My Story: Finally Getting a Diagnosis

My Story: Finally Getting a Diagnosis

In 2006, after receiving a procedure in my lower back to try and help control pain, I started getting an odd stinging sensation in my upper left thigh.  It was a small, oval area about 9 inches by 4 inches.  I really only felt it when I was standing, so I ignored it.  Bad move.

Within weeks, it was spreading.  Within a month, it was in both legs.  Later it was my entire lower body just below the waist.

I was in the Air Force at the time. The stinging had also started to include a bruised feeling, sharp shooting pains, and odd dull sensations in different areas.  The stinging was now there all the time and changed its location depending on what I did.

In the middle of this mess, I got new orders.

Larry Knight

Larry Knight

After moving to my new duty station across the country, I settled in and began trying to find out what was going on.  My new job included A LOT of standing.  At the time, every doctor was concentrating on my lower back.

My first appointment was not all that great.  I drove through a tropical depression to see a neurosurgeon.  The doctor told me that there was some slight arthritis and slight bulges, but nothing to explain what I was getting.  No pain medication was given either, since I was still on active duty.

I gave it a month and scheduled another appointment when the pain didn’t stop.  This time, I got a different doctor.  She had the same answer; there wasn’t anything she could do.  She did refer me to a neurologist, chiropractor, pain management and a mental health specialist.

Aside from the pain, I was now having problems with fatigue, memory loss, and problems concentrating. I carried a spiral notebook which I named my “memory” and wrote everything down in it for work.  I also had a few blackouts that I couldn’t explain.

All of these issues were taking a heavy toll on my depression.  I went to a mental health therapist who evaluated me to see if the pain was “in my head.”  That came up negative in his opinion.  He suggested bio feedback and a few other treatments.

We were having financial problems and I picked up a second job delivering pizzas.  That only added to the issues.  At work, I was in a position that was not in my intended career field.  The Air Force doesn’t like that.  So they moved me to a job inside my career field.

At the time, I was in full medical appointment mode.  The joke was that I would go to one appointment and it would spawn three more.  Neurology had no answer for me.  The chiropractor wasn’t working.  Pain management wasn’t working, so I was sent to physical therapy.  When I got to physical therapy, I told them that the stinging pain now included my groin.  They sent me to the ER right away.  This happened three times.

The pain was still ramping up in intensity. By 2007, I had to quit my second job as it was way too painful to keep up.

In my new Air Force job, I was gone three out of the first five days.  I came back to work the next Monday and was met by a Navy Captain, who wanted me to write down every appointment I had so he could check with my doctors and make sure I wasn’t lying.

On Tuesday, I was asked if I had every discussed going before a medical board.  On Wednesday, I was reassigned to my original work station.  I knew the writing was on the wall then.

I went to a course that the military offers when you are getting out called TAPS (transition assistance program).  Most of it did not pertain to those of us getting out for medical reasons.  When they had local hiring agents come give us tips, I asked what I was supposed to say about my medical issues.  I was told to not say anything about them.

My only hope was filing for VA disability.  They painted the process as being very easy and even gave tips on how to get higher ratings to qualify for disability.

In July of 2007, I was put on the temporary duty retirement list.  I was to be re-evaluated every 12 to 18 months to see if they were going to kick me out of the Air Force or take me back in.  I at least got to keep my base privileges and health coverage.

I filed for VA disability compensation.  I knew I would not be able to work.  Memory problems still prevailed and the pain was excruciating.  I visited the VA hospital, since the local base did not take retired members.

The nightmare continued.  I had to go over every test I had before, every specialty I had seen before, and every treatment I tried before.  The only difference was, I got pain meds. After much experimentation and many failures, I was put on hydrocodone.

On the financial front, we were struggling.  I went from $1,750 every two weeks to $1,100 a month.  I tried to work with our mortgage company and with the VA.  Both told me to call the other and refused to work with us.  I sent in what I felt I could, trying not to take food off the table for our very young kids.

In 2008, all of the partial payments I had been sending to the bank got sent back.  We knew what was next.  The bank seized our house. We ended up moving into my wife’s parents’ house and filed for chapter 7 bankruptcy.

I went to the VA where we live now and was in for a shock.  During my processing appointment, the doctor told me he wasn’t interested in hearing me explain my symptoms!  He wanted me to repeat all the tests I had completed at least a dozen times.  I tried for a month to change doctors and had no luck.  I decided to go to the base, since the local base takes retired members.

Now comes the change of luck.  The doctor I got was VERY good.  He actually listened! He decided to work with my pain medicine and get me on something more appropriate.  A test on my liver showed that it was turning fatty helped in that decision. He also decided to test for something new: small fiber fibromyalgia. He took 2 skin plugs from my left leg. About a month ago, I got the news.  I do have small fiber fibromyalgia.

This is both good and bad.  Getting a diagnosis helped with acceptance, but there is no cure on the horizon. I’m very sensitive to heat and overheat easily.  I even get daily hot flashes, migraines and vertigo. I have found a natural remedy that helps with the vertigo and migraines, in the form of feverfew.  I’m working on growing it in the front lawn.

My past active lifestyle is a thing of the past.  I can ride on a full suspension mountain bike on regular roads though.  Anything without a suspension hurts.  I grit through and do things around the house as well.  However, I usually have to take a lot of breaks.

I filed for social security disability, so that we could get out of the in-laws house.  That took a year but, I finally got that. I’m also finally off of the temporary duty retirement list. I was lucky enough to be rated high enough to keep base privileges.

I wish doctors would listen more.  It seems that you get 2 or 3 appointments with them and they decide it is all in your head.  I had one neurologist insinuate it was in my head while telling me I have an “aura of sadness” around me.  Well duh, I’M IN PAIN 24/7.  How happy would you be?

The other thing I want doctors to know.  We’re not after the high when we’re in pain.  You know what?  We don’t even get high.  I have yet to get a high off of any dosage I’ve ever been on for pain.  I’d be off of it in a second if I thought I could take the pain.  But I just can’t.

12_7.jpgLarry Knight lives in Medical Lake, Washington

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Larry Knight

There are 11 comments for this article
  1. Stephen S. Rodrigues, MD at 7:36 pm

    @Lknight; Over the years when I get a new patient in severe chronic pain give me the history of their pain. They will recall a “key” event. I think it is important to let them know that I view things differently, so what is described as the event, I see as an accumulation of pieces to the puzzle. Once the final piece gets put in place, then the pain syndrome appears. A lot of folks in pain are teetering on the brink, then if you add in a slip, fall, car accident, argument, a pat on the back, a flu syndrome or a surgical procedure will tip them over the edge … into the the miserable dx call Myofascial pain and dysfunction as per Janet Travell-David Simons.

    @Tonya, we do have therapy for chronic pain see my other notes. Doing nothing will not work!! Hands-on Physical therapy will treat this pain, but over the decade we have taken their power and anonymity away, cuffed their hands and as a result more misery. In the place of this very effective medicine, we now try to fix pain with misguided and failure prone pain procedures.

    Myofascial Therapy is safe and will work on all pain issues!!! From cancer pain, Fibromyalgia to facial or Trigeminal nerve pain. Obviously the cancer pain patients are still required to get cancer treatment, but the pain meds can be decreased and the cancer patient will feel much more at peace and have a better quality of life.

    FM is a devious beast! If you really quiz patients closely you will find that before it gets full blown you can find clues early in the development. I treat what I call “below radar” FM with the same force needed to treat the full type … I don’t wait.

    In early and full blown FM, allergies and sensitivities is a major clue in my book!!! Sinus issues, headaches, insomnia, leaky bowels and just plain weirdness clue me in … I start therapy and wellness at these first signs.

    @Catherine. The treatment for metal toxicity is THERAPY. Myofascial Release Therapy!! See my other posts.

  2. LKnight at 9:46 am

    Susan:

    My problems began after a radio frequency ablation on the lower back. I brought it up continuously while trying to figure out what was wrong. Everyone told me there was no way, as the RF ablation was not the right height to explain my pain. That was after having multiple epidurals, codal (I can’t remember how to spell that properly) shots and facet joint injections. At the time, the pain was only in my lower back. Surgery wasn’t done until 4 years later, when I slipped a disc in L4-L5.

    Dr. Rodrigues:
    Thank you for your link! I will have to pick that up. I’ve been trying to find more natural ways to help manage pain then to just throw more pain meds at it. I’m hoping to try and do yoga aimed at injured people as well. In my opinion, your other comments were right on target as well. It was my experience in a nut shell. It all boiled down to “The machines says you’re good, so you’re good. Now go away.” Pain management did nothing. They tried bio feedback but, it had no effect. Once that failed, they gave up and sent me to physical therapy.

  3. Catherine Nichols Pogorzelski at 9:18 am

    If you have had MRI contrast in your workups, you may need to get tested through Mayo Medical Labs. ask your PCP to go there and read about Gadolinium, NO MATTER WHAT YOUR KIDNEY STATUS IS RIGHT NOW> This Gadolinium retention is happening in patients with no known nephrogenic connection whatsoever! I have supposed healthy kidneys and have high amounts of Gadolinium contrast in my urine and “some” found in serum 2.5 years AFTER my last MRI and I have developed Systemic Sclerosis. THIS IS NOT A COINKY-DINK! Hold off on the dermal biopsies unless you do have some lesions/tightening tissue on shins or anywhere in the body that popped up from nowhere, out of the blue. MRI toxicity is a burgeoning healthcare issue. if you test positive in serum/urine, then you get a dermatologist to do some dermal biopsies according to the proper testing methods, this is NOT something done normally within everyday practice but should be done if you do test positive, Good LucK! PLEASE let me know how oyu are doing in future! http://www.mayomedicallaboratories.com/test-catalog/alphabetical/G Gadolinium, 24 Hour, Urine
    Gadolinium, Dermal, Tissue
    Gadolinium, Random, Urine
    Gadolinium, Serum
    Gadolinium/Creatinine Ratio, Random, Urine

  4. Tonya Rich Harrell at 11:14 am

    I just keep praying for some kind of solution other than pain meds that damage other parts of my body

  5. Tonya Rich Harrell at 11:13 am

    I have had FM for going on 5 years now and last year was diagnosed with rheumatoid arthritis I filed for Social Security and had a long term disability insurance from my job but have not collected on either it is getting very hard financially ;having to go on food stamps now. fighting to keep some kind of medical insurance so I can keep my medicines and go to the doctor. I need help doing everything all I can do is take my medicines at least live another day to love my family

  6. susan at 9:20 am

    Sounds like your problems began after the back surgery. Is it possible you could be allergic to something they put in your back? Also, it is possible that you did not need the surgery in the first place. I find it horrendous that unnecessary surgery is done so often. Your symptoms do not sound like fibromyalgia. That’s why I am bringing up the allergic thing. I know someone who was allergic to nickel and didnt realize the fusion she had done had nickel in the rods. Just a thought…..

  7. Stephen S. Rodrigues, MD at 7:28 am

    I know this will seem odd but I actually feel as though I have to apologize for your journey of pain, misunderstanding and confusion. Being in medicine for 30 yrs, I have seen how it has devolved from a hands on discipline to mostly high tech and evidence based. There is not much “touching” anymore.

    If this was even 30 yrs ago a doctors tools were simple; ears, eyes, nose, hands, conversation, understanding and heart. If you did not have an emergent or urgent disease, you were given to the Physical Medicine and Rehab (PM&R) department. The therapist would have poked, prodded, twisted, kneaded and massaged your body and actually you would have gotten better. NO biopsy needed. The touched would have ignited the healing that your flesh and bone needed.

    Today we have no P M and R departments they are Pain Management Departments full of high tech devices, doohickeys, medications and unfortunately no touching.

    If you are curious to know why “touch” is so vital to the human body and well-being, you should read; http://www.amazon.com/Fibromyalgia-Chronic-Myofascial-Pain-Survival/dp/1572242388/ref=cm_cr_pr_product_top/185-0628868-1576857

  8. Catherine Nichols POGORZELSKI at 8:55 pm

    If youve also had one ir more MRIs with contrast & you have great dr willing to Do just a few more dermal biopsies, and have issues with tightening skin areas areas if systemic fibrosis skin that just “does t look right” get urine and blood tests first for Gadolinium contrast-it’s STILL IN ME 2.5 years AFTER THE LAST CONTRASTED MRI. These tests have to be sent to Mayo medical labs they are anot run if the mill labs.
    IF you hav been poisoned we have great website over at Yahoo Groups, mention my name!
    Cathy

  9. Kay Redmon at 8:50 pm

    Even though Fibromyalgia has been well know in the medical circles for many years, it is still not a topic that is well tolerated & a lot of Dr’s still try to tell people that it’s all “in their head”. Having a good Dr is very important, someone who does know that you are really suffering & tries to help in any way possible, even if it does put you on the medical merry go round for years. After a definite diagnosis is made, life does not become easier, you do get the treatment required for the never ending pain, but you are still left with the fatigue, brain fog & the inability to perform the most basic tasks. Your working life is finished, people have little or no understanding of the condition & the most common remark you hear is “You look so well” implying that things cannot be to bad, so you learn to suffer in silence. Joining a FM & CFS group is the best thing you can do. These people do understand what you are going through because they themselves are sufferer’s. You do have to be diagnosed as suffering from these conditions & because every member is a sufferer, everyone has a say as to how they manage, the treatment (or lack of it). It is very helpful because everyone is in the same boat & they can exchange idea’s & tips that can help you cope. Generally it’s just about helping one another in any little way that we can. Of course, not everyone is exactly the same & what works for one, may not do so for another, but just being able to talk to people who know what it is like makes it very worthwhile. No one, knows the feeling unless they are in the same position. It also helps with your self esteem as you are not judged. At times, you are made to feel as if you were a “leper”by your peers & the medical fraternity as well. It’s something you have to learn to live with & hope you find the right management team, as it’s something that is now “your life”. Something that is now you & knowing that there is not going to be any change in the near future, you do learn to cope with it..

  10. Becky at 4:07 pm

    Nicely, done. Hasn’t the medical community gotten past a diagnosis of ‘hysteria.’ This is not 1913.

  11. Rebecca Gavin at 3:37 pm

    You tell it, bro. Thanks for sharing your experience.