The FQ Condensed version of the late Karen P’s Journal.

What follows are the most relevant entries (of 9,437) to Fluoroquinolone from my

late wife’s Journal. Her Journal is now required reading at Duke School of Medicine.

On August 7th 2013 Karen could take the pain of systemic chronic tendonitis and her other health conditions no longer and took her own life. This must not happen to anyone ever again!

Friday Oct 22, 2010 10:21 pm

I will give the condensed version here. I am sure I will forget something.

[As far as I know Karen wrote this message to herself in 2010, not sure why she did it then. I found it after her death.]

A minor car accident in October of 1989 started daily chronic neck pain and headaches. I did not have pain prior to that but I believe my underlying issue started when I was a teenager with scoliosis.

Systemic Tendinitis starts

In 2003, I accidentally cut my left leg down to the bone just below my knee. [A dish broke. Never throw broken glass into a garbage bag, put it in a box! Bag brushed her leg when she was taking it out. I have added her medical records for this event in the hopes they help someone: Karen’s medical records from 2003 when she was given Levaquin® and got ‘floxed’ .]

I immediately went to the ER. After I finished the antibiotics I received at the ER, my leg became infected. My PCP gave me another prescription for antibiotics. The infection improved, but after I finished those antibiotics my leg felt infected but looked fine. My PCP gave me a lecture that I did not need more antibiotics as that would contribute resistance. A few days after this conversation with my PCP, my leg became an angry red, and was dead weight. The pain was HORRID! I went to the ER and was diagnosed with cellulitis. Several weeks of antibiotics cleared up the infection.

Six months after I thought the infection cleared, my left wrist started to hurt. My PCP diagnosed tendonitis.

and prescribed physical therapy. During therapy my right wrist started to hurt, which was weird because the PT was not working on that wrist. Then the pain traveled up to both elbows, and shoulders then both knees start to hurt. At this point I saw a rheumatologist. He diagnosed me with Rheumatoid Arthritis. This rheumy got the RA somewhat controlled. Three years ago, I developed tendonitis in both feet. My pain was a twenty on a scale of 1 to 10. I tried working with my Rheumy for about 18 months with this. He was a being a jerk so I switched rheumatologists last year. I have to drive almost two hours one way to the new Rheumy, but its worth it. The new rheumy changed some of my meds (not pain medication) and got this multi-year RA flare controlled which stopped a lot of the pain. The tendons in my feet are permanently damaged from being inflamed for that long. I can walk, just not very far. The new Rheumy diagnosed me with a variant of RA that attacks tendons [Caused by the drugs above]. My RA does not attack my joints.

This past June [2010] a tendon in my left index finger spontaneously dislocated. My rheumy prescribed hand therapy and a splint. During hand therapy both knees became painful and inflamed. I developed the general overall sickish feeling I have during a flare. I saw my Rheumy again. I received three kenalog injections. Kenalog stopped the underlying flare. Bilateral knee tendonitis established itself prior to the kenalog injections. This is nearly healed now. If not for my new rheumy, that tendonitis would have become chronic and spread to additional areas. The old rheumy would not have done anything to help me because my blood work numbers were normal. Whereas, the new rheumy assured me that they treat patients as people, not as the numbers on you blood work.

… Those of you that had tendonitis know how bad that pain is, and that you MUST rest your tendons or they will not heal properly. Tendons take forever to heal because they do not have a good blood supply. I have to take care of all my daily activities and this takes me all day whether or not my tendons are inflamed.

I have no friends. I wish there was a local chronic pain support group were I could physically talk with others in chronic pain. …

Wednesday, March 2, 2011 at 9:44pm EST

If you would not mind, can you tell me how you were diagnosed with lupus?

What symptoms did you have when diagnosed? How long from your first symptom until diagnosis?

What symptoms do you currently have? And how you manage the symptoms? Sorry for these questions.

After a major antibiotic resistant infection in 2003, I developed flares where my body systemically attacks my tendons. One of the medications I WAS on for my diagnosis of Rheumatoid Arthritis is Remicade.

In hind site one of the known side effects is elevated dsDNA. Well, I began getting weird symptoms on the medication, and the local rheumatologist increased the medication with no blood test. I continued to get worse.

About a year after this, I switched rheumatologists and had my dsDNA checked. Elevated, along with some other values consistent for lupus. I have been off Remicade for three years now.

My values have came back into the normal range, and so far have stayed there.. I have no more weird symptoms.

My tendons still become regularly inflamed. This inflammation was the reason for starting Remicade in the first place. I have neck and back pain from a congenital reason unrelated to the rest of this post for most of my life.

Random Chronic Pain Thoughts

March 2nd, 2011 at 10:36am

I am the author of the following:

Regardless of the cause of chronic pain, certain themes emerge. Chronic pain affects the physical, mental, emotional, and spiritual aspects of ones life. Chronic unrelieved pain causes impaired activities of daily living, changes in mood, decreased involvement in social activities, impairs function, leads to depression, anxiety, causes feelings of hopelessness and despair, and can result in suicidal behavior.

You learn who are your true friends. Many people are supportive in the beginning. As time goes on, most of those people reject you. Only true friends last.

Chronic unrelieved pain steals your future, your ability to hold a job, and your health insurance (if tied to your job.)

People that have not experienced severe unrelenting pain for months or years expect you to suck it up and continue your normal daily activities.

Chronic pain makes you feel alone. Like no one understands how much pain you are in.

Karen Paddock

[Sadly prophetic about suicide. –Hubby ]

Can’t walk due to Tendinitis

Saturday, June 11, 2011 at 9:54pm EDT

I developed another tendonitis in my ankle, so I will be dealing with this most of the summer. I get tendonitis in multiple sites.

[KAREN SPENT A YEAR CRAWLING AROUND THE HOUSE ON A SKATE BOARD LIKE THING MEANT FOR MOVING FURNITURE, WITH CARPET LAYER KNEE PADS, SO HER ANKLES WOULD HEAL, SO THAT SHE COULD WALK AGAIN, BECAUSE OF Levaquin!]

Friday, June 17, 2011 at 9:09am EDT

I wish there was a machine they could hook us up to, that showed the amount of pain we have. Then maybe pain would be adequately treated!!!!!! [Why can’t we figure out how to do this? For example there is no objective test that will show that you are hungry.]

Sunday, February 19, 2012 at 10:08pm EST

I felt myself beginning a flare of multiple site tendonitis again. I went to the doctor, he was going to prescribe more PT. I told him that I had 8 scripts since June 2010, and many more before that. I still do those exercises most days. He gave me a prescription for a muscle relaxer, Baclofen which as stopped the flare. I do not feel like I am developing tendonitis all because of that medication. My neck pain and headache, which are a different kind of pain are still there. Baclofen did not change that.

Sunday, February 19, 2012 at 10:12pm EST

[Hand held] Ultrasound does help. Relaxing the muscles helps, too. I have had tendonitis so much that I know what it feels like in the very early stage which is when I quickly got to the doctor and he gave me the muscle relaxer.

Thursday, April 19, 2012 at 6:49am EDT

I do not think that I will go to the Y today because I have irritated my foot from walking in the yard too much.

Thursday, May 17, 2012 at 6:58pm EDT

I am doing so so. I am off my RA meds, including prednisone, but I still take several other medications. Right now my ankles, especially my left one is hurting a lot. I think it would hurt just as much if I was on prednisone. I do not think prednisone makes a difference for me. Yes, I am going to the Y.

Thursday, May 17, 2012 at 7:03pm EDT

My depression is from the pain I feel, too. I think sometimes, that if we do not fit the typical symptoms that doctors learned about in medical school, that they blame our problems on us. Like they think it is all our fault.

Monday, June 11, 2012

Dr. [Local PCP. This is typical of the notes Karen took to the doctor appointments. Always take three copies. One for the nurse/records, one to put in the hands of the doctor directly and one for you as a reminder of what to ask the doctor.]

I am here today because every summer I have a flare up of tendon pain that can appear anywhere. Right now my left ankle and right elbow are flaring up. …

Tuesday, February 12, 2013 at 11:42am EST

Just walking around the mall for a little exercise is a stress reliever. [Karen rarely did this, even tho I often suggested we go do it.]

I hope that, Dr Gray patches just enough this time to control your HP without blowing more holes. You have been though so much with all the failed patches and surgery.

I never realized how bad HP can get until December when 3000mg of Diamox and 100mg of HCTZ did not control mine. I did not know that chronic leakers have a lot of shunt malfunctions. [Another ‘leaker’] talks about her shunt on the forum. Maybe shunts fail from over working?

I feel slightly better than I did yesterday. We’ll see if stopping Diamox is enough. I have not been up for very long today, either. Walking more than 15-20 minutes is painful for me because I had bilateral tendonitis in peroneal and posterior tibialis anterior tendons for a couple years. Over a period of four years, I had 19 physical therapy prescriptions for tendonitis in multiple locations throughout my body. I believe the anti-biotic Levaquin® is responsible for this. The PT diagnosed tendonitis every time. Tendonitis is not an overuse syndrome for me.

Tuesday, February 12, 2013 at 7:11pm EST

My head feels awful now when I am upright. It feels like a second half of the day headache. I had tendonitis in dozens of tendons. Most of the time, I had it in multiple sites and in multiple stages of healing, simultaneously.

Friday, March 29, 2013 at 5:40pm EDT

I have an appointment for April 2 to see Dr. Gray again.

Tendonitis is flaring up on top of my left foot. I know the names of the involved tendons, but can’t think of them off hand. The custom Richie Braces do nothing for tendonitis in this location.

Tuesday, February 12, 2013 at 11:42am EST

Just walking around the mall for a little exercise is a stress reliever. [Karen rarely did this, even tho I often suggested we go do it.]

I hope that, Dr Gray patches just enough this time to control your HP without blowing more holes. You have been though so much with all the failed patches and surgery.

I never realized how bad HP can get until December when 3000mg of Diamox and 100mg of HCTZ did not control mine. I did not know that chronic leakers have a lot of shunt malfunctions. [Another ‘leaker’] talks about her shunt on the forum. Maybe shunts fail from over working?

I feel slightly better than I did yesterday. We’ll see if stopping Diamox is enough. I have not been up for very long today, either. Walking more than 15-20 minutes is painful for me because I had bilateral tendonitis in peroneal and posterior tibialis anterior tendons for a couple years. Over a period of four years, I had 19 physical therapy prescriptions for tendonitis in multiple locations throughout my body. I believe the anti-biotic Levaquin® is responsible for this. The PT diagnosed tendonitis every time. Tendonitis is not an overuse syndrome for me.

Tuesday, February 12, 2013 at 7:11pm EST

My head feels awful now when I am upright. It feels like a second half of the day headache. I had tendonitis in dozens of tendons. Most of the time, I had it in multiple sites and in multiple stages of healing, simultaneously.

Friday, March 29, 2013 at 5:40pm EDT

I have an appointment for April 2 to see Dr. Gray again.

Tendonitis is flaring up on top of my left foot. I know the names of the involved tendons, but can’t think of them off hand. The custom Richie Braces do nothing for tendonitis in this location.

Wednesday, July 10, 2013 at 8:13pm EDT

I followed up with Dr. Schievinks office today about have a blood patch in Pittsburgh. … The folks in Pittsburgh tell me that I should be able to schedule a blood patch tomorrow. We’ll try this before flying back to L.A. All the coughing undid something. Many of the symptoms that I’ve told you about are back. I’m on another involuntary crash diet from extreme nausea. [She was down to 165 pounds when she died.] I tried a few prescription medications, activated charcoal, and ginger. None worked. The only thing that helps is lying down. ARG I do not like lying around. I want to move! Moving is good mentally. I think my history with systemic tendonitis issues could be related. Maybe I have an underlying undiagnosed connective tissue disorder that weakened my tendons and dura. [It has been my contenion that Levaquin® damaged her Dura and prevented any treatments from working, this gives some suppor to my conjecture: “Importance Fluoroquinolones have been associated with COLLAGEN DEGRADATION, raising safety concerns related to more serious collagen disorders with use of these antibiotics, including aortic aneurysm and dissection.” — “Risk of Aortic Dissection and Aortic Aneurysm in Patients Taking Oral Fluoroquinolone”; JAMA Intern Med. Published online October 05, 2015. doi:10.1001/jamainternmed.2015.5389 . I had Karen’s spine exsumed after her death to be studied. Does anyone know of any Genetic test that could prove the Dura / Fluoroquinolones connection?]

Wednesday, July 10, 2013 at 11:56pm EDT

I’d like to stay home but we will do whatever it takes. It is expensive. When symptoms become bad enough, I don’t have a choice but travel to the best doctors. We were in L.A. from 5/26 to 7/04 minus the 3 days we were home between flights. We spent most of April and the first part of May in North Carolina. After being a frequent flier (gotta add a little humor) in physical therapy with various tendonitis issues, I learned what worked best for self management. Tendonitis in the early stages has a pain that is distinct from all other pain. I had tendonitis in multiple sites in my upper and lower body. Tendonitis in my lower body is more devastating. I had bilateral peroneal, bilateral posterior and anterior tendonitis all at once. Since had to walk and could not give them adequate rest, they healed as tendonosis, a degenerative condition. I had custom ankle foot orthotics in my shoes to take the stress off those tendons. When my tendons flare, I’ll wear the braces indoors and outdoors. I don’t wear them full time any more than necessary, or my ankle muscles get weak and I lose range of motion. The braces are a catch 22. They have a hinge but have no side-to-side motion that wrecks havoc on my knees and hips. That’s the story behind the ankle/foot orthotics that you saw in my shoes.

Friday, July 12, 2013 at 6:58pm EDT

[Talking of insurance.] The decision makers need to spend a week in our shoes. I bet they would have empathy for us and change their decisions. … It’s easier to get disability through your employer, if you worked for one of those because they are not covered by the (E)mployee (R)etirement (I)ncome (S)ecurity (A)ct. Pretty much all other disability insurance through your employer is governed by that. ERISA is anti-clamiant and pro-insurance company. Nearly everyone is denied, and the ones that are initially granted are constantly harassed with paperwork!

Saturday, July 13, 2013 at 1:46pm EDT

I feel down most days. I spend all day every weekday by myself [Resume anyone? I so regret spending so much time at my day job – Bob :-(]. No one comes to visit, and I rarely get a phone call unless it is from my Mom. My life has been like this for years. …

[A ~thousand entries later:]

August 7th 2013; Karen’s last day:

I, Bob, pick up the narrative here.

Karen was undone by one of those #@)$*#$*#*$ stupid phone menus! Press 1 for … #)$*#)$)#*!!!

August 7 3:30pm

I am slaving over my computer at work, like usual. For no reason I fell a whole body electrical shock. Like I had just stuck my spine in a light socket. A voice in my head says “Someone died”. I looked at the clock on the computer. It said 3:30PM. I thought this was very odd, then thought no more of it.

I always called Karen when I got out of work at 4:30PM. She usually was prompt to answer. On occasion she’d be in the bathroom or outside getting the mail. Not answering the phone on the first call did not concern me. When she did not answer by my third attempt at 5PM. I called our next door neighbor, Paul, and told him to go check on Karen. I was still a half-hour away from home.

At first Paul did not take me that seriously. Paul said Karen had been laughing and joking with him early in the day as she often did. On the day she never hurt more in her life. She was *that good* at hiding pain. Many have said ‘if I only knew I would have helped her’. As you can see you had no way to know, so no reason for guilt, I have enough for all. {My perspective is rather unique from most people now. People in Chronic Pain smile on the outside and suffer on the inside. They should not do this. It hurts them and hurts bring attention to serious medical problems! Hidden problems do not get research dollars!- 2014}

That morning when I got ready to go to work she said her heart was racing. I asked her if she wanted me to stay home and she said no.

Paul rapidly became concerned when he got no answer. I told him how to get into the house, which he did. He went right to the bedroom, as we expected she was unconscious from some-kind of heart issue. She has had issues with low potassium levels causing heart issues. He said she was not in the bedroom, as we talked over my cell phone and his.

“She has to be in the house someplace? Look in the living room, up stairs, or basement.”

Sounds of Paul walking around into the living room.

“Oh God No! Bob. She is dead! SHE HUNG HERSELF WITH THE DOG LEASH!”

Paul burst into tears. Those words will forever echo in my mind! … [Now I hope yours as well until these antibiotics injure no more…]

Her complete Journal may be found here.