Hello to everyone, hoping for some feed back please. Was in ER tonight, the last four days I have had major pain without seizing in the lower right rib, gallbladder area. They did CT scans and found nothing and said to follow up with specialists as it could be something related to the complexity of the disease. Wondering if any of you have dealt with this type of pain. My skin is tender also almost a slight burning sensation. The pain is constant, sharp and in an isolated area. I am wondering now if the muscles and nervous system are being attacked considering the organs are good yet the pain is still not leaving? They thought at first I had gallstones or something related to liver, but that test was clear. Quite baffled with the pain. Feeling a bit fatigued from the lack of understanding laced with the levels of pain. Also what are the exact tests that I should give to my doctor related to the thyroid? I know admin, Mary has given the recipe for the correct blood tests needed in order to diagnose properly the thyroid related to APLS. I am scheduled to go to back to the specialists and will be asking for new blood draws. Thanks again to all the supporters on this forum, it has been life changing with the first hand knowledge here.
Sharp constant pain lower right rib a... - Hughes Syndrome A...
Sharp constant pain lower right rib area
I’ve had this and it was awful.
Mine occurred when my inr dropped to a sub-therapeutic level in October. It was like a sudden onset pain in my right upper quadrant area.
My acute pain died down and I was left with a throbbing agony for about 6-8 weeks.
My Drs did a lung scan at first which confuses the situation as it wasn’t my lungs that were hurting!
I then had liver function tests and they had gone haywire! An ultrasound didn’t show a clot but showed a fatty liver.
I never got an answer directly although its been suggested it was a micro clot - which is what I believe.
I hope you’re feeling better soon. I was utterly miserable when it happened to me x
Thank you for the support, I understand. The pain has not left, still striving
Hi, I really hope you have some detailed help to get to the bottom of it, sometimes that sort of pain, including underneath the ribs can be this: nhs.uk/conditions/costochon... However of course gallbladder problems are prevalent with an untreated thyroid. Also presumably they will look carefully at your liver, as things can crop up with that such as this condition, here, not saying you have this but best your doctor at least rules it out: ncbi.nlm.nih.gov/pmc/articl... MaryF
Hello Mary, wonderful to hear your reply. I am not sure where to turn, they did all the tests they say they know to do and offered me pain meds and said to come back if it worsens and that it is the "complexity of the disease". So I am home battling the pain and striving to for "normalcy " unfortunately my go too is humor and not feeling very funny about the high levels of pain. But all in all I'm pushing forth, staying on my routine w/hydration, clean food, gluten free, remaining active, killing the tummy bacteria daily. Hoping soon the pain will leave. Not sure where to turn at this point... i had a clot in my liver before years and years back, it almost feels close to that kind of pain but they said there are a few tiny spots on my liver but that is normal for eating red meat, which I and my husband laughed at due to me being a vegetarian now for years. Big sigh...no answers as of yet, due back at OHSU hospital next week, they will do more thorough testing I pray.
Thanks again for your support, Mary.
Becca
Many years ago now I had similuar pain, each attack of severe pain was followed by weeks of what I can only describe as contant bruising pain.
After going through intensive tests, of which most came back ok, they blamed my APS, for these attacks. My gall bladder was not normal shape, medical term, Phrygian cap, in normal people this would not cause any problems, for me, they presumed, this along with my APS, was causing bile and blood to be sluggish.
Like Yllek I was also diagnosed with fatty liver and blood tests were high.
As you mentioned, its really worth checking everything out, especially your thyroid.
I hope you feel better soon x
Thank you kindly, Holly
Hi. I have just got out of hospital having spent a week (2 weeks a go) in with exactly the same symptoms. Lots of negative scans and no real answer. A minor issue with Liver bloods but they said this is common in APS patients on Clexane.
Only suggestion that they seem to have gone with is that it could be a micro clot on my liver which can’t be seen by a scan. Am on morphine for the pain and they said if it was this, eventually the part of the liver where the clot is would die and the pain would go. Apparently, Liver can rejuvenate itself so is the best organ to have a clot in if you are going to get one! They said that it may take a while though ( not sure how long a while is). There’s a possibility that once the tissue actually dies you will see it on a scan. They are talking about possibly rescanning me next wk.
Hope you feel better soon. I found morphine patches (Butec) really help as they slowly release medication and better control the pain. It feels more like a severe bruise now rather than stabbing which is a bit easier to live with.
Interesting Clairey25, do you have any idea as to how the radiologist describedor would describe “the dead clot area” or what it would look like on a scan. Thank you.
No sorry. Might find out next week though. They did say it is quite tricky as the timing of the scan has to be right as once Liver has repaired itself it won’t be able to be seen as well.
Thank you kindly
Becca, sorry you’re having extensive pain like this. When I was working I carried a heavy case load and the majority of my work was sitting and writing massive reports, hours upon hours. Even though I would frequently stand up and move around a minute or two, I would continue to get this incredible pain in my right rib. It actually felt like it was on the backside of the rib. It would get so bad I would fly out of my chair like missle being launched, kid you not. We purchased an infrared pad (about $600.00) and I would turn it up to 145 degrees and wrap it around my back and ribs and then sit down in the chair using a bungee chord to help keep it in place. It was the only thing/way that allowed me to keep working. No pain pill would cover the pain.
So for me, sitting caused/made the rib pain unbearable. Can you think of anything you’re doing that might make it worse. Best wishes to you.
I might add that at the time I was not dx with Hughes nor was I on blood thinning agents. So it’s an interesting point that Yllek brings up about low inr; she may be spot on.
Thank you for your kindness, pain is still there, nothing has changed in that department but I am resting a little bit more yet remaining active regardless. Nothing seems to help the pain but all in all life moves on 
Note to the blood thinners/INR-my blood did take a short drop down into the low 2.4 range which is not at ALL where my blood should be, I have found that I have far less issues if I remain at a 3.5 to a 4.0 range. I have a sinus infection right now and my blood went way low I believe from that as when I am sick I battle my INR levels. But I am back up to proper blood level INR stable and the pain has not seized at all.
Such is life....what else can we do?
Blessings. Becca
Did you ever have a trial on Fragmin? I wonder if there would be a difference in quality of life.
Sis: I've been having a very similar pain for weeks. Your descriptions defines my pain too. It came on rather suddenly over about 6 weeks. Lower right side and the pain wraps around to my lower back or "flank" as one ER doc called it. It is excruciating when I sneeze, inhale sharply, get out of bed or chair, or move just so. My primary Doc, whom I've met but once in three years now, only uses Physicians assistants for his work. These junior Doctors have had some imaginative diagnosis after X-rays, CT Scans and other MRI's:
They gave me heavy duty pain pills but they only helped when I was high.
They gave me a drug for enlarged prostate, of which I no long have. (It was removed by a urologist last year when he found cancer in it. They ignored my comments on that event.)
These Junior Doctors also prescribed muscle relaxers which gave me no help.
They also gave me medicine to help pass kidney stones which gave me no help.
The pain is getting worse and I am now unable to sleep long and am loosing my ability to walk. (It is currently 3 AM in the Great State of Idaho. Pain and I are sitting her writing you in the hopes of being some comfort.)
I've tried herbal sprays with moderate but , again, temporary relief.
I'm feeling hopeless as the pain now defines my days. I am going to pursue an exam by a chiropractor next week, I'll be watching this string of comments for other ideas. I'm praying for you, Becca.
My heart sank when I read your reply, I am so tremendously sorry for the pain you are in as I understand the depth of it as I am in this flow of no sleep with no relief also. Your reply did give some comfort to my heart as I hope mine does also. Big sigh. Well we are only one state away from each other as you know I am in Oregon. I truly wish there could be some medical professional that was close and more aware of our medical reality. Therefore will be praying for you too, DannyBoy.
I continue to eat gluten free and hydrate, hydrate, hydrate and eat clean foods not processed. All of my life I have been petite and the weight after the hysterectomy and last PE w/the length of time down, the fifty extra pounds has made it very difficult to get off. Never have I been in a physical health state like this. I wear my fitbit almost daily and keep active but this pain and joint stiffness is taking a tole. However, we must not allow it to take over and consume our mind to a point of depression, we must strive forward and keep moving even in little steps. So I hope my reply to yours helps you keep fighting the good fight, Danny Boy
The doctors are always shoving pain meds on me, I do not take them. With my caseload w/social service work/non profit work I see literally daily one life after another hooked on pain meds. I would rather take medicinal cannabis CBD oil if need be, yet I am not doing even that at this time. I am using heat then ice, I rest and use compression as must as I am able. It's a pacing myself kind of day due to the pain levels. Hoping it leaves soon.
I have learned that four important simple yet effective things help my day along and when I teeter from them even a little my body responds badly...therefore I stay regimented in daily killing the bacteria in my stomach w/home remedy of strong/straight ginger, lemon, cayenne pepper that I make into a shot glass full and down it every day to kill the bacteria which is a trigger for some of our symptomatic pieces and helps keep the viruses away, I also hydrate around the clock literally keeping an eye on my hour timer and making sure I drink pure water, pure teas and constantly hydrate, also I eat clean pure foods w/gluten free everything last but not least I remain active, movement is key even on the worst days I keep moving as much as I can.
I hope everyone on this forum that reads this finds support as I know it has helped my mind be put to ease that I am not alone.
Dannyboy...you know I'm praying for you and hoping for a better day for you today. It's wonderful to hear from you even if the pain brought you to say hello, thanks for the show of support, you have mine also.
Blessings,
Becca
Sorry if this is redundant I haven’t read all the posts, but just wanted to make sure I ask if you have had an actual HIDA scan for your gallbladder? I was having horrible pain and other scans were coming back clear so my doctor ordered the scan. My gallbladder had almost completely quit working, which can’t be seen in any other scan or test. (Biliary hypokenesia )
Thank you for the reply. I had an ultra sound and CT scan on my gallbladder and liver. Liver had spots on it but they said that was normal for people that eat red meat and not to worry about it. I am a vegetarian. Didn’t seem to phase them. The pain is still here and has not let up.
Becca, the HIDA scan of the liver is a completely different scan from what they gave you. I think they use dye that is detectable on a certain form of scan that shows how well bile is going through your gallbladder and pancreas. Don't quote me on that. Some people without gallstones can still have sludge building up in their liver and pancreas from a dysfunctional gallbladder. I have huge gallstones in mine which is why I have problems so they didn't do a HIDA scan on me. Here is what a HIDA scan is. mayoclinic.org/tests-proced...
I did not have gall stones- but the hidascan showed my gall bladder “ejection fraction” extremely low. I was put in urgent surgery. I was 30 years and 2 weeks old.
Good thinking, blizzard.
Becca... if/you see your doctor mention that it might be “floating rib pain”. I have had this problem for years on both sides it can occur. My heamathologist nor my rheumatologist knew what it was. It was my GP who came up with the name after he saw me in pain whilst attending to my husband at home! Yes it is painful and nothing can be done about it. Sudden movements can make the pain worse. However knowing it’s cause it somehow makes it less worrying! Hope you’ll feel better soon..
Hi Becca,
So sorry to read about your pain and that you try not to take any paindrugs for it either!
I read what APsnotFab answered you and you know me now, after so many years, that I always talk about the importance to have the right anticoagulation and thin our blood.
Can you selftest perhaps and follow your INR as I think you are on Warfarin. What INR is your therapeutic range put at? How many dogs do you have today?
Give my greetings to your Norwegian Prince! Norway has been fantastic in skeeing this year.
Love from Kerstin
Yes Norway took the gold so wonderful 😃. I do self test and I’m watching it closely. I have to keep my INR between 3.5 to a 4.0 in order to function well. My INr has been low lately I am thinking due to the sinus infection that I am fighting. Trying to work my blood back up. Eating salmon and sweet potato to balance out.
Wonderful to hear from you my friend. Blessings to you. I will keep you posted.
And yes all my doggies are curled up around me and my heating pad 😃
Becca
Thank you so so much for this information. I’m on it! I’m printing this info and bringing in hand to docs. Thanks again thank you so much. I am still in massive pain and huddling around my heat pad. Thank you
I also have fatty liver with high liver enzyme levels, way higher than normal bilirubin levels, and multiple gallstones in my gallbladder. I also have a swollen liver. Mild Hepatomegaly they have labeled it from a Doppler ultrasound I had last year. Perhaps you just have a swollen liver and that is causing you some pains. Who knows. It is so hard to sort all of these issues out when one issue overlaps with another and so on. Sometimes in my case they are so focused on blood clots because I had massive saddle PE in the past that they tend to focus too much on the clotting and they miss the smaller issues. Please let us know how you get on. You've gotten some good advice from the other members on here.
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