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theshamanisright
@theshamanisright

Posts: 1
Joined: Apr 17, 2017

Chronic pain and trying to find the cause, going mad

Posted by @theshamanisright, Apr 16, 2017

Hi guys.hey
I am posting here because I’ve been in pain for 2-3 years now and I’m out of ideas.
My pain begins in my lower left abdomen and runs straight down into my leg and then radiates to my abdomen in general. I also feel the pain in my intimate areas. The onset is sudden and crippling. I’ve been to the emergency room 3 times now. They’ve always said that my lower abdomen is tender and a bit swollen and that my flank is tender too. Sometimes these episodes are accompanied by nausea and vomiting but mostly not.

I’ve had numerous ultrasounds, none of which revealed anything except that I have a fatty liver (I’m a vegetarian, thin, and I don’t drink.) and fluid in my cervical canal. I’ve had physical examinations of that area, which are very painful. I’ve had a laparoscopy which showed nothing. I’m sick constantly.
I’m at the end of my rope, basically. At the emergency room last night (I wasn’t admitted) the doctor said he knew something was wrong, but he didn’t know what. Very sorry, etc.

I don’t know what to do anymore. I don’t know where this pain is coming from but I know it has to have a cause.

REPLY

Hello @theshamanisright, and welcome to Connect. Two to three years of pain is certainly a long time and I can tell that you are frustrated. We have some other members on Connect who have experienced some of the symptoms, but from diagnosed underlying issues. If you don’t mind, would you tell us a bit more about what your physicians have ruled out?

@theshamanisright, were your physicians concerned about your fatty liver? Did they say your liver is functioning properly? If your physician admits something is wrong, is he or she planning to do more research? Have you thought about seeking a second opinion from another facility?

I would also like to tag our volunteer mentor @rosemarya to join this discussion to give her thoughts.

Hang in there @theshamanisright, we will help Connect you with members who are experiencing similar symptoms.

@theshamanisright, I am so sorry to hear that you have been experiencing this pain and confusion of no diagnosis. I want to echo what Justin has asked: Are your doctors doing a follow-up? Have they suggested a referral to any specialist for further investigation? I want you to know that it is OK to request a referral, or even to seek a second opinion..
You mentioned that you have a fatty liver. You do not need to be overweight or drink alcohol to have liver issues. Here is some information about fatty liver for you to refer to. http://mayocl.in/2onn679
I am not a medical person, so I do not know what is going on. But I want you to be able to read it.

Rosemary

There are a number of problems that are very difficult to diagnose. I had endometriosis for seven years back in the dark ages before diagnosing this had improved. Finally the doctor did a hysterectomy that diagnosed the endometriosis and removed much of it. Later I had Interstitial Cystitis, also difficult to diagnose, for about as long as the endometriosis. Finally my doctor did a cystoscopy which indicated the IC and treatment was then started. Then I had vaginal atrophy which is fairly easy to diagnose and for which I am now on vaginal hormones. All of these are very painful and the IC pain did run down my leg. All of these in combination are called pelvic floor disorder. In addition to this, I now have colitis and a disfigured coccyx. Sometimes you just have to be very persistent to get to the bottom of problems. I was going to say patient but it is very difficult to be patient when you are in pain. And many of these are called silent diseases because on the surface you look fine. Stay strong.

@Gray

There are a number of problems that are very difficult to diagnose. I had endometriosis for seven years back in the dark ages before diagnosing this had improved. Finally the doctor did a hysterectomy that diagnosed the endometriosis and removed much of it. Later I had Interstitial Cystitis, also difficult to diagnose, for about as long as the endometriosis. Finally my doctor did a cystoscopy which indicated the IC and treatment was then started. Then I had vaginal atrophy which is fairly easy to diagnose and for which I am now on vaginal hormones. All of these are very painful and the IC pain did run down my leg. All of these in combination are called pelvic floor disorder. In addition to this, I now have colitis and a disfigured coccyx. Sometimes you just have to be very persistent to get to the bottom of problems. I was going to say patient but it is very difficult to be patient when you are in pain. And many of these are called silent diseases because on the surface you look fine. Stay strong.

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@Gray, Thank you for sharing from your experience. And thank you for your words of encouragement.
I hope that you are able to continue to receive the care and treatment that you deserve.
Hugs,
Rosemary

@Gray

There are a number of problems that are very difficult to diagnose. I had endometriosis for seven years back in the dark ages before diagnosing this had improved. Finally the doctor did a hysterectomy that diagnosed the endometriosis and removed much of it. Later I had Interstitial Cystitis, also difficult to diagnose, for about as long as the endometriosis. Finally my doctor did a cystoscopy which indicated the IC and treatment was then started. Then I had vaginal atrophy which is fairly easy to diagnose and for which I am now on vaginal hormones. All of these are very painful and the IC pain did run down my leg. All of these in combination are called pelvic floor disorder. In addition to this, I now have colitis and a disfigured coccyx. Sometimes you just have to be very persistent to get to the bottom of problems. I was going to say patient but it is very difficult to be patient when you are in pain. And many of these are called silent diseases because on the surface you look fine. Stay strong.

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@rosemarya Thank you for your kind words and encouragement. Modern medicine is a wonderful thing. There are new medicines, treatments, technologies coming out daily. We may be discouraged by the lack of treatments for a particular problem today but there is always hope that a solution may already be a possibility. Stay strong.

I am so sorry for your suffering. Please don’t give up trying to get better. Just because no one has found what is wrong doesn’t mean there isn’t something wrong. I had an excellent internal medicine doctor help me. Many of these doctors are hard to get into but a good one can be a life saver. warmest wishes and hopes for better days.
Kristine

I can understand your feelings!
I am in constant pain more or less at times. Been to a Gastrologist, neurologist and pain specialist, and now to a cardiologist. There are no answers, only pills for pain.
I know, that it is not in my head. Nobody understands and is upset, when I cancel at last minute, because I am in a lot of pain. Headache, intestinal pain, dizziness and I know, there is something wrong with me!
It all started three years ago, after I had open brain surgery. Before I was never sick, was happy and loved life with my husband and family!
Now this is getting me down! Doctors tell me, I do not look sick and they can not see anything on the CTs and MRIs, though I lost 40 lbs and have pain constantly and stay home mostly.
Does anybody know, or has gone thru something like me?
The headaches are effecting my eyes
and neck now, that we were thinking of a spinal fluid leak, I am fine for several hours
and then everything starts, and I have to go home and lie down and it does get better then!

@edda

I can understand your feelings!
I am in constant pain more or less at times. Been to a Gastrologist, neurologist and pain specialist, and now to a cardiologist. There are no answers, only pills for pain.
I know, that it is not in my head. Nobody understands and is upset, when I cancel at last minute, because I am in a lot of pain. Headache, intestinal pain, dizziness and I know, there is something wrong with me!
It all started three years ago, after I had open brain surgery. Before I was never sick, was happy and loved life with my husband and family!
Now this is getting me down! Doctors tell me, I do not look sick and they can not see anything on the CTs and MRIs, though I lost 40 lbs and have pain constantly and stay home mostly.
Does anybody know, or has gone thru something like me?
The headaches are effecting my eyes
and neck now, that we were thinking of a spinal fluid leak, I am fine for several hours
and then everything starts, and I have to go home and lie down and it does get better then!

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@edda. Im so sorry to read about your pain and frustration looking for someone who gets what is happening and will search for the root cause. Why did you have the brain surgery 3 years ago? I don’t know much but it sounds as if your issues are related to the surgery you had. Are you still seeing the doctors involved with your surgery? Perhaps seeing another doctor outside the medical center in your community might help. Have you been seen at a Mayo clinic? I recommend doing that as they are very good and very thorough. Sometimes doctors are reluctant to search for a problem they may have inadvertently caused.

I hope you can find relief and answers. Perhaps someone on here will be able to help.
Gail B. Ledesma

So, sorry. I have many diagnosis. Getting an answer may not help. Some doctors just don’t know. Even when they do. Treatment is not helpful. But, in your case. You may get lucky. I suffer all over everyday for decades. I love my doctor. But, Yoga, Church, Therapy isn’t enough. Sever Fibromyalsia, Crohns, Ostomy, Reflux, Gastritis, IBS, Myo Facial Pain, TMJ, Bursitis, Ulcers for decades. Can’t tolerate medicines. I take small doses of pain killers. I have no emotional support. All my sons on Autistic Spectrum. Stress makes things worse. But, I live a Dr. Phil espisode. Advice please. Thanks

@1228angela

So, sorry. I have many diagnosis. Getting an answer may not help. Some doctors just don’t know. Even when they do. Treatment is not helpful. But, in your case. You may get lucky. I suffer all over everyday for decades. I love my doctor. But, Yoga, Church, Therapy isn’t enough. Sever Fibromyalsia, Crohns, Ostomy, Reflux, Gastritis, IBS, Myo Facial Pain, TMJ, Bursitis, Ulcers for decades. Can’t tolerate medicines. I take small doses of pain killers. I have no emotional support. All my sons on Autistic Spectrum. Stress makes things worse. But, I live a Dr. Phil espisode. Advice please. Thanks

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Hi Angie,
You do have more than your fair share of conditions. I’m tagging @sandytoes14 and @kdubois on this discussion. I think they may be able to offer some thoughts and experiences that they’ve had.

Angie, do you know why you cannot tolerate pain medications?

hello, sorry about the pain and no answers, have you seen a GYN ? Some of your complaints are familiar to myself , I had lower abd. pain and it would go to my leg in front when I had tube and ovary infections. Now this was 1963 so there not the advanced as today. After many antibiotics I still suffered then finally success, I had trichinosis, and I still had bad luck as at the time the only med to fix this was flagel and it was not available in USA. long story but I agree you need to see a new Dr. there are many more tests than ultrasound.

Thank you so much for that,really appreciate it.That sounds like I should have a blood test to check for infection,which no doctor has suggested in the five years.Thank you again for that.
Eifeltower.

@1228angela

So, sorry. I have many diagnosis. Getting an answer may not help. Some doctors just don’t know. Even when they do. Treatment is not helpful. But, in your case. You may get lucky. I suffer all over everyday for decades. I love my doctor. But, Yoga, Church, Therapy isn’t enough. Sever Fibromyalsia, Crohns, Ostomy, Reflux, Gastritis, IBS, Myo Facial Pain, TMJ, Bursitis, Ulcers for decades. Can’t tolerate medicines. I take small doses of pain killers. I have no emotional support. All my sons on Autistic Spectrum. Stress makes things worse. But, I live a Dr. Phil espisode. Advice please. Thanks

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@1228angela I’m sorry to hear you are in a great deal of pain. I have fibromyalgia, chronic neck pain, and arthritis so I relate to you. Have you ever thought of walking in a pool? I find that walking in water lifts my spirits, gives me gentle excercise and I meet people.Many communities have a YMCA that have a pool . I hope that is something you might check into.
Angie, could you tell us why you cannot tolerate pain medications?

@1228angela

So, sorry. I have many diagnosis. Getting an answer may not help. Some doctors just don’t know. Even when they do. Treatment is not helpful. But, in your case. You may get lucky. I suffer all over everyday for decades. I love my doctor. But, Yoga, Church, Therapy isn’t enough. Sever Fibromyalsia, Crohns, Ostomy, Reflux, Gastritis, IBS, Myo Facial Pain, TMJ, Bursitis, Ulcers for decades. Can’t tolerate medicines. I take small doses of pain killers. I have no emotional support. All my sons on Autistic Spectrum. Stress makes things worse. But, I live a Dr. Phil espisode. Advice please. Thanks

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@1228angela, I’m also interested in learning more about your intolerance to pain meds. What happens when you take them? In my case, I don’t get pain relief from them; Mayo figured out that genetically I don’t properly metabolize them.

I also have fibromyalgia and chronic pain, plus chronic headaches, and I’ve found that yoga and acupuncture work somewhat. Thankfully, my acupuncturist gives me a discounted rate because I’m not currently working. I also walk regularly, which my doctors are a proponent off; my body seems to hurt less when I use it. Warmth and heat actually help significantly.

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