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Author Topic: PFR-Knee pain-Who has had this?  (Read 166207 times)

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Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #630 on: February 23, 2019, 11:08:48 PM »
Hello everybody,
I started a running blog.  If you would like to follow me this is my link:

https://takingit1stepatatime.wordpress.com


This past year, and especially since December, has been trying.  I have been on 19 different medications, 4 diets, tried Several other options (homeopathic).  Nothing worked.  I have Crohn's with horrific IBD (no more details), Barrett's esophagus with insane acid reflux (I sleep sitting up.  Now the acid is hitting my vocal cords even though I am not lying down.  I keep loosing my voice.). On top of this I have a mass in one area in my chest (not cancer... enlarged lymph nodes).  This has been acting up recently.  Not fun.
So today with everything going on internally I went out for a run.  To my surprise I got in 8 miles.  Still not feeling good, but better than before.
Take care and talk with you soon,
Mr. F

Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #631 on: November 19, 2019, 02:48:21 AM »
Hello everybody,
Sorry I have not posted in forever.  I have been running and walking a lot.  I did my first 50 mile race and a month later my first 100k.  I have been looking for my first 100 mile race.
Along with this I got into training and coaching other runners.
What I did not know is that I have been running and walking with Barrett's esophagus and Crohn's disease.  So it looks like most of my knee issues were from my Crohn's disease.  Who would have known.
Currently I am on a break from running, walking, and exercising.  Doctors ordered me to stop until I get my Crohn's under control.  More issues than I would like to talk about.
I hope you are doing well.

Take care,
Mr.F

Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #632 on: December 17, 2019, 12:07:24 PM »
Hello everybody,
It's been about a month and I am still on injured reserved.  No running not walking.  I am on a new medication.  It has lessened the abdominal, intestinal, pain.  I am still dealing with horrific acid reflux.
I started recovery yoga.  I enjoy it.  I need to find a center or studio near where I live. 
It is amazing to hear people, doctors, family and friends say "your identity is tied to your running." Basically saying without running I have nothing.  Running is a part of my life.  When I started running I prepared myself to have it taken from me.  Just like martial arts, basketball, soccer, and baseball.
You see with a genetic disease (what I thought were knee issues, which ended up an autoimmune disease) everytime you start becoming physically active it is taken from you.  You learn you are more than the activity.  You adapt and change what you do.  It's a part of you, not your identity.
If I have to give up running I have already come to terms with this.  If all I can do is walk.  O have come to terms with this.  If I can never race again I have crossed over 140 finish lines (from 5k to 100k), finished every race I started, placed in my age group, and placed in my division in every race that recognized my division. 
I have over 5 years of incredible, amazing, and life changing experiences that can not be taken from me.
At 13 I started to experience medical issues.  At 14 I was told I would never run in my lifetime.  At 15 I had my first of 8 operations.  At 35 both knees were replaced.  At 41 one knee revised.  At 43 the other knee revised.  I started my running and walking journey at 44.  I love every second.  I would not change a thing.
This sport has brought me closer to my wife and kid.  The quality time, conversations, runcations, run dates, and experiences with family has been amazing.
The friends I made, and make, the connection with different running communities, the new family I have, and the support has (and have) been life changing.
The ambassador programs that took me on and support me is phenomenal.  I am part of multiple groups.  Recently I was accepted into the inaugural Chronically Badass AmBADASSor group (about 15 athletes).  All of us have genetic limitations, but we keep participating in mainstream sports.  It is an honor to be part of this group.
As you read this you might think that I am giving up.  No, the exact opposite is true.  In 2020 I have 2 goals for myself.  1)Run, walk, crawl, etc. the Jack Bristol 100k (I have completed the 50k and 50 mile races).  2)Walk/Run my first 100 mile race (looking into several multiday races.  This way I can walk and take needed breaks.
Along with this I want to continue training new runners and helping other athletes obtain their running goals.
I have no idea what my running future holds.  It is part of my life, and part of me.  It is not my identity.
Hopefully you can get out and crush some miles for me.  Remember do work- get results.
Take care,
Mr. F

Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #633 on: December 29, 2019, 12:50:29 AM »
Hello everybody,
I hope you had, have, a happy holiday (s).  We had a relaxing holidays.  No traveling, no extended family, and our teen spent Christmas with their girlfriend.  Our teen just celebrated their birthday (girlfriend is spending time with us).
As for me I am starting to feel better.  The low dose Narcan is working.  I am still on the bland, no seasoning, no sugar and low fiber diet (no caffeine, soda, carbonated beverages, alcohol, coffee, or dairy).  I am starting to gain some weight and remain hydrated.
Last week I saw one of my doctors and was given the ok to walk a mile on New Year's day.  I am thrilled to be able to do this.
On a different note I was reading about everyone's accomplishments in 2019.  So I started looking at my milage.  Since I changed watches in May I had to work off of two different running apps.  From January through early May I ran and walked over 1,117 miles.  From Mid May until the end of October (that is when I stopped walking and running) I walked and ran over 977 miles.  As of October 31 I walked and ran 2095 miles.  If you add the miles from work and daily life, I will be close to 2225 miles.  This is more miles than I thought I would have.
Other than this I have been using my time off to relax and recover.  I hope you are having a relaxing weekend.  Go out and crush those miles.
Take care,
Mr. F

Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #634 on: January 25, 2020, 10:45:35 AM »
Hello everybody,
100...to you it's just a number.  To me it's 14x7+2.  I know it still means nothing to you.  To me it's hitting tripple digits.  To you it's nothing.  To me it's getting my life back. 
In mid October internally everything went to hell.  You would never know this.  You could not see, nor feel, what I was going through. Crohn's and Barrett's was at war and the battle fields were my GI tract and stomach.  It felt like I was digesting my own stomach.  Also I felt like I needed to rip open my abdominal area to elivate the pain and bloating.  I could not sleep, waking up to horrific acid reflux.  I went through 20 some odd medications (over a 2 year period) that only left me with unthinkable side effects.  I tried 5 different diets, with no success.  I was loosing weight and feeling worse.
I almost gave in.  I almost gave up.  I found a light.  Working with my chiropractor and a natural path I found my path to recovery.  With a combination of bimonthly chiropractic visits and low dose Narcan I am on the road to recovery.  I have gained weight and the war in my GI tract and stomach is almost gone.
Now I have to continue with my plan and let my body recovery.  On Saturday it makes 100 days since my last run.  To you this is no big deal.  To me it's a hundred days of sacrifice.  It's the price I am willing to happily pay to be able to run again. 
So next time you complain about having to run or going out for a run, there are those who have autoimmune diseases who would give up anything (like 100 days) to be able to do what you are complaining about.
Looking forward to seeing you on the roads are trails.
My knees are feeling ok.  Nothing new.
Take care,
Mr. F

Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #635 on: March 25, 2020, 02:10:03 AM »
Hello everybody,
So I have been dealing with Crohn's disease and Barrett's esophagus issues for years (more like over 3 decades...when I think back about my life).  Over the past 2 years, and more specifically since February 2019 my condition got much worse.  I did not know the warning signs.  In October 2019 I had to give up all forms of exercising.  No walking was the worse.
I started to see a natural path.  I got on a Crohn's friendly diet and was given LDN (low dose Narcan).  It is a life saver.  (Since there are way too many forms, and causes, of Crohn's doctors are not sure why LDN works for some people and not for others). l am one of the lucky ones.
Because of my internal battles I took a 5 month hiatus from running and walking.  Today was my first time running 10 miles in over 5 months.
Throughout this journey I am remaining positive, researching about my medical conditions, and learning.  I finally discovered why I needed knee surgeries.  I did not know Crohn's disease can cause arthritis in bones.  The number one joint it attacks are knees.  So when my orthopedic told me my knees were caused by genetics, and most likely from my mother's side of the family, he was correct.  He just did not know how I ended up like that.
My mother has Celiac's (she found out this past year).
This explains so much.  Learning about Crohn's explains a lot about my life.
So now that I know the warning signs I can plan my walks and runs better.  I now when things are good or going downhill fast.
With my health improving I am not playing tour de port-a-potty everytime I run.  It is amazing to run 10 miles and not having to stop 4-8 times.
On a positive note since I was sidelined I did not sign up for races.  So I am not facing either differ to next year (and pay more money) or donate your entry fees to the race.
I did sign up for 1 race in 2020.  It's a free race.  And it's a 100 mile ultra (in July).  If it gets cancelled I will hopefully run it in 2021.
I was going to take a leave during this year (at work).  Well the virus took care of that.  I do not need to use a sick day (I am a teacher).  We are going to virtual learning.  Training starts soon.  This will be interesting.
I hope all is well with you. 
Take care,
Mr. F

Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #636 on: July 15, 2020, 02:28:54 PM »
Hello everybody,
Sorry I have not posted in a long time.  I have been dealing with Crohns disease along with other autoimmune conditions/diseases.  Also COVID19 has been a major concern of mine (and my family).
This month is my birthday month.  I have myself an early birthday gift. 
June 13-14 I ran (well ran and walked) my first 100 mile ultra (yes this is correct).  I had 19 friends run with me (throughout the race).  It took me 27 hours 38 minutes and 30 seconds (I had a time limit of 30 hours).
Currently I am dealing with a new autoimmune condition.  I believe I have Raynaud's phenomenon (if so this will be autoimmune disease/condition number 4).
My wife and I fixed out patio.  We removed the bricks, replaced them with other bricks (from our home owner's association), leveled the ground, put down the bricks, filled in sand and rocks, tamped down the bricks, replaced the boarder, planted grass and cleaned up the plants around the patio.  This set off GI tract  issues.  So it's off to see many doctors.
Major issues are hands and feet ice cold and discolored.  Knees are ice cold also

So for about 2 weeks I have not gone for a walk nor run and no other physical activities.  This is not fun.
Hopefully in the next few weeks I will have more answers (currently more questions than answers). Hopefully you are feeling better than I am.  Get out and walk, hike, run, bike, swim or do some physical activity for me.
I started a movement on Facebook.  Use #RunWithAdam, post pictures, and share your activities to motivate and inspire me (and others).
Take care and #CrushThoseMiles,
Mr. F

Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #637 on: December 27, 2020, 02:34:22 PM »
Hello everybody,
Well it's been the year of medical hell.  From January through March I was sidelined by medical conditions.  78 total miles walking and very limited running.
In April I was given the clearance to start distance running again.  I was mainly walking.  When I ran I used low intervals (30 second run-30 second walk).  I was feeling much better.  I was able to accomplish my 2019 goal (before everything went to hell in September 2019) of running (with lots of walking) a 100 mile ultra.
After the race I felt great for about 2 weeks.  We re-did the patio.  At this point I did not realize I had Raynaud's phenomenon.  All the shaking and vibrating that was involved set this autoimmune disease off.  I was freezing cold in 90 plus degree weather.  Fingers and toes changing colors.  (Yes I did go to a Rheumatologist.  He looked at my hands and feet and said "You have Raynauds.") Along with this I have arthritis (another autoimmune disease).
I have experienced a huge flare-up from Crohn's.  Since early July I have struggled to walk (and occasionally run) 25-40 miles per month.
In October I was back in the emergency room (International bleeding... really bad).  The hospital has a new section for people under observation.  You stay in this section for up to 24 hours.  Well I set the record for time spent there.  3 days...Yes I was known all over the hospital.  The person who spent 3 days in observation.
Since then everything has been off.  I shake all the time, the room spins, dizzy, loss of balance, nausea, light headedness, mental fog, abdominal pain, back pain, muscle pain (all over), bone pain (all over), fatigue, lack of sleep, vertigo, headaches, blurred vision, etc.
It is like my entire body is fighting against itself. 
I have many doctor appointments scheduled and trying to schedule more.
Sorry for not posting in awhile.  Now you know.
Hopefully you are feeling better than myself.  Please do not take this as complaining.  (When reading a text, email, post, etc. it is easy to change the tone and read what you would like into it).  I would like some answers to figure out what is going on.  I am grateful to be alive, part of my family and be somewhat active.
On a positive note our kid got their SAT results in November...1410.  (Their goal was a 1400).  So we celebrated this accomplishment.  In December we celebrated their birthday.
Now that 2020 is coming to an end I am starting to think about my goals in 2021.  There are 2 that come to mind: inspire and motivate others to be active and to help others reach their goals.
Happy holidays and have a happy new year...Take care,
Mr. F

Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #638 on: March 07, 2021, 03:07:37 AM »
Hello everybody,
Well 2021 started off with a 10k walk.  I had no races planned.  I was hoping to pick up some new product ambassadorships.  Specifically a watch and headphone company.  I got neither.  Such is life.  I did pick up a new ambassadorship.  It is with the RunShowUSA.  Its the first of its kind convention in the USA.  It is going to take place in Boston Mass January 29-30,2022.  I am looking forward to this. 
During January I was experiencing new abdominal pain.  New lab work, new doctors, and new meds (nothing was helpful...lab work was clean, doctors found nothing, and the side effects of the meds were not fun).  I did find out that my vertigo is caused by Raynaud's phenomenon.  One part of my body that gets cold are my ears.  With this, my eardrums freeze.  This is causing my balance to be thrown off.
February was not much netter medically.  I did get out and walk 4 times.  This was a nice surprise.  I had 3 better days.  New test and new meds in February got the same results as January.  I did get some good news.  Companies are reaching out to me to do some promotional work.  Sugar Free Soxs sent me 3 pairs of compression socks (initially it was going to be 1)but they changed their minds.  I love compression socks (a good pair helps with blood flow and Raynaud's ).  Sugar Free socks were great and I created several promotional videos and posts on social media.
Also I was contacted from a new shoe company.  They have a unique concept and new ideas for running shoes.  I was interviewed by Hann Shoes.  They are creating a carbon fiber shoe that takes pressure off of knees and ankles.  I got in on their Kickstarter campaign.  $300 shoes for $99.
On top of all of this on the 13th it will make 1 year working at home, being by myself, and extremely limited contacts with others (ex-shopping, gas, stores, etc.)
The best news is last.  My kid is a senior in high school.  They had the highest SAT score in their school.  My kid has been invited to apply to colleges and universities.  So far my kid has been accepted to 1 college and 2 universities with academic scholarship offerings.  So we have been celebrating this in our house.  How do geeky people celebrate?  By buying books (yes political, psychological and philosophical theories and analysis).  In other words light reading for our kid.
Through all of this I have experienced limited issues with my knees.  This is a good sign. 
Take care and go out and be active,
Mr. F
PS-if you want to join in on my running, being active movement, use #RunWithAdam when you are posting on social media.  I am showing others what a disabled athlete can accomplish.

Offline Mr.F

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Re: PFR-Knee pain-Who has had this?
« Reply #639 on: July 15, 2022, 12:26:07 PM »
Hello everybody,
Well I am back to the living.  So much has been going on with me medically.  I hit the bottom and thought I was not going to be able to run nor walk again.  Needless to say I was not in a good place.
Over the last few, many years, I have been dealing with several medical conditions that I knew about.  I did not realize how bad everything had gotten.  You know about the knees and my decades long journey and suffering.  Well that was the outlier of what was really going on.  You see on top of the osteoarthritis I was dealing with Crohn's disease and IBS.  Not a fun combination.  (My GI doctor thinks that my knee issues are a result of Crohn's).   And as I was going to find out you rarely get one autoimmune disease.
Several summers ago I was diagnosed with Raynaud's phenomenon.  It was in the 90s (hot summer day) when I went to my doctor.  I had on flip-flops.  I was in an examining room.  The doctor walks in, takes one look at my blue and purple toes and says you have Raynaud's.  He looks at my discolored fingers and says yes its in your hands too.  Raynaud's impacts my toes (feet), fingers (hands), knees, nose, and ears.  And on really bad days it causes vertigo (not fun).
If this was it I would say its bad enough, but there is more.  During the past 2 plus years I have been dealing with finger and wrist pain.  I thought it was related to Raynaud's.  Was I wrong.  I sought out a new Rheumatologist because the first one I saw said I do not have any other autoimmune diseases without running any tests.  I was shaking, chest pain, difficulty breathing, could not run nor walk, and other medical issues.  (My family has a history of fibromyalgia, and I thought I might have this).  So I finally got an appointment with a Rheumatologist who looks for what is really going on and not just a label.
My first appointment there was a family history and medical profile taken, request for labs (lots of blood work, imagining, x-rays, urine sample, poop sample, etc).  I had my hands, hips, and legs scanned (bone density scan).  I had to get blood work done from a local place.  13 tubes.  They also did the other labs.  I needed x-rays from an imagining center.  Once everything came in I had to schedule another appointment.
Well I did not have Fibro.  I do have 3 different forms of arthritis in my body (all autoimmune related), bone density loss in my hips (high risk for fracture), and precursors for 2 other diseases (which are not fun, and the friends they bring along are...well lets say life altering).  So I am in PT for psoriatic arthritis.  Not a fun autoimmune disease to have.  Yes, I am on meds for this.  It has taken so time, but I think we have a good dosage.
Now having all of this would be horrific, but I am not done.  Several years ago (through a swallow study) I was diagnosed with a hiatal hernia (sliding).  I went to a motility specialist for about 2 years.  I was but on all different types of meds (prescription and over the counter), exercises, diets and nothing helped.  Finally I was to undergo a procedure to get some real answers.  In the middle of this my doctor stops everything.  When I wake up he tells me I need to have surgery to repair my hernia.
Years ago my GI doctor sent me to a specialist who deals with stomach and esophageal issues.  He did not have any diagnoses to work with so we talked and came up with we should not perform a random operation that could make matters worse.  So I make the appointment with my diagnose of a hernia and surgery. 
I am thinking once this is done possibly some relief.  Well, not so fast.  The doctor looks at my imagines, doctor notes, and medical history.  He asks me some questions.  And says no surgery.  You are experiencing some issues with swallowing (everyone who has a bad hernia has issues swallowing), so I am not going to operate.  Wait? 
So my wife and I are looking for a second opinion.  We both go on-line and find the same practice and doctor.  I make an appointment.  Like any other office  you have to wait 1-2 months (under staffed and overworked).  I bring in my medical notes, doctors, medications, and some other information that I feel will be helpful for a new doctor.  I was in the waiting room going through the standard background (height, weight, symptoms, medications, etc).  The person walks out and we wait 5-10 minutes.  Another person walks in and says the doctor will see you now.
Confused, I am thinking why would someone say this and not have the doctor come to the room?  We were escorted down the hall.  (This is not a good sign, when you are taken to a regular office with no examining equipment).  In the room is the doctor, myself and my wife.  We talk a little while about my medical conditions and medications.  To make a long story short...he refuses to operate because one of my medications would make surgery impossible.  He said...it would be like trying to put wet paper back together.  In other words I my insides would fall apart during surgery or during recovery.  Not a good liar. 
I almost forgot.  With the hernia I am experiencing horrific acid reflux.  It is so bad that its side effect is vertigo. If this is where my saga ends this would be bad enough, but it continues.
So here I am with everything going on and my body still rebelling.  I am trying new meds, diets, exercises, breathing techniques and nothing is working.  I am in constant pain.  I am not eating nor sleeping.  I am withering away as life is passing me by.
At one of my chiropractic visits my doctor says how open are you to new experiences.  Why?  I have a fantastic doctor and he is the best at diagnosing impossible cases.  (I am suffering from a 5 year, plus, unknown abdominal pain that is impacting my back).  So I get the name and number for another doctor.
I get home and make the call.  Next available appointment for a new client is November 2022.  I make my appointment and ask to be placed on a waiting list.  A couple of weeks later I get my appointment.
The paperwork is amazing.  Complete medical history (and family medical history), questionnaire, and pages of useful information.  Of course I bring in my information and all lab work from this year. 
The doctor is impressed that I thought to bring in all my lab work.  This helps see the bigger picture.  We discuss the real reason I am here (undiagnosed abdominal pain).  Doctor informs me that if I want drugs or something to get me by, well this is not the practice for you.  If you want supplements pushed on you, this is not the practice for you.  If you want a diagnosis and help feeling better this is the practice for you.  Of course I want a diagnosis. 
Doctor says we will get to your abdominal pain.  I need to know more about you.  40-45 minutes of discussion, medical concerns, histories, life, diet, meds, lab work, questions, surgeries and medical procedures.  Finally the doctor asks to examine me.  Doc says I have an idea of what is causing the pain.
He comes over and asks me to lift my shirt half way up (examine my abdomen).  Doc asks to point out where the pain is coming from.  Doc starts to feel around my left side (abdomen) and under the rib cage.  It is painful.  Doc asks me to lean forward.  Wants to see something.  Doc uses 1 finger and touches my lower back.  It is painful.  Doc says I have to do this one more time and the pain is going to be worse.  I brace myself as we do this.  One finger and the pressure is bad, I start cursing.  Wow I can feel the pain.
Doc says, this is where your pain is...correct.  Yes... Well you have a displaced rib.
WTF??? why would no other doctor notice this?  The reason why...this would not show up on imagining.  Also the rib is creating pressure (pulling on) my diaphragm, lung, stomach and esophagus.  How to stop the pain, move everything back.  Only problem is the muscles are like cement.  Its going to be difficult and painful.
A week later I was back to get my rib moved.  I started my deep breathing and placed my mind somewhere else.  My doctor worked the muscles and rib for about 1 hour.  I had no idea how long this lasted until I looked at my watch.  The rib was back in place.  Breathing was immediately easier.  I could eat and digest food.  My acid reflux, GERD, was gone. 
A week later I was back.  The rib is holding in place.  Now we get my insides adjusted and back into place.  I am feeling like a new person.  I was given the green light to walk and placed on a special diet.
As for the walking.  I am out 3-5 times a week.  Walking anywhere from 4 to 20 miles at a time (doctor approved).  The diet worked.  I am introducing new foods and seeing how my body reacts. 
I am sleeping through the night, more active, working on my nutrition and hydration (not fully functioning but way better than before), and now I can start adding in some core work.  My stomach did try to move back to where it was.  Doc adjusted me on my last visit.
Everything from his end is looking good.  My five year, plus, abdominal pain is gone.  Back pain associated with it, gone. 
So now its managing all my autoimmune diseases and keeping them in check.  I also forgot, I was given the OK to start jogging 0.25 miles for every mile I walk.
Great to be back to the world of the living....
Take care,
Mr.F