Question
I really need help. I have been going through severe pain for 10mos and have been through what some doctors have called the "million dollar work-up" and they still do not know what is wrong. I am at my whits end and past my limit. It is constant, never goes away, and it is severe and I just seem to be getting worse and worse and the doctors just seem to have a non caring attitude most of the time and put me off, I have been to so, so many doctors.

When it started, it was my day off of work and my husband and I were just laying in bed waking up watching tv, and about 20-30mins later all of a sudden in my right lower abdomen I got this outrageous pain and it just radiated around my side to my lower back, it has been severe and worse since then (Feb 19,05). Since that day it has been nothing but hospitals, doctors, doctors, and more doctors. I have been misdiagnosed several times, first time in the ER that same day after being in there over 12hrs and then they said they actually said they didn't know but they thought it was a kidney stone that already passed. I have had probably 1000's of tests and proceedurs, also I have had 2 surgeries---1st one was on my kidneys, bladder and right ureter because it was dialated and the Urologist put a stent in the Ureter (was taken out the next day due to too much pain with urinating and such, had to be taken out). Then I was in the hospital for 10days and had extensive tests done and had an appendectomy done (even though it was fine they took it anyway). They did find a bulged disk in my spine and would not check into it saying that it was "too low to cause any pain". I do not believe that at all.  I have had my kidney's thoroughly checked with so many proceedures and tests with nuclear medicine. All came up good. Gallbladder tests as well. Was sent to a GI doctor and had a colonoscopy, endoscopy, and endoscopy capsule, all came out well except was diagnosed with Gastritis and I have IBS. I also have been suffering with dibiitating migraines for years also, one-sided as well, right sided also, strange.

In recent months, I have been to pain doctors, Duke hospital, and physical therapy. All my visits to Duke did not help me much, in the blood work that they did they said they knew I had a lot of inflammation, but they just didn't know where, I kept telling them where. The last pain doctor gave up on me as did a lot of other doctors and cancelled a spinal proceedure (some kind of steroidal epidural, in the epiduras part of the spine--they weren't too forthcoming on the info), and would not give a reason and was very unprofessional. The physical therapy didn't help in fact it honestly has made me worse if that is possible. I am seeing a new pain doctor and am praying that he can and will help me find an answer. I am ready to give up but I know I can't. A lot of times I can't walk, my hip and back, and leg are so bad my husband has to carry me and I cannot walk without a cain, I am only, well today, I am 29--it's my birthday--this year it is just another day.  My feet get tingling and numbing so badly they hurt and most doctors do not know what it is, neuropothy ruled out. Had EMG tests done (nerve conduction tests), and that was fine also. I am so baffled and confused that I have had so much done to me and cannot find out what is wrong. I pray and I feel so lost. I loose so much sleep and hardly eat am always dizzy and constantly have nausea and headaches/migraines. My tailbone is crooked and is totally off. They have said that I have a pelvic tilt and am misaligined, but still am not sure, there is more to this story still. At the beginning there was so much blood in my urine 2+ and the Gyn and others could not tell me why. Thought maybe ovarian cancer, have all the symtoms, no apparantly not. Now I keep breaking out in all these rashes am itching just so many symtoms that just do not add up.....

Where should I go next and what should I do? I am pretty much bedridden and going crazy, haven't worked or driven since the day this started.

Thank you for your time and imput,
Mimi

Answer
Mimi,

I know how frustrated and at your wit's end you must be. I've been there. However, and I'm sorry to say this because I know you've heard it so many times, I'm not sure I can give you the help you so desperately need. I will throw out to you every idea I have, and perhaps one of them will come to fruition for you.

You don't have any of the classic symptoms of chronic fatigue syndrome or fibromyalgia, which is where my expertise especially lies, but it's obvious that your pain is both chronic in a long term sense and acute as well. So my first thought was a pinched nerve. I know that sounds like a very simple explanation for your array of pain, but nerves are such an essential and vital element of health that even one pinched nerve can cause a variety of seemingly unrelated symptoms. You mentioned the pain came on very suddenly, and that you have inflammation; these are also signs of pinched nerves. I don't know exactly how a pinched nerve is officially diagnosed. I assume you've been to a neurologist and a neuropathist. If you haven't, you should.

To be completely honest with you, if I were you, I'd head to Mayo. They may not have been able to help me, but they have done wonders for many others, and something about your symptom list makes me think they might be able to help you. Duke's a good place; I went to Duke as well. But, due simply to how much money and reputation Mayo has, it attracts more talent and thus has a wider variety of specialists who may be able to determine your illness.

The blood in your urine is particularly worrisome to me. Like you said, none of your symptoms match up, or make any sense at all when put together. I certainly can't understand what is going on with the sudden tailbone crookedness.

And also, honestly, it's my personal opinion that because your symptoms are so unusual, Mayo will take an interest in you and work harder towards helping you. It's not fair, but use it to your advantage.

In the meantime, I suggest you see a naturopathic doctor, if you're not seeing one already. I suggest this to all people who suffer from chronic pain, because natural medicine is what healed me. A naturopathic doctor, or homeopathist, can do many things for you, including acupuncture (which is a walk in the park, compared to what you're going through), prescribing herbal supplements to heal the body naturally, and a variety of other things. Trust me, I was very skeptical at first, but natural medicine turned out to be my salvation.

Oh, also you mentioned you had a pain doctor who had considered a pain epidural for you. Those pain epidurals are wonderful things; similar to the kind you get during childbirth, they involve the insertion of a needle between the discs on your spinal column which releases a pain agent and is then withdrawn. They do dramatically decrease the pain in most patients, but are only a short term solution that must be repeated to regain the same affect, and can only be performed a specific number of times a year for safety purposes. If you are able to find a pain doctor you like and trust (and I stress the like and trust parts; it can be very disconcerting to have someone you do not trust inserting a needle into your spine.

I think those are my best and most viable ideas; I'm sorry I can't come up with more. Your symptoms are very unique, even within the realms of chronic pain. But I firmly believe that Mayo might have your answer. And if you can go in for it, natural medicine might work just as well for you as it has for me. If you do decide to try it, make sure you find a licensed practitioner; some are even medical doctors, but an MD isn't required for a naturopathist to be qualified or specialized; it's just a bonus.

I wish you all the best. I don't know if I've been able to help, but I hope that in some way I've been of use to you. You've already taken many steps in the right direction by taking charge of your pain and seeking help in every way you can; that's admirable, and a lesson I did not learn until late in my illness. If you have any other questions, please let me know and I'll do my best to answer them.  Don't give up, I know you'll make it through this; from the way you composed your email, I can tell you're a strong person.  There's an answer for everyone, and you'll find it. Good luck, Mimi, and God Bless.

Sincerely,

Celeste