Category: Chronic Pain Sucks!

It’s not my fault I have Lyme Disease

It’s not!  It’s really not my fault!  I don’t even know how or when I got it.  But I feel like it is my fault because I have a disease that most doctors don’t believe exists.  It’s not my fault that doctors are uneducated in Chronic Lyme Disease or Post-Treatment Lyme Disease, Co-Infections and all the other things that come with it.  But it’s really not fair to treat someone so poorly because they have it.  I would be treated so much better if I had Cancer.  Lyme Disease is much worse than Cancer!  You are thinking,…NO SHE’S CRAZY!  But it’s true.  You CAN die from Lyme Disease.   Yes, that is true.  It’s a scary disease.  So let’s compare Breast Cancer to Lyme Disease.

American Cancer Society   – The American Cancer Society’s estimates for breast cancer in the United States for 2016 are:

  • About 246,660 new cases of invasive breast cancer will be diagnosed in women.
  • About 61,000 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
  • About 40,450 women will die from breast cancer.

In 2013 the CDC updated it’s statistics stating that they now estimate over 300,000 new cases of lyme disease each year.  And those are just the reported cases.  Unfortunately, due to the lack of education of medical doctors thousands and thousands of people are misdiagnosed.  Check out these links:

LymeDisease.org

CDC

Bay Area Lyme Foundation

The number of people that die from Lyme Disease is not clearly known because most cases of Lyme are misdiagnosed as something else like, Fibromyalgia, ALS, MS, RA, CFS, Alzheimers, Crohns, Psychiatric Disorders, any auto-immune disorder and numerous others diseases.  That’s why it’s called The Great Imitator”  Check out New York Times 1993,  Under Our Skin Article 2012,  and see Dr. Horowitz, MD  and many other books, books and more books.

If I had Cancer no one would even think that I was faking the crippling pain and nausea.  No one would ever questions that I wasn’t suffering.  No one would ever think I was making it all up.  No one would treat me like an addict just seeking drugs.  Seriously, think about it.  No one!  Not Doctors—Not Friends—Not Family—Not Co-Workers—No One!  Have you ever doubted anyone when they told you they had or have Cancer.  No, I didn’t think so.  Have you ever doubted anyone when they got sicker while doing chemo treatments.  No, I didn’t think so.  That’s why Lyme is worse.  There is NO support!  There is only inadequate medical care and uneducated and unsupportive doctors.

So here’s to all those medical professionals and others who think I have something else besides Lyme. Or think that Lyme is easily treated.  Or think I make up this pain.

  1. I have been to numerous doctors before seeing a Lyme Literate MD
  2. I have had doctors rule out other things you think I have.
  3. No, the lab that did my lyme testing is not fake.
  4. I have spent a year educating myself about Lyme Disease and I know a lot more about it than you do.
  5. My pain is real!  I had a life and a career before getting daily migraines 21 years ago.  It’s not my fault my body is on fire and no one has figured it out yet.
  6. I have tried many daily drugs to lessen my pain and they DO NOT WORK so I need pain meds.
  7. I look fine to you because I fake it!  I lie about how I am doing because most people really don’t care when they ask “How’s it going?”  or “How are you?”  We all know that is just a common meaningless gesture.
  8. I am not an addict seeking drugs.  I am crippled and can barely walk without pain meds.  I feel like a “Walker” because I run into walls in my house because I am so feeble and ready to collapse most of the time.
  9. Because Lyme comprises my immune system I have many other illnesses but I still have LYME!
  10. Most treatments are not covered my insurance because the CDC determines treatment courses and they believe one course of antibiotics is enough.  Lyme is not easily treated and cured.  It’s complicated!

As you can see the number of reported cases of Breast Cancer and Lyme Disease are around the same each year.  But remember many cases of Lyme are not reported because they are misdiagnosed.  Have you read about Kris Kristofferson?

Here’s an interesting article that explains some of the controversy of Chronic Lyme

 Here is another good article about the controversy of Chronic Lyme

So to those medical professionals who still don’t think I have Lyme Disease, what do you suggest I do?

  • Do you think I should start over and re-do tests that came back negative?
  • Do you think I should just pick a diagnosis that fits in your box?
  • What do you expect me to do when I receive negative test results for the things you think I have?
  • What do you expect me to do when the pain is real and I’m told it’s not and that I need psychiatric meds?
  • What do you expect me to do when I am crippled with pain and no one will help me?
  • What do I do when the only tests that come back positive are for infections called lyme disease and lyme disease co-infections.

Medical Professionals:

  • Please get educated!
  • Please stop treating me like a drug addict.
  • Please don’t rule out Lyme Disease as a diagnosis for other patients and send them to a LLMD.  Don’t do the testing yourself.  You don’t know what you are doing!

I wish everyone could spend ONE day in my shoes to develop some compassion.  You would also begin to understand what fatigue and pain really is and learn that most days I feel like I am going to die.  Because I can tell you you have NO CLUE!

 

Beautiful Song by Marina Morgan 

Read some of the Myths of Lyme Disease

Lyme is a huge epidemic and the denial by our government is killing people like me.

I have Lyme Disease Educational DVD’s I am happy to lend to anyone interested

 

 

 

 

#ChronicPainSucks: Part VIII

On October 6, 2015 I went to see [6] Melissa McElroy, a Nurse Practitioner in Dr. Strickers Office in San Francisco.  They had a lengthy questionnaire and I spent an hour with Melissa discussing all my medical issues and getting an exam.  Her initially thought was that I have the typical story of someone with Lyme disease but wanted to run blood tests.

I had 7 test tubes of blood taken.

Lyme and co-infections, diabetes, hashimotos and many other blood tests were done.  But unfortunately it takes one month to run the lyme tests.  In the mean time, I had a lot of anxiety about everything.  I was happy to get all the blood tests done but anxious about the unknown.  Not knowing what’s wrong, having so many doctor visitors and given so many different diagnosis’s is really overwhelming and exhausting.

So at this point I have seen 6 doctors not including my Ex-Psychiatrist.  I’ve have also been given 5 different opinions.  #Fibromyalgia, #L5 pinched nerve, #Repetitive stress injury, #Thoracic Outlet Syndrome and possibly #Lyme disease.  

And the story continues……………..

#ChronicPainSucks: Part V

In between doctor visits I saw my PCP who put me on Nortriptyline to help the pain.  It’s an anti-depressant so at least I’m not becoming depressed from all of this pain.  Nortriptyline took one month to work and helped for one week.  After one week I began waking up with burning pain again.  Now I was waking up with 4-6 level pain.  But, WHY do I have this pain?

The EMG came out fine; no nerve damage but I still don’t have answers.   Trying to find out what is wrong with you and going to see so many doctors is exhausting and overwhelming.

So I met with Dr. Smolins at Remedy Medical to plan the next steps.  Dr. Smolins couldn’t  figure out what was wrong with me and didn’t want to just keep giving me pain meds.  He doesn’t work that way.  Which is good because I want answers.  I really felt that something deep inside me was wrong.

**On my first visit to the Rheumatologist I asked her if I possibly had Lyme disease.  She immediately asked if I got bit by a tick.  I said I don’t remember getting bit so she said NO you don’t have Lyme disease. ** 

So I told Dr. Smolins that I think I have Lyme disease.  He recommended going to Dr. Stricker in San Francisco, Dr. Stricker and he wanted me to see a neurologist Dr. Newkirk for other possibilities.

Why did I think I had Lyme disease?  My brother Dan has a friend that has it and the more I heard about her story the more I thought it was possible I had it.  And at this point the pain was crippling and without pain meds I couldn’t even walk.  So I contacted his friend Kelly and she thought I had it as well.

So lets find out…………………….

#ChronicPainSucks: Part IV

Someone once told me to remember that 50% of the doctors graduate in the top half of their class and 50% graduate in the bottom half.  

So instead of going to Stanford Pain Center I found Remedy Medical Group in Redwood City, California.  If you suffer from chronic pain I highly recommend them.  They have an office in San Francisco too.   [3] Dr. Smolins and Dr. Date are great.  Dr. Smolins was the first doctor that listened to me.  He also was very familiar with neuro-stimulators.  Different ones from mine but most doctors don’t know about them at all.

Dr. Smolins didn’t agree with the diagnosis of repetitive stress injury but said I could possibly have a pinched nerve but I didn’t really have the typical signs of having it and that would not explain my upper body pain.  YES!  That’s right!  He thought that possibly I have Fibromyalgia but I didn’t have the typical signs for that either.  Here was The Plan:

  1. Rule out that my implant is causing the problem.
  2. Get an X-Ray of my neck
  3. Talk to Dr. Bulger in Dallas to see if he thinks it might be the implant.
  4. Give me pain meds to get through this until it’s figured out.
  5. Do a nerve test called an EMG

So by now I’m up to 15-20mg of Norco a day.  That’s a lot to take in one day.  I have a high tolerance for pain medications but at this point I was waking up every day with level 9-10 burning pain everywhere.  Hands, arms, palms, legs, calfs, bottom off my feet and my back.  Everything but my head because my implant keeps the pain in my head away.

So getting the X-Ray was easy but doing the nerve test was not.

Dr. Elaine Date conducts the nerve test.  It took 3 unpleasant visits to get the test done.


Electromyography (EMG)

See WebMD for more information

First Visit:   The easy part.  Electrodes are places on you and a metal tool is used to send a signal to the nerves.  Your hand will jerk and nothing hurts.

Second Visit:  The second part of the test is EXTREMELY painful.  The doctor sticks a needle into your muscle and touches a nerve.  The nerve is touched and the needle is moved and you have to move that part of your body.  My husband came with me for the test and it’s a good thing.  I had a VASOVAGAL reaction.  My medical friends will know what this is.  Basically, The extreme PAIN caused me to almost faint.  I was laying down but Dr. Date had to stop the test.

Third Visit:  I received one valium pill before the test so I was a little bit more relaxed.

To be continued………………….

#ChronicPainSucks: Part III

In July my condition became a lot worse and I was living with level 9-10 pain every day.  The pain scale goes from 1 to 10 with 10 being the worst pain.  I was having a hard time functioning.  The pain was so severe I felt crippled.  By August I felt I would be in a wheelchair soon if I didn’t figure out what was was wrong.  Notice I said “if I didn’t figure out what was wrong”.  Yes, I had to figure it out myself.

I  was do for a visit with my Psychiatrist (I’m not counting her as one of the 5 doctors’) so I went to see her.  With 20 years of being in a dark room with migraines you naturally get depressed and become severely vitamin D deficient.  After my implant I started going off the antidepressants and was down to a small dose of Cymbalta.   At one point I was on 7 different medications.  It becomes so difficult to manage that many medications and it’s dangerous because it’s easy to make mistakes.  Just ask my husband~ And ask my friend Colleen how fun it is when Kim forgets to bring her medications on vacation.

Because I was so frustrated, mad and upset that no doctor was helping me, she said I needed a mood stabilizer.  WTF?  So this is how it always works….throw drugs at a problem.  Our medical system in the U.S. is ruled by the drug companies.  Pharmaceutical companies care only about the money and not helping patients get better.  Doctors just want to treat symptoms instead of figuring out what is wrong.  In fact, they treat side effects of a medication with another medication.  Have you seen the commercials for a medication to take to help opioid induced constipation?    So instead of adding fiber to your diet they recommend a drug.   I refused to accept another drug from the psychiatrist.  And, I am no longer seeing a psychiatrist.  I didn’t need a mood stabilizer.  I needed answers!

Back to my PCP at the Palo Alto Medical Foundation

My PCP has been amazing.  She listens to me and has helped me through many years of migraines.    She suggested I move on to the Stanford Pain Center.  Since I have been a patient with them in the past and didn’t really have a good experience I decided to find someone outside of Stanford.  My back up plan was to go to Stanford.  I googled pain doctors in my area and thankfully I found Remedy Medical Group.  And lucky for me they have an office in Redwood City.

To be Continued……

#ChronicPainSucks: PART II

So I now have been told I have Fibromyalgia.  For all of you that have been told you have Fibromyalgia please make sure you have been tested for EVERYTHING before you accept Fibromyalgia as a diagnosis.  You need to rule out everything.

I then went to an MD specializing in [3] Physical Medicine and Rehabilitation that the Rheumatologist referred me to.  He said I DID NOT have Fibromyalgia and asked who told me I have Fibromyalgia.  He said I have an [2] L5 pinched nerve.  He determined this before doing  a physical exam.  However, an L5 pinched nerve didn’t explain the burning pain in my arms.  So I questioned it.  He said  “easy peasy”.  You have [3] Repetitive Stress Injury in your arms.  He also told me I was weaker than his 90 year old patients.  He was SO wrong!  His solution was physical therapy twice a week for six weeks.

Since I was finishing up on physical therapy for my knee I went to the physical therapist with the new prescription and asked him to evaluate me.  He definitely didn’t agree with the repetitive stress injury diagnosis and said maybe I had a pinched nerve but it didn’t seem like it.  I agreed and then went back to my PCP to talk to her.

You have to be your own advocate.  No one else will do it for you.

#ChronicPainSucks: PART I

#ChronicPainSucks: PART I

After my neuro-stimulator implant in 2013 I thought I would be living life without chronic pain.  Nope!  Wrong!   Yes, my migraine pain is now managed using my stimulator but now I have burning and aching pain all over my body.  So my journey with the medical community continues and it’s REALLY frustrating, overwhelming, exhausting, annoying, depressing, discouraging, confusing and full of unwanted side effects. 

I’ve been to 6 MD’s:  YES, SIX!

AND 5 possible diagnosis’s: YES, FIVE!

First I went to my [1] Primary Care Physician (PCP) who started with a variety of blood tests that were negative so I was referred to a [2] Rheumatologist.  In April 2015, the Rheumatologist ran more blood tests and had me start Lyrica for the pain with the assumption that I had Fibromyalgia.  Well Lyrica didn’t agree with me so I had to stop taking it.  A few days later the rheumatologist emailed me and stated that all the blood tests came back negative.

Ok, great!  Now what?

So I went back to the Rheumatologist in May and was told I have Fibromyalgia.  If you are familiar with Fibromyalgia you know that it is a “catch all” medical condition.  There isn’t a test for Fibromyalgia so if you have any unexplained pain then you must have it.  WOW!

The Rheumatologist was not supportive at all.  She was ready for maternity leave and just wanted to pass me off to someone else.  After the second visit I ran out of pain meds.  I called her office and emailed them that I needed more pain meds on a Thursday.  Finally they called and said they would refill it for me.  While I was on the phone with them, they confirmed my pharmacy and said they sent it in.  THEY DIDN’T!  Unbelievable!!  Of course, that was Friday by then and they were gone at 5pm so I had to wait until Monday to get more pain medication.  I was so PISSED that I sent them a nasty email back.

They have no idea what it’s like to have level 8, 9 and 10 burning and aching pain all over your body.  They probably think I just want drugs.

To be Continued…….

Punchy Jewelry slowing coming back

Sorry, Punchy Jewelry Fans but I’ve had severe crippling pain in my arms, hands, legs and feet and have not been able to make anything.

Hopefully soon!

Nash likes mommy happier!

Photo on 4-24-15 at 5.51 PM

Chronic Pain Assessment

A tool that may help.

http://www.webmd.com/pain-management/chronic-pain-assessment/default.htm

Chronic Pain and Depression

When my migraines first started in 1995 I began experiencing depression.  I never felt depressed before that.  I had no idea at the time that most people with chronic pain have depression.  I went to my primary care doctor and got Fioricet for the pain and Prozac for the depression.

I remember the first time I took Fioricet. I had no idea it had caffeine in it.  It was such a nightmare!  It didn’t help my level 10 exploding head pain AND I was wide awake.  I didn’t even think of going to the emergency room.  I just remember crying.  [What is Fioricet?  Per drugs.com:  Fioricet contains a combination of acetaminophen, butalbital, and caffeine. Acetaminophen is a pain reliever and fever reducer. Butalbital is in a group of drugs called barbiturates. It relaxes muscle contractions involved in a tension headache. Caffeine is a central nervous system stimulant. It relaxes muscle contractions in blood vessels to improve blood flow.]

I remember Prozac too: [Per drugwatch.com:  Patients taking Prozac may experience a host of side effects, including sexual dysfunction, dry mouth, nausea, headache, diarrhea, nervousness, restlessness, agitation, increased sweating, weight gain, insomnia and drowsiness.]  Strange how so many drugs have headaches as side effects.  I only took it for a few months and then switched to Zoloft.  [Per drugwatch.com:  Minor side effects of Zoloft that typically decrease after the first or second week of use include:, Nause, Diarrhea, Weight loss or gain, Increased sweating, Dizziness, Sleepiness or insomnia, Tremor, Dry mouth, Headache, Restlessness, Suicidal Thoughts, Sexual Dysfunction.  I didn’t stay on Zoloft very long either.

So if you are feeling depressed from all the head pain or just in general.  YOU ARE NOT ALONE

Check out NAMI, National Alliance on Mental Illiness.  

http://www.nami.org/Learn-More/Mental-Health-Conditions/Depression/Overview