Emerald

Emerald

Despairing
Sep 16, 2019
74
Is there anyone here that wants to CBT because of undiagnosed physical pain? For the past 3 years I've had severe chronic stomach pain, constant nausea, aches and pains in my arms and legs, permanently numb toes and fingers that burn constantly and a whole host of other issues. Been to see doctors had xrays but nothing has shown up so they just dismiss me and refuse any treatment even though I'm in pain. I'm in agony 24/7 and nobody can tell me what's wrong. I feel like my body is attacking me every second of every day. I can barely rise from bed most days yet people in my life think I'm being lazy and selfish. I'm just so tired of it all.
 
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sleepy dog

sleepy dog

Wizard
Sep 13, 2019
624
I search engined it. (symptoms = nausea, aches, numbness) Up came food poisoning, stomach flu, and amyloidosis. I am no doctor. It seems you need to try to get a diagnosis if it is 24/7.
 
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Emerald

Emerald

Despairing
Sep 16, 2019
74
I search engined it. (symptoms = nausea, aches, numbness) Up came food poisoning, stomach flu, and amyloidosis. I am no doctor. It seems you need to try to get a diagnosis if it is 24/7.
I've done a lot of searching too and it's so difficult to self-diagnose yourself. Can't be food poisoning or stomach flu because these wouldn't last for years. Possibly could be amyloidosis but I'll probably never know.
 
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K

Kam59

Member
Sep 7, 2018
47
Not had a tic bite ? Lyme disease ?
Autoimmune ?
Coeliac ?
 
chrijo

chrijo

done
Feb 8, 2019
329
Did your doctor examine your pancreas? Blood sugar level?

My first thought: Diabetic neuropathy.
 
Emerald

Emerald

Despairing
Sep 16, 2019
74
Not had a tic bite ? Lyme disease ?
Autoimmune ?
Coeliac ?
Did your doctor examine your pancreas? Blood sugar level?

My first thought: Diabetic neuropathy.
I've had blood tests, negative for coeliac disease, normal blood sugar, everything was normal, negative for diabetes. Not sure about lyme disease, I do have a lot of itchy skin but no rashes or redness which is common for lyme disease, don't think it's autoimmune either but hard to know! But thanks for the suggestions. I've always thought it could be diabetic neuropathy even though I've always tested negative for diabetes because the symptoms closely match.

As for having my pancreas examined getting these tests done take so long I could be waiting months or years for one test. The public healthcare system is soooo slow here :'(
 
k75

k75

L'appel du Vide
Jun 27, 2019
2,546
God, you sound like me. I'm so sorry. I know how difficult and frustrating it is to be in chronic pain with no answers and to have constant nausea. I have to take antiemetics just to get through the day.

I have half a diagnosis, but nobody can figure out the whole reason these things are happening to me.

I'd recommend having your amylase and lipase levels checked. It's just a blood test, and it'll tell if you're suffering from pancreatitis. Other ways they check out your pancreas are endoscopic ultrasounds and the different scans (MRI, CT, etc.).

Would it help you at all to describe my issues/causes? I don't want to crash your thread with sob stories, but maybe it would give you some ideas.
 
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Emerald

Emerald

Despairing
Sep 16, 2019
74
Thank you so much for the suggestions and I'm so sorry to hear about your health issues as well. It must be so awful to have to be so ill that you have to take antiemetics all the time I can't even imagine :aw:

Of course I'd love to hear more about your story/health issues. You can PM me if you like. :)
 
E

eve2004

DEAD YESTERDAY
Aug 17, 2019
578
I have nearly almost all of those symptoms also, probably not as intense as yours. I've seen a doctor but no one takes you seriously if you have anxiety and depression. Even obvious things like high blood pressure I was told its anxiety. Being dismissed and leaving in pain is worse for me than just living with it in the comfort of my bed.
 
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Emerald

Emerald

Despairing
Sep 16, 2019
74
I have nearly almost all of those symptoms also, probably not as intense as yours. I've seen a doctor but no one takes you seriously if you have anxiety and depression. Even obvious things like high blood pressure I was told its anxiety. Being dismissed and leaving in pain is worse for me than just living with it in the comfort of my bed.
Same!! Every time I go to my doctor my symptoms are always dismissed as anxiety/depression or the fact that I have aspergers and a lot of sensory issues. It's crazy that you were told it was anxiety for high blood pressure having it could mean you have an underlying health issue with hbp as a symptom!
 
k75

k75

L'appel du Vide
Jun 27, 2019
2,546
Thank you so much for the suggestions and I'm so sorry to hear about your health issues as well. It must be so awful to have to be so ill that you have to take antiemetics all the time I can't even imagine :aw:

Of course I'd love to hear more about your story/health issues. You can PM me if you like. :)
My problems started with gallstones. I didn't realize what it was at first, but it kept happening. It hurt very badly, not just around my stomach, but also in my back. I also became extremely nauseous and vomited all the time. I had to take an ambulance to the ER, and it turned out I had pancreatitis. Worst pain I've felt, honestly.

That became a cycle, pancreatitis and gallbladder attacks, so I had my gallbladder removed. But that didn't stop the problem. They determined the pancreatitis was caused when the bile ducts were blocked by stones, so essentially, my pancreas began to digest itself. By that time, permanent damage was done.

For awhile, I had gastroparesis because of damage from the surgery. That's mostly resolved, although sometimes I feel the symptoms coming back. That caused even more nausea and vomiting.

And because of all the scarring on my pancreas, I stopped making enough insulin and became diabetic. I'm constantly nauseous and usually vomit daily, so I have to take the antiemetics several times a day. Also pancreatic enzymes. I haven't had an attack in awhile, but I know it's just a matter of time. I have a lot of pain in my stomach, but also on the upper right side. My GI doctor is out of ideas, so currently he's having me try proton pump inhibitors and some sort of ulcer med even though I do not have ulcers.

Anyway, that's what caused my persistent stomach issues. We know what caused some of it but not really. It's looking like there's no way to fix it.

I also have the numbness, burning, tingling in my hands and feet. It's neuropathy, but in my case it started because of nerve damage from chemo. Then it advanced into diabetic neuropathy. I'm very scared it'll keep getting worse. You should do a consult with a neurologist for that. There might be a way to get relief. I'm on gabapentin for the neuropathy, but there are other treatments.

I also am starting to suspect my anxiety disorder is amplifying the GI issues. I definitely feel worse the more anxious I get. Anxiety really does affect blood pressure, too. I'm actually having a problem with that now.

I really hope you can figure out what's causing your pain. The thing that makes this so difficult is that all these diseases and conditions share symptoms, so it's often impossible to figure out what's causing what. I don't believe it's hopeless, though. It just comes down to endurance. How long you can make yourself search for answers. I hope this was a little helpful.
 
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chrijo

chrijo

done
Feb 8, 2019
329
Now you have chronic pancreatitis, right?

A destroyed pancreas fucks the whole body :-(

Anyway - thank you for sharing...
 
k75

k75

L'appel du Vide
Jun 27, 2019
2,546
Now you have chronic pancreatitis, right?

A destroyed pancreas fucks the whole body :-(

Anyway - thank you for sharing...
Me?

Yeah, it's chronic. I usually have baseline pain but then it'll flare up and send me to the hospital. It's been several months since my last attack, but I can't bring myself to hope it's stopped.

It's amazing how important that one organ is.
 
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Emerald

Emerald

Despairing
Sep 16, 2019
74
My problems started with gallstones. I didn't realize what it was at first, but it kept happening. It hurt very badly, not just around my stomach, but also in my back. I also became extremely nauseous and vomited all the time. I had to take an ambulance to the ER, and it turned out I had pancreatitis. Worst pain I've felt, honestly.

That became a cycle, pancreatitis and gallbladder attacks, so I had my gallbladder removed. But that didn't stop the problem. They determined the pancreatitis was caused when the bile ducts were blocked by stones, so essentially, my pancreas began to digest itself. By that time, permanent damage was done.

For awhile, I had gastroparesis because of damage from the surgery. That's mostly resolved, although sometimes I feel the symptoms coming back. That caused even more nausea and vomiting.

And because of all the scarring on my pancreas, I stopped making enough insulin and became diabetic. I'm constantly nauseous and usually vomit daily, so I have to take the antiemetics several times a day. Also pancreatic enzymes. I haven't had an attack in awhile, but I know it's just a matter of time. I have a lot of pain in my stomach, but also on the upper right side. My GI doctor is out of ideas, so currently he's having me try proton pump inhibitors and some sort of ulcer med even though I do not have ulcers.

Anyway, that's what caused my persistent stomach issues. We know what caused some of it but not really. It's looking like there's no way to fix it.

I also have the numbness, burning, tingling in my hands and feet. It's neuropathy, but in my case it started because of nerve damage from chemo. Then it advanced into diabetic neuropathy. I'm very scared it'll keep getting worse. You should do a consult with a neurologist for that. There might be a way to get relief. I'm on gabapentin for the neuropathy, but there are other treatments.

I also am starting to suspect my anxiety disorder is amplifying the GI issues. I definitely feel worse the more anxious I get. Anxiety really does affect blood pressure, too. I'm actually having a problem with that now.

I really hope you can figure out what's causing your pain. The thing that makes this so difficult is that all these diseases and conditions share symptoms, so it's often impossible to figure out what's causing what. I don't believe it's hopeless, though. It just comes down to endurance. How long you can make yourself search for answers. I hope this was a little helpful.
Thank you so much for sharing your story. :aw:

This was very helpful I now have a few more things you described that I can ask my doctor about. Did this all happen recently or over a period of years? I'm so sorry for all your troubles and I hope you find more answers. :hug:
 
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k75

k75

L'appel du Vide
Jun 27, 2019
2,546
I'm really glad. I get so upset at having such a broken body, but I'm really glad when my experiences can help someone else.

It's been about 5 years. Except for the neuropathy. I've been dealing with that since 2010, and it's just kept getting worse.

By the way, feel free to message me if you have any questions or anything. I'm always happy to help.
 
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Emerald

Emerald

Despairing
Sep 16, 2019
74
I'm really glad. I get so upset at having such a broken body, but I'm really glad when my experiences can help someone else.

It's been about 5 years. Except for the neuropathy. I've been dealing with that since 2010, and it's just kept getting worse.

By the way, feel free to message me if you have any questions or anything. I'm always happy to help.
I feel like I have a broken body too I feel like its attacking me all the time. Its hard to even get out of bed most days but as you said if you want to be better you shouldn't stop looking for answers.

For your neuropathy have you had injections to try and get rid of the numbness/burning? You don't have to answer hope its ok that I asked. I've been to a podiatrist and I remember him mentioning it as a treatment people get that takes the pain away. I think they may have been steroid injections but I'm not sure.
 
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k75

k75

L'appel du Vide
Jun 27, 2019
2,546
You can ask anything! I don't mind at all. I haven't tried any injections. In fact, that hasn't been mentioned by any of my doctors. So far, the only thing I've done is take gabapentin, which sometimes helps but I know I need more.

I'm supposed to see my neurologist for more tests on my feet so we can figure out a new treatment plan, but I can't seem to keep the appointments. I have a lot of medical anxiety and do stupid things like that.
 
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