Need advice on what might be causing this - CLL Support

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Need advice on what might be causing this

cjc1 profile image
cjc1
10 Replies

I am currently ill with a low grade fever, very tender stomach and aching as if I have flu.From last Oct. to this past Jan. I had periodic episodes of bad pains throughout my chest that I put down to gas but they got so bad in Jan. I went to the ER thinking it might be a heart attack. It wasn't. Most likely trapped gas.

This past Sunday, after stupidly having seconds for dinner, I felt that familiar pain beginning. This was the worst episode of all and I actually threw up. Since then I have been able to feel my spleen which ached a lot but has now died down somewhat and I feel like I have flu, a tender upper stomach and my fever has come and gone. I tested for COVID and was negative.

Could this be my CLL or was it a bad case of trapped gas that unleashed an illness I might have been developing anyway? Before Sunday night I felt fine. Any insight would be appreciated. I have been on W&W since 2016.

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cjc1 profile image
cjc1
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10 Replies
albie58 profile image
albie58

Hi cjc1!

Have you had your gallbladder checked? When it's diseased it can cause all those symptoms and if it's diseased an infection could start that may cause a fever. Before I had mine out I would double over in pain and I could feel it in my shoulder blades and back. High fat foods were the worst and I ended up eating a low fat bland diet until I had it removed. Since then I've had no issues.

I'd have your doctor check it out. A simple ultrasound will give an idea if the gallbladder is the problem.

Good luck!

cjc1 profile image
cjc1 in reply to albie58

Thank you so much. I will have that checked. This is a very different development for me as I never experienced stomach/gas/acid reflux issues before and was wondering if it was a symptom of advancing CLL and spleen issues. Appreciate the response.

albie58 profile image
albie58 in reply to cjc1

Here's a link so you can read more about it. hopkinsmedicine.org/health/...

Big_Dee profile image
Big_Dee in reply to cjc1

Hello cjc1

Could be CLL. I only have acid reflux when CLL treatment is relapsing. When in remission, acid reflux goes away. Acid reflux in my case may be due to massive abdominal lymph nodes. Blessings.

sdowney8600 profile image
sdowney8600

I agree it could be your gallbladder, but it could also be so many other things. I had my appendix rupture after I had three separate appendicitis attacks that I did not identify as my appendix. They were each nine months apart. I was unaware that that could happen. I had even gone to my G.I. doc and explained that I was having these attacks of pain in the upper part of my stomach near my spleen. It would pass after several hours and I would rebound until it happened again. He completely ignored me and didn’t even do a physical exam. (He’s no longer my GI doc!).

On the third attack, my appendix ruptured and I went around for four days with a fever and pain in my abdomen that would come & go, and just generally feeling like I had the flu. I finally went to the ER on Day 4 because someone mentioned to me it could be my appendix. It never occurred to me!! My pain was up in my upper belly by my pancreas and spleen, not down in my right lower quadrant as most people expect. Sometimes your appendix can send referred pain to weird places in your body. My surgeon told me he had a patient who had pain only in his shoulder!

So please please please get to your doctor or go back to the ER and insist on an CT scan with contrast for your abdominal area at the very least. And if it’s not your appendix or gallbladder, I would urge you to have your doc do a full work-up—blood work, scans, and a physical exam.

I have so many GI issues —gastroparesis, chronic nausea & vomiting, chronic constipation, and also had my gallbladder removed 4 years after my appendix. And on top of all of that, I was in the ER at the end of July with horrible pain in my lower abdomen and having constant bowel movements which was causing urinary retention, and it turned out that I had a weird form of colitis. They didn’t know if it was inflammatory or infectious. It did not meet the pattern of normal colitis, but for whatever reason that’s what I had. I was in the hospital for a couple days and it resolved and now I’m fine. So it could be something like that too. Whatever it is, the fever, the pain, the not feeling well is your body‘s way of saying something is wrong. So please listen to your body and make sure your doctors listen to you!! Best of luck to you and I hope you’re feeling much better soon.

cjc1 profile image
cjc1 in reply to sdowney8600

Thank you so much and you are absolutely right. While I feel much better now I am dreading the next episode because each one has been worse than the previous one. 10 mins last October, worse in November and then Dec too. Jan went to ER but they only did a work up for heart attack. Then I was clear until now but what happened on Sunday night was the worst of them all. I will make an appointment with my GP and ask for a CT scan. I will also let my CLL specialist know. Thanks for your good wishes and all the best to you too in this health journey. Why can't we all be healthy and die peacefully in our sleep at a very ripe old age?

sdowney8600 profile image
sdowney8600 in reply to cjc1

I know, right?! Please let us know, if you can, when you’ve got this figured out and are feeling better. Sending healing prayers and wishes for a quick diagnosis your way! You deserve to feel better so get those doctors on it ASAP! 💜

Pearlpink profile image
Pearlpink

I agree with everyone else. If you are getting these symptoms they need to be investigated while you feel well.

We tend to develop a lot of tolerance while we have cll.

Just a few ideas. I agree that sounds very like gallbladder. I had mine out about 8 years ago, after it caused pancreatitis so it’s worth getting it checked. If the pain is worse after fatty sugary food then gallbladder ifs very likely.

However I also got similar pains from my spleen many years later as it had enlarged and nobody noticed, so a scan is very important to check that! If you can feel it then it’s probably a bit enlarged. If you are overfull it can feel incredibly uncomfortable so, I had lots of odd symptoms without realising!

Thirdly - I actually had coeliac disease, which is very common in my family. Mine didn’t show up on normal blood tests because IgA is often not very normal in cll. I realised straight after my cll diagnosis because I suddenly twigged that I quite occasionally went out for a meal with friends and then vomited shortly after! It was so weird! I was trying to lose weight at the time so didn’t eat much bread etc. and so when I went out and had a glutenny pudding it made me ill. Remember, if you have tests for coeliac you have to be eating gluten at the time!

Anyway. Sounds like there’s a consensus lol! Get a scan while you are well. I had a gamut of things but it’s more likely it’s to do with your cll.

I felt so amazing when treatment started and my spleen started to melt within weeks! Gallbladder coming out is very straight forward, but don’t leave it like I did! Don’t be frightened by any of it - just get them to find what’s causing it xxx good luck!

Soundsinamotion profile image
Soundsinamotion

it’s hard to diagnose as it sounds like GI problems, I would go see a GI doctor. Also try changing your diet to simpler less heavy foods, less sugar, less carbs. Might help.

CycleWonder profile image
CycleWonder

I have all three causes of abdominal pain - appendicitis, gall bladder and heart burn brought on by enlarged spleen and lymph nodes.

From your description, it could be any of these three. Appendicitis can start out as mild but develop into a pain that grabs you. It can also be sharp and a fever would possibly indicate an infection.

I never had a fever with heartburn so I would discount this as a possible cause.

A gallbladder attack can happen after eating too much particularly if it was a fattier meal than usual. I felt like I had the flu and could not sit still.

I would go see another doctor today or go to the ER. ERs are usually good at diagnosing what other doctors miss. I would not wait as appendicitis can get worse quickly.

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