Pain, left side of body, migraines and upper abdominal pain

[NatashaJones]

I have had burning ripping and tightness type pain and migraines starting around 4 years ago. Left sided pain only began spreading from my head to my neck and down my arm. My neck feel tight and stiff.  Burning now is all the way down to my toes and sometimes even my right foot tingles and burns. I have extreme fatigue. My left side face and arm twitches. Now it seems eating makes the pain worse.

I had a benign brain tumor removed 1 yr ago. Hoped that would take away the pain but no. Have tight burning chest pain and have to crack my chest, left neck, left wrist. Went to hospital for feeling of heart attack. Normal results. Had endoscopy. Had tender point right beside belly button. Said I had gerd. Started on Prevacid. Now I'm loosing my hair. Not sure why.  Thyroid normal.  Pain and fatigue is so severe I feel like I can't go on. Drs aren't sure. Went to so many. One neurologist at Cleveland said the pain could be psychological and he sure I'd be better soon the idiot. Managing right now with meds but I'd like to know what going on and cure myself! On lyrica.  I miss the fun energetic me!  I've never had shingles. I refuse to hear fibromyalgia. Drs use that when they can't find the answer.

[NatashaJones]

My dr wants me to consult with a vascular surgeon.  I think or I hope this is the answer to the left sided pain, fatigue and migraines.  Decreased blood flow due to compression of my celiac artery.

[NatashaJones]

Had a ct scan. Showed a distention and narrowing of my celiac artery. Also a decrease in size of my thorax? A few other things  That may causing my pain. Know more after my Drs appt. Thur.

[NatashaJones]

I'm a registered dietitian and I feel I have a good handle on my diet. I'm a vegetarian and although my diet isnt perfect, I eat better than most people I know. Thank for the suggestion.

[Jaybay]

How's your diet?  You'd be surprised how many neuropathy and other health issues are caused by nutritional deficiencies.  The reason I bring it up is your hair loss and the fact that your thyroid is normal.  That's a pretty classic sign of malnutrition.  It's odd how many doctors don't consider that when looking at a tough case that's been worked up six ways to Sunday.  I suppose they figure that when a person is of healthy weight he's properly nourished.  Shoot - even morbidly obese people suffer from vitamin and mineral deficiencies because they don't eat the right things.  Food may be abundant in our culture but much of it is nothing but trash.

OK, off my soapbox.  If you want to pursue this line of investigation your PCP is more than capable of ordering the blood tests.  I found out the hard way that B12 deficiency causes neuropathy - first in the hands and feet and then the rest of the body if the problem isn't addressed.  I still can't feel my toes and feeling may never return.  I have other serious nutritional deficiencies but the B12 and C have caused the most noticeable trouble.  Anyway, it's a shot in the dark but a simple blood test might give you some surprising answers.  Best of luck to you in your search for answers.  I know how frustrating it is to ride the medical merry-go-round.

[Tuckamore]

I do believe that MH has some affiliation with the Cleveland Clinic. They are one of thee best in the nation. You have selected a great facility.

My PCP and I believe that Fibro is a real disease. Like you we think that some physicians are too quick to DX Fibro instead of searching for the cause, which we all know can be time consuming and expensive. So it has it's place... after all other conditions have been ruled out.  

As I said it was a DO that DX me. Had you told me that was possible after the multiple specialties I consulted I would have poo-whoed you. Not only did I see one, I saw several in the same speciality through the years... a PCP had a correct DX within seven days of ever laying eyes on me. In my opinion it was close to a miracle. Right time, right place and a PCP that l-i-s-t-e-n-e-d with all her senses, education and skills, cried when I cried and was never afraid to hug me when appropriate. Those kind of ppl, let alone physicians are very hard to come by. I sincerely believe that I am alive today because of her.

I wish the same for you!!

Again nerves are near impossible to "see." Your pain really sounds like it has a neurologic base. I hope you will find a DX soon.

Please keep in touch. I'll look forward to your updates.

My Best,
~Tuck

[NatashaJones]

I have seen 3 neurologist, 1 neurosurgeon, cardiologist, gastroenologist, chiropractor. Have had MRI before my tumor was removed. Had MRI of cervical spine. I went to Duke to have my neurosurgery.  I thought by going to Cleveland clinic to see the "psychologist" neurologist I should get better help than WV. A D. O. is a good idea. I do agree fibromyalgia is a real disease but I think it is just a quick general diagnosis for real problems Drs can't Rx or don't truly understand the origin.

Sometimes I also have a a shortness of breath feeling on my left side too. Thanks for help and suggestions.  Any and all are greatly appreciated!

[Tuckamore]

Hello Natasha,

Welcome to the Pain Management Forum. I am glad that you found us and took the time to post, even though I know it must be painful.

I went through years of no answers... yes I too heard psychological pain... even drug seeker. One physician was so "kind" to explain that my brain wasn't perceiving the signals correctly ... he said it wasn't true pain signals but my brain thought it was pain and therefore I had pain... Another idiot!!!! I was almost convinced I was crazy. So I can relate and I know the anger and frustration that come with no DX and no answers for that pain that YOU know is real! My heart goes out to you.

Burning pain is usually indicative of nerve involvement. Medical science has made great advances but to this date no one can "see" nerve pain unless there's actual major nerve damage that reveals itself on an EMG. That doesn't always happen. There is so much about pain that the physicians and medical science simply do not understand. An astute physician will admit that is true.  

Please don't dismiss Fibromyalgia. I don't think your symptoms sound like Fibro but it is a true painful disease/condition. Gratefully I don't have it either... but it truly does exist. So do conditions like CFS (Chronic Fatigue Syndrome) and Myofascial Pain Syndrome. Have they been considered?

What tests have you had and what type of specialist have you consulted? It's possible that you have more then one thing going on right now. Pain can sort of "mess" together and be difficult to define.  

I don't know in which state you reside. In my state it is our PCP that follow and percribe for their CP (Chronic Pain) patients. Have you been to physicians associated with large teaching facilities or the nationally known clinics?  I would go outside the medical system you are currently in and seek additional opinions.

It helped me not to have past records (I have moved aways for a few years and I when returned home I went to a clinic 35 miles away).... I had no previous opinions, so no preconceived notions could be formed as they typically search old records... there were none. It only took one appt, one examination.... Magically I had a DX. New eyes, new clinic and a bit of thinking out of the box was all it took... seems simple but it was several years of pure agony!!  So I know it can happen for you. A new astute physician can make the difference... keep searching. Don't give up.... never give up.  

Again, your pain does sound like neuropathy. I assume you have consulted several neurologists. Have you seen a D.O. (Doctor of Osteopathy)? My diagnosing physician was an Internal Medicine D.O. She was an awesome newer grad that graduated at the top of her class, filled with knowledge and out to save the world. I wish that for you. You know the old joke. What do you call a person that graduates very last in his class in medical school, repeatedly fails examinations and has to retake them, removes the wrong leg and requires additional years of training??? A Doctor!  

So please keep searching for those answers.... and come see us often. Please be active in our community. We offer you our support and an "ear." I'll look forward to hearing from you soon.

Take Care,
~Tuck  

[namnam46]

Hi Natasha,

First, I want to welcome you to the Pain Management Forum and let you know that we are glad you found this Forum. I want to let you know that there are no Doctors on this Forum, only CP  {Chronic Pain}  Patients that help each other with our own expertise and experiences that we have developed through our own CP Issues.

I'm so sorry for all that you have had to endure with your undiagnosed pain!! It's so terrible when we can't get the answers that we so desperately need to have.  You are not alone here on MH, with not being able to find that diagnosis.  I'm sure that our CL, Tuck, will be along in awhile and she has experienced the very same problems that you have had in getting a diagnosis.  

I know you said that you have been to a Neurologist but have you had a MRI or CT Scan of the neck area? Sometimes a disc can be pressing on a nerve or disrupting it in some way and that can cause the burning and problems that you are having. Sometimes changing Doctor's to a different Neurologist can give you a "new set of eyes" on your problem and they might have seen this exact same problem that you are experiencing.  They might be able to give you some answers. :)  Do you have any teaching hospitals around you at all?  Sometimes a teaching hospital is the best place to find Doctor's that are willing to look "outside the box", so to speak.  

The best thing that you can do is to NOT give up hope that you will get that diagnosis.  
I'm sorry that I don't have any answers for you but hopefully someone else will come along that will be able to give you a new direction to go in.  

I wish you the very best and I hope that you will keep us updated here on MH. We are very happy that you have found our Pain Management Forum as we are here to give you the support that you need!!

I'll be looking for your updates and I wish you the very best.............Sherry  :)