Surviving Chronic Pain


Every one has a different journey with pain. And everyone experiences pain differently.  Pain is subjective and I don’t believe you can say my pain is worse than someone else’s.  Because it’s subjective medical professionals usually us a scale of 1 to 10, with 10 being the worst. Some of you may be familiar with this scale.  

Pain scale

Because I have had chronic pain since 1995, I’m quite experienced with how the medical community treats people in pain.  Personally, I believe anyone that says they have pain but that isn’t always the case when you go to your doctor or the ER in pain.  In fact, if you take prescription opioids for pain most ER’s treat you like an addict.  I won’t get into that now but most people with chronic pain are not addicts #WEARENOTADDICTS.  Sadly, there is a war going on in the USA right now and people that need pain meds just to get out of bed are collateral damage in this war our government calls an opioid epidemic.   See my post here.


My journey with chronic pain and how I treat it now


My chronic pain journey started in 1995 when I was diagnosed with “tension” headaches.  I can understand this because I was a manager in a corporate tax department working long hours.   The pain was mostly in the back of my head but would sometimes be in the front on one side or another.  In January 1996 my mom was diagnosed with stage 4 lung cancer.  At that time I was even more stressed and starting to get some depression.  Six months later my my died and I had to manage her estate for 2 years.  During those 2 years my head pain and depression got a lot worse.  I quit my job October 1996 but it did not help relieve any symptoms.  

Little did I know at the time most of the headaches were really migraines.  I tried some medicine from my primary doctor but it never helped.  I remember the first time I took Fioricet.  I had no idea it had caffeine in it and so I took it at night.  It didn’t help at all and I just ended up crying in pain not being able to sleep.  I also remember the first time I went to the ER for a migraine.  I was crying so much I could not even talk to the triage nurse.  Shortly after a few other drugs I went to a neurologist.  He prescribed many things including Topomax ( which is referred to as dopamax because it make you dopey) and nothing helped.  So I finally decided to seek out a headache specialist.  I did have an MRI done but they said everything was fine.  That was the only time they tried to figure out the cause.  MADDENING!  So for two decades I went from place to place.  I spent 7 years with a UCSF horrible doctor to the SF Headache Center to a really creepy horrible doctor to Stanford when they opened the Headache Center in 2012.  

For two decades I tried every drug available to abort a migraine and every drug available to prevent one. You can read more of my story here and if you want to know things that can cause migraines go here.  

  • July 18, 2013 I had my implant put in which you can read about here
  • November 9, 2015 I was diagnosed with Lyme, Babesia and Bartonella.

 

2015 to August 2017: I was taking the prescription pain med Norco.  I was at 30mg a day and through treatment I was able to get down to 10 mg a day. I spent many years trying different types of cannabis and nothing helped with my pain or other symptoms.  I heard this has to do with my MTHFR gene but I’m sill learning about that.  All I know is cannabis doesn’t work for me at all.

January, 2017:  I can not even comprehend myself how much pain I am in.  I can’t even stick to the pain scale of 1 to 10 (10 being the worst) because this pain is so far away from a 10 that it’s even hard for me to understand how this is so bad and why this is happening.  I try to explain to people how bad it is and I can’t explain it clearly enough.  I feel like I am dying 7 days a week mostly 24/7.  I usually have about 10 hours in a 168 hour week that I feel a bit better.  I am never pain-free.  I learn to live with a tolerable level.  If I stick to the pain scale of 1 to 10 , I have been living at an 8, 9 and 10 for the past 2 weeks.  I am limited by the government and the doctors on how much pain meds I get per day.  I constantly wonder how any person can think that is ok.  I get so angry and frustrating at our medical community about how they feel this is ok or that they still think I make this up.  I then try and take a step back and relax and just focus on getting better.  If I had cancer I would have a medical community that would be understanding and sympathetic but I do not so I have to take control and my husband has to take over taking care of me.  Months ago I made my husband buy a chair for our shower.  That’s how bad it is.  I can not stand and take a shower which is something most people take for granted.  Last week, again, I mentioned how much worse the pain is to my LLMD and his response was “well you have to get rid of the infections in your body”.  So basically buy 12 more supplements and take them for 15 weeks and your infections will be better.  WTH?  So, it’s ok with him to suffer at a level 8, 9 and 10 while I take his list of CRAP!  No, that is not ok with me.  Yes, I am angry!  I have tried my best to follow his and other LLMD’s protocol and I am worse.  I now feel that someone is shooting electricity through my body.  How fun is that?  How is that ok?  So our government and most doctors think I either am an addict or I will become one so they will not give me more pain meds.  If I was an addict I would not be breaking my pain pills in half to ration them.  If I was an addict I would not be carefully monitoring how much I take per day and when I took them.  If I was an addict I would be visiting multiple doctors to try and get more medicine.  If I was an addict I would not have signed an agreement with my pain specialist that basically states that I (1) agree to urine testing, (2) I agree to only get my pain meds from him and (3) I agree that I will not take street drugs.  

Yes, of course, I am dependent on my pain medications.  There is a HUGE difference between addiction and dependence.  I am dependent on them to walk.  I am dependent on them to have a somewhat of a functioning life.  I do not get high from them.  Pain meds only reduce my unbearable pain to a tolerable level that most people can not comprehend.  No one would even consider taking away or limiting a diabetics insulin because they are dependent on it to live so stop trying to limit what I need to live.  Good article describing what I am saying. Thank you Suzanne Stewart, The Opioid Debacle

2017 was The Healing Year

Kratom:  The most amazing plant for me!

August 2017: I finally got tired of the monthly pain doctor visits, the contact I have to sign to get pain meds, the random drug test required as part of the contract and the monthly trips to the pharmacy. I started taking Kratom for pain.  I was told about it 2 years ago but at the time the only doctor I trusted was ok with cannabis but not Kratom.  He was my pain doctor but I’m not sure he did research it.  I did!

Kratom

It’s AMAZING!

Don’t believe the lies the government agencies are making about it because they want too make a synthetic of it to sell.  It’s all about money for them.  People on the decision making committees should not have ties to big pharmaceuticals but they do.  Big conflict of interest.

You can read about it a the American Katom Association

It helps so much better than my opioid prescription meds.  If you are interested in learning more I suggest you join some Facebook groups and research it for yourself and decide if its right for you.

I LOVE IT!