Status
Not open for further replies.

verity

New member
Joined
Sep 29, 2014
Messages
2
Reason
Other
Diagnosis
00/0000
Country
US
State
NC
I hope you will read my story and give me your opinion. I am at the end of my rope. I am an almost 40 year old female.

In the past 4 years, I have been diagnosed with IBS-D, TMJ, and anxiety problems (GAD and panic attacks).

7 months ago, I started having lots of pain under my ribs. It would start on one side, the next day it would be on the other side. It would range from a pinching feeling to severe pain. I was concerned about pancreas/gallbladder issues, and went to my GI. I had CT scans, abdominal u/s, endoscopy, and tons of blood work. All came back fine.

As this was going on (b/c all of this took several months to happen), my anxiety got worse and I wound up in the ER several times thinking I was having a heart attack - just panic attacks. At one ER visit, they actually admitted me for observation and did a stress test with scans, a resting stress with scans, and monitored my heart and heart-related blood numbers. All was fine.

I was still having the pain, only now it was sort of roving pain - it might start in my ribs and then move to lower back. It might be under my shoulder blades. It might be in my neck. It might be in my thumb joints. Sometimes it's in both sides of my body, sometimes only one side. I started having shooting pains occasionally down my legs. The pain under my ribs seems to actually be between my ribs, if that makes any sense - pressing between my ribs is very painful, front and back. I feel a spot in my right back ribs where if I sit in a weird way, or sit in my car too long, I get incredibly bad pain like I have compressed something. Sometimes pain feels like muscle pain or spasms, sometimes it's like a zap of pain, quick, down my arm or leg or in my ribs.

I have had 3 abdominal CT scans, numerous xrays (chest, wrists, pelvic), the stress tests, a million blood tests, a full thyroid workup, etc. Nothing is out of the ordinary. But I am still in pain. Not every day - sometimes I have a good day. Usually I have tolerable days. Sometimes I have horrible days. It's been like this for 7 months. It's really hard to go day to day not knowing how I will feel. I'm nervous to plan anything - what if it's a bad pain day? I feel like I am not living my life.

I get minor relief from a few things. Hot, long showers relieve the rib pain for a while. Icy Hot or similar reduces the rib pain to a manageable pain. Tylenol doesn't do anything. Ibuprofen seems to help a bit but with a history of ulcer, my doctors are wary of having me on it very much. Muscle relaxants (skelaxin?) help to a small degree. My GI doctor put me on a small dose (25mg) of amiltriptilyne (sp) which has helped with my IBS immensely and seems to have had a small effect on pain? I see a chiropractor weekly and feel slightly better after those visits. Sometimes I can reduce pain in my back shoulder blade area or lower back by using a tennis ball against a wall to rub on those areas.

Any advice? I see my GP tomorrow for the (what feels like) 90 millionth time this year, and I want to press her for something that will result in some answers. What do I do? Who should I be referred to? What is wrong with me? I really need an answer. Because without an answer, I am left with what-ifs, and even though I've had so many tests, I still have a voice in the back of my mind that says "what if it's cancer, what if it's a heart attack, what if what if?"
 
Last edited:

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
Welcome to the forum. This pain you have described sounds a lot like Costochondritis. It is very painful and can cause chest and rib pain and can also seem to move around. I suggest you do a web search so you can read all about it. I also would suggest that you find someone to talk with like a therapist who can help you control your panic attacks and your general mental health. If all the tests have been done and they all come back normal, then there is good reason to consider fibro. Fibro has not cure at this time and no real way to prove it other then the tender points and a doctor's diagnosis. So please save your money and try to relax more and worry less.

Please read around the forum for ideas from members on dealing with symptoms and learning self-control of the problems you can control and what methods or medications to try for those you can not. We try to be very supportive and understanding and offer honest advice in dealing with this illness. I hope to see you around the forum and I am glad you found us. :)
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi there! Welcome to the forum and so sorry to hear about your issues. I really think you need to see a better doctor, someone specialized on internal medicine would be great. Also I really think you should do something about those panic attacks, trying seeing a therapist or find a support group, I'm sure there are many support groups for those suffering from panic attacks.

Also be careful with amiltriptilyne, I gained so much weight while I was on that. Alverine is much better and doesn't cause weight gain. Ask your doctor about it if you start noticing you are gaining weight.
 

verity

New member
Joined
Sep 29, 2014
Messages
2
Reason
Other
Diagnosis
00/0000
Country
US
State
NC
My GP has referred me to a physiologist? to confirm fibro diagnosis. However, that doctor can't see me until mid-November Meanwhile, the pain. How do people live in so much pain? Some days it's tolerable but some times it's just awful, awful, awful. It's hard for me to believe this isn't something horrible given the amount of pain it's causing. My GI doc said it would be highly unlikely for me to have some sort of abdominal cancer that hadn't shown on any of the scans, etc., but when I'm awake in the middle of the night in pain, that's all I can think about.

I know I need to see someone for my mental health, but am having trouble getting referred to someone.

Thanks for reading.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Don't worry, verity, a CT scan could have detected any kind of cancer in your abdominal area. But I'd really like to recommend you to stop getting so many CT scans, next time they suggest one opt for a MRI instead. CT scans expose you to a lot ionizing radiation, that's why every time I'm asked to get one I question the doctor a lot and try to see if there is a safer option. I only expose myself to ionizing radiation when necessary. I recommend you to do the same.

If you have a lot pain then try over the counter meds, they can help you a lot while you wait til mid November. As for the mental health referral... try as hard as you can to get it, if you have fibro you will need to find a way to cope with this!
 

Gelsemium

Active member
Joined
Sep 17, 2014
Messages
85
Reason
Other
Diagnosis
00/0000
Country
PT
State
Lisboa
That is so true, there are meds that can help relieve the pain, but the mental health is a real struggle, you need to stay positive or else you'll feel even worse.
 

JKerner59

Active member
Joined
May 1, 2014
Messages
80
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
FL
Hi verity...Very good advice from everyone who posted before me..Being in pain with no relief is anxiety provoking in itself...add that to an overall anxiety problem and you have the Perfect Storm. I am someone who had issues with anxiety my whole life...I reached out for help, worked with a therapist, and practiced lots of techniques to calm myself that I learned through a ton of research and reading...it works but you have to work at it every day until it becomes second nature.

I am very sorry that you a dealing with pain...everyone on this forum deals daily with varying degrees of pain that are so impactful to their lives...we may not have all the answers but we can certainly listen and provide support..you are not alone...we care!
 

Gelsemium

Active member
Joined
Sep 17, 2014
Messages
85
Reason
Other
Diagnosis
00/0000
Country
PT
State
Lisboa
That's true, it breaks me heart to see people suffering, but I always hope that things can improve, we need to be optimist.
 

Patty2

New member
Joined
Sep 25, 2014
Messages
9
Reason
Other
Diagnosis
00/0000
Country
US
State
MD
I am sorry you are in some much pain. When you are taking pain medication to help with your pain you are increasing the amount of "substance p" released into your body. "Substance P" which can cause you to be in more pain as your body builds up a resistance to the medication you are taking. You can feel pain in areas that you never had pain in before because "substance p". The pills are dangerous to your liver. A rub on pain relief cream helps to remove the need to take pills for pain relief. The information about "substance p" online is so technical I don't think the guys that wrote it even understand it.

More information:
Discover the Role Substance “P” Plays in the Body “Substance P,” often referred to as SP, is a neurotransmitter, and is the substance in your body that sends a signal from the site of pain to your brain, so you know that you’re in pain. The size of the injury determines the amount of
Substance P that is released into your system. If you stub your toe, you’ll feel less pain and you have less Substance P released into your system than if you break your arm.
To better understand how Substance P works, let’s say you stub your toe; that releases the Substance P like a fleet of cars that rush from the site of your pain to deliver a message to your central nervous system to feel pain. The cars rush to park in a space called an “NK1 Receptor” that says, “Ouch! My toe hurts.” The NK1 Receptor is a major part of helping your body to feel pain and that is what scientists have worked so hard to block off over the years. Pain maskers are used to shut down your neuro-pathways and the NK1 Receptor so that you don’t feel the pain. But the fact is body knows there is a problem and assumes that your brain is not getting the pain message because there isn’t enough Substance P, and it responds by making more Substance P. With increased Substance P in your body your brain finally gets the pain message.

You respond by taking 2 pain pills in instead of one or four instead of three or you move to a stronger pain
masker. This cycle continues until you become one of those 100 million plus Americans in Chronic Pain.
Your body is so full of Substance P that you are not able to do the things you enjoy doing, your quality of life
declines and get into the danger zone where the pain masking agents start to affect your heart, live, kidneys and intestinal lining.

At this point, something else terrible occurs: your body has spent so much time trying to build up enough Substance P to override your pain masking pills so you will know that your body is in pain that you end up with too much Substance P and a stubbed toe feels like a broken arm. This is how Chronic and Acute Pain are developed.
 
Last edited by a moderator:

stardisgate

Active member
Joined
May 26, 2014
Messages
51
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
AR
I am sorry to hear this. I know pain can be difficult. Especially when it moves around and no one listens. It makes you feel crazy. I really feel for you. Welcome to the fibro community. I really hope they figure it all out.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi verity...Very good advice from everyone who posted before me..Being in pain with no relief is anxiety provoking in itself...add that to an overall anxiety problem and you have the Perfect Storm. I am someone who had issues with anxiety my whole life...I reached out for help, worked with a therapist, and practiced lots of techniques to calm myself that I learned through a ton of research and reading...it works but you have to work at it every day until it becomes second nature.

I am very sorry that you a dealing with pain...everyone on this forum deals daily with varying degrees of pain that are so impactful to their lives...we may not have all the answers but we can certainly listen and provide support..you are not alone...we care!

Glad to hear that! I wish more people on here did the same, because in the long run all we can do is learning to live with this disease and nothing more, because being realistic this thing will never go away! It might get better, or even vanish for a few weeks or months, but it always comes back, at least that's how it has been for me and that's why I'm learning to live with it! Kudos to you for doing that too, living with anxiety sucks!
 
Status
Not open for further replies.
Top