, long term HCV as most of us.  My question is whether acute HCV really 'gets at' the same organs, and systems within those infected as those with chronic HCV.  We may have developed more nervous system responses, autoimmune patterns, remote organ and compartmentalized infection than those who only have a 'brief' acute HCV infection.  Their immune systems may clear the virus well before it can really entrench itself, and develop a pattern of damage throughout the body, as often is the case with chronic HCV patients.

Good questions.  Thanks for your replies.

DoubleDose

[cuteus]

that is exactly what I was wondering!
unfortunately, I see NOT a thing when a web search is initiated, and all the clinical trials of post tx conditions,  want you before you event start tx. I saw one that was studying people post tx for depression and other cognitive stuff, but you have to be pre tx to be included.
I don't see how any of us svrs could qualify for any study, since they can't assess pre tx conditions and factors themselves in order to compare a post tx state. Sigh!

[honey11]

Between you two scholars of research,,,,I was hoping when I checked back end of day,,,,I would have a solid answer lol
I guess its not going to be that easy.  I don't have the malar rash so that was an easy check off.  Mine is more joints in the feet and the dr that did my x-rays did say that I had the beginnings of arthritis in my feet so I'm trying to address that situation so it won't get worse.  But yes,,,canker sores I get all the time.  I know after stopping treatment and also 6 month  post,,,they did that test,,,,ANA and that came back negative!  I'm starting to agree that its just a touch of autoimmune but not enough to be full blown or show up on tests.

I was eating a sandwich this afternoon and one of my back teeth,,,partial tooth came out! Geeze!  So off to the dentist I'm going tomorrow.

[linthomas]

Hi everyone, just wanted to jump in here for a moment. Hope everybody's doing as well as possible. About the pain in right side I got one Friday that just would not go away, it hurt to breathe. I've had a lot of pain in rib area before but this was different. I don't have gallbladder so where this was was just liver and pancreas, (another Tennessean who can't spell) anyway stretched over bed on stomach, hurt like heck, 10 minutes later got up and it felt pretty much normal, sore for a couple of days. Any ideas this was one if it had stuck around longer who have had to call dr. And this was before I did shot on Friday, had did Procrit. Kinda on empty stomach, Any ideas would be greatly appreciated. Thanks Linda

[DoubleDose]

Often, IF it hurts to BREATHE when you are having mid-body pains,
the source of the pain may be in the ribs and spine.  Lying down on your stomach would put pressure on the ribcage, and IF there is any spinal problem, or costochondritis involved,it could also impinge on nerve roots in the spinal cord that attach to the ribs.  This can refer very sharp, and dramatic pain to the abdominal wall, and other internal organs, as well as causing severe pain upon breathing.  Movement of the ribs, or pressure on them will cause a triggering and/or intensification of the pain you are experiencing.  Another way to determine ribcage and spinal causes, or involvement, is to stand erect and twist the upper torso in different ways top see if that causes specific pains to be generated.  Pressing on the ribs, each individually, both in the front, and then in the back, near the spine, will also often turn up numerous problem areas that had been unnoticed previously.

It often feels like only liver pain, or upper abdominal pain, but my guess is that many cases , possibly even most cases, are triggered by this intercostal, costochondritis-like joint and connective tissue syndrome.

Try to ascertain whether you are having 'true' internal organ pain, without any involvement with the skeleton, or ribs.  
You may be surprised at the connection you discover, relating to the skeletal nerves, and tissues.

DoubleDose

[Califia]

Wonderful to eavesdrop on that conversation between you.  Thanks!   Yeah, it's annoying, if not worrisome,  that there is so little tracking of patients pre- post-tx, but I suppose the costs of thorough medical workups would be prohibitive.   Still,  medicine is so over-specialized that the master technicians of the various parts seem to rarely communicate over the high walls dividing their various turfs, much to the detriment of  their patients.   Btw, I'd like to forward copies of these posts to my internist, unless you'd prefer I didn't.

[linthomas]

Thanks for answering, I am now noticing being sore on other side but farther up, which could just be from the flu like aches we have, plus have terrible earache. Gonna call primary if it doesn't get better in a couple of days, But anyway had MRI done on my back back in summer and have mild scleosis, I usually have pain in my back especially when blood count starts dropping, when I get really tired, stand too long, sit too long, but I have never felt a pain like that, But it sounds like you know what you're talking about so it may very well be in my back. Makes me feel better than thinking it's my liver. Thanks again Linda

[Califia]

Shite!   That was supposed to read "Especially to DD and Cuteus."     Bad machine, bad.

[bwave2u]

just my experience w/ these aches and pains. i have degenerative
disc disorder/ibs/3 surgeries on neck & back, disc removal & fusion & they want to open me up for another one. with all this the conective tissue to the ribs is, i guess yould say lose and my ribs go out of place. making it very hard to breath deep. the only relief that has been true and doesnt involve cutting me open or giving me more pain meds, as i am on 180mgs of morphine a day as it is, has been going to,(and i know this is going to sound stupid but,) a chiropractor. I have been in chronic pain since age 22, i'm 40 now. after seeing a reputable chiro for awhile the ribs went back into place, discs were unpinched some what. my right leg turns way out and is atleast an inch shorter that the left causing sciatic pain & after being worked on for a bit my leg straightens out some what which relieves sciatic pain. it just seems to straighten me out and it gives me relief. i know that sounds just too simple but it doesn't hurt to give it a try. also if you do try a chiro and it helps you do crunches to keep your abs tight and that will hold the ribs where they should be:) as i said, just my opinion. The side pain may just be inflamation of your liver. i have that pain all the time to. sorry you're going through so much pain. i wish you the best.