Is your pain not under control?
Six years ago, mine wasn't: Not even a little, and I very seriously wanted to die. Not because I was depressed - or even unhappy with my life - I was simply in pain, non-stop, around the clock, and I couldn't take it any more.
I want to share my tips for how I got my doctor(s) to take me seriously and to stop pushing absurd amounts of Tylenol, Advil, Aleve, Aspirin, rest, a better diet, weight loss (I wasn't even over weight), PT after more PT, and thier CONTINUOUS ignoring of my worsening 10/10 pain by throwing more and more referrals to specialist doctors (ortho, rheumatologist, neurologist, endocrinology, etc etc etc) who likewise, didn't know how to help me get control of my pain.
I hope you have a chance to read this if this applies to you, and I hope it changes your life like it changed mine because my pain is now a 3-5 MOST OF THE TIME.
I was diagnosed with EDS at thirty years old, immediately following a pregnancy. The hormones had triggered what HAD BEEN a lifetime of mild symptoms and I spiraled out of control thanks to misdiagnosis and the use of IV Levoquin & ciprofloxin over ten times in one year.
That first year, with a newborn, I was in and out of the hospital nonstop. First it was mono, then recurrent kidney infections, my pain was a worsening 10/10 around the clock and when my son was seven months old, I was suicidal from the hopelessness and the constant hellish torture of the pain.
I had survived a pregnancy born out of domestic violence and sexual assault. I gave up my beloved law enforcement career and my beautiful home and all my independence to move home and in with my parents - instead of the adoption id planned, my best friend if sixteen years suggested we keep the baby and get married and despite all this, I'd never been more content or happier with my life... But I told my husband I wanted to die... Because even though my life *situation* had NEVER BEEN Happier and more fulfilling... I was in CONSTANT HELLISH PAIN.
"I cant live like this," I told him. "I know," he agreed.
My primary care had me on 10mg vicodin once or twice a day, but it wasn't doing nearly anything. A half hour after the pill was in my system, nothing. I was taking benadryl around the clock to try to sleep through some of my pain. It wasn't working.
I was having nonstop intestinal bleeding from the acetaminophen in the vicodin, the hospital pinpointed it was the cause. Each new symptom (reynauds, the nerve pain, Mast cell rashes, arthritic pain all over, now tendon ruptures from the antibiotics and the interstitial cystitis (that WASN'T recurring kidney infections)...
Finally, I went back to my primary care doctor and laid it on the line.
I told him, "Look, I understand that it's difficult for you to prescribe pain medication long term and in any quantity because of the monitoring and concerns for your license, but here's my reality. I'm in pain around the clock that's not being controlled and its affecting every part of my life. "
I then handed him a *pain journal* I'd kept FLAWLESSLY vigilantly for eight plus weeks. I'd written down everything... My overall "scale of ten" pain score (every few hours), along with a second score for my ACUTE pain. One score for my allover body condition and a second score for the acute pain: so say I just reached for a book and my shoulder dislocated.
Body-wide I may be feeling like a 5, but now my shoulder is a 9 momentarily. I logged EVERY subluxation, every dislocation and how much each one hurt and for how long. I documented how long the acute pain lasted from each injury...in and out of the hospital, I kept it up.
I tracked every single accommodation i made to cope with my eds. Every nap I was forced to take because I couldn't keep my eyes open... Every time I sat down on the floor waiting in line because I couldn't hold the gallon of milk anymore... Every meal I skipped because I was STARVING ...but no one was home to feed me, each time I just couldn't pull myself together to make something and fell asleep STARVING.
I gave my doctor that pain journal and asked him to go through ANY GIVEN DAY with me, line by line. As he read it, he was forced to CLEARLY see, in front of him, in black and white, just how serious my condition had become. He could SEE how much my pain was affecting every single part of my life ... I wasn't sleeping, I couldn't eat, I was constantly hungry and nauseous and gaining weight despite bordering on starvation....
And I spelled it out for him; "I realize there's only so much you can do but what you CAN do is write me a referral and a reference to a pain management physician. Someone who *can* attempt to help me, weather its different medication, additional medications, injections, customized bracing, nerve blocks, you name it... But I can't live like this anymore and I need YOUR help. I need that referral so that I can get the treatment I need to get this condition under control."
I could see that I had him, but I didn't let up: "My entire life is out of control and as a patient, it's right here in your patients bill of rights statement (I pointed to the ACTUAL handout I'd gotten from his office manager) - it says that I have a right to your respect and *proper pain management protocol* and since I realize your hands are tied in regards to what *you* can do for my pain, I need that referral. I need you to advocate for me, to help me find a doctor that you can explain the specifics of my condition to, and to whom you can explain how long you've been treating me and how this condition has taken over my entire life."
In that moment, my entire life changed.
Forty eight hours later (after a minor hiccup, bc the first "pain management" office I was sent to "didn't do medical management" - so I would add to my advice to request a doctor who Does include prescriptions in thier possible care so that you have ALL available options)... But anyway... within 48 hrs I was sitting in a different office, again in tears, with that same pain journal in hand... But this time, it was **happy tears**.
(I also have to wedge in this suggestion here ... No matter how independent you are, please take someone with you who sees your daily struggles and can and will advocate WITH you that will attest to your struggles and how responsible you are with mediation and with wearing your braces and doing your p/t. It helps if this is the person you ask to help when you can't shower, the person who has to make your food when you can't and so on.
They are VERY helpful in getting your doctor's eyes opened. Let him or her talk, in a concise way, about watching your struggle. The doctors need to hear this from someone else. Sadly, if you're female, it often REALLY helps to hear it from your husband, boyfriend, brother or dad. It's not fair but it is true that many doctors listen to men and DON'T take women at their word.)
I was written prescriptions for an around the clock, slow, long-acting 60 MG morphine (bear in mind you'll need to be VERY open minded about what is prescribed. Do NOT shoot down medications unless you are LEGITIMATELY ALLERGIC. If you have a reaction, report it immediately - but don't INSIST on certain prescriptions or you WILL be flagged as "drug seeking")
I say this bc in the hospital prior, morphine never helped me in acute situations, but I tried it anyway. After THREE weeks of using the long acting KIND, it finally started to be processed by my body and it began to lay down a pain relief that dropped my GENERAL pain level to UNDER A FIVE around the clock!
I was also PRESCRIBED (Same day, same doctor) SIX 15mg oxycodone per day for breakthrough pain (later changed to 4mg dilaudid) which I've slowly voluntarily decreased my use of... Beware though, breakthrough medications effectiveness slows down RAPIDLY... You'll learn to only take breakthrough or instant release meds as ABSOLUTELY necessary.)
I was enrolled in the medical marijuana program a year later, after we'd tried (with no success) every muscle relaxer in existence...
That pain journal CHANGED MY LIFE.
So please, consider this advice:
- Be firm but understanding with your doctor.
- Try to keep the same physician long term, but if they absolutely refuse to refer you to someone who WILL see you specifically for your pain (even after pointing out that thier own patients bill of rights insists that they WILL treat your pain reasonably and responsibly) - you may have to move on.
- If you fire your doctor, do so PROFESSIONALLY and get your records to take with you. You can't just walk into a new doctor and ask for strong pain medications.
- You'll need to build a rapport and to be seen over a period of time to establish a relationship with new doctors, respect that.
- Lastly, try to be UP FRONT, honest, and as calm and rational as possible. Don't use your primary care or your pain doctor as your therapist. If you're depressed, have anxiety, yes, mention it, but please seek the KIND of doctor. Keep your medical and mental health care to the appropriate physicians when possible. (Let's face it: its not good to appear mentally unstable in front of someone you hope will prescribe strong pain killers- likewise, you SHOULD seek that support from a physician who CAN help you with mental illness)
And the two MOST IMPORTANT TIPS:
1) BE OPEN MINDED TO TREATMENT OPTIONS.
You should be willing to try everything they suggest if you want your doctor to take YOUR suggestions. Doc wants you to try compound creams? Leg braces? Water-based physical therapy? Fine. But keep your pain journal and insist they keep treating you until your pain is MANAGED reasonably. And if something makes it worse or doesn't help, give it a fair shot before putting your foot down.
AND 2) Have REALISTIC pain management goals;
You will never not be in pain... But setting the goal to be able to get yourself food and drink 90%of the time when you need it, to have pain levels below a 5 at least 50% of the time, to be able to get out of bed in under three hours OR to be able to shower unassisted (even if it means using a shower chair) ... That's not at all unreasonable.
You MAY have to do things that don't feel fair or right; Like being drug tested and paying for it- every single month. Like signing a contract agreeing to random pill counts and agreeing to call your pain management office before accepting emergency room treatment for your pain. You will have to use one pharmacy until the end of time, and not accept ANY controlled substance from your dentist from now on... That kind of thing.
But if you can get your pain under control... It's all worth it.
I want everyone with EDS to have access to the pain control options I have now. I want everyone to have the support I had in getting here but I can't do for you what my husband did for me.
I have long acting and immediate release medications. I have the capacity to be put out-of-my-mind on those WORST days when my hip has been out more than its been in and I can't breathe from the pain. I can force myself to sleep thanks to medical marijuana and the ativan prior to dental work (since the novacain doesn't work) helps me cope. I have a shower chair, a wheel chair, a window ac in my bedroom even when the rest of the house is not on, I have double KFOS (knee foot ankle supports), hip supports, ring splints, a great masseuse and a chiropractor I swear by at least once a month... You name it.
I don't have 10/10 untreated pain around the clock anymore, but I did once... And I did something about it.
You can too, I promise, there IS help out there. Just don't give up.
HOW LEVOQUIN AND CIPROFLOXIN CAUSED ME PERMANENT INJURY AND A LIFETIME OF PAIN...
One of the biggest things that contributed to my life-long battle with chronic-illness (in addition to the pregnancy that triggered the onset of severe symptoms) - was 100% the fault of Virtua Hospital and the HORRENDOUS admitting doctor who was put in charge of my care there. (*Please see the foot-note to this story) That's a story for another time, but I promise I'll tell it.
There is some debate about the facts - but this we know for sure: Shortly after my son's birth my husband and I both were diagnosed with Mono (well, to be fair, he had Mono, I was battling with the Epstein-Barr virus as I have immune system issues we didn't yet know about). My husband became jaundiced and was hospitalized, I had an IV infiltrate and and had a serious issue with cellulitis I began to battle with nearly permanent urinary tract infections and kidney infection symptoms.
I had sharp pelvic and abdominal pain, pain in my low back near my kidneys, burning and the constant feeling of needing to pee.... it was never-ending and so severe that I went to the ER nearly a dozen times because absolutely nothing would reduce the pain short of IV morphine or dilaudid. It became unbelievably bad during my periods, after sex, after bathing, swimming... I did everything possible to avoid UTI's - literally followed the handbook to a T - including giving up sex for quite a while despite the fact that I was newly married and very much in love. Nothing I did helped.
I was admitted to Virtua Hospital more than nine times in the year after my son was born, and several more times in early 2012. During the first few hospitalizations, I was told that I had MRSA in my kidneys... MRSA is a HIGHLY infectious staph infection. It HAD to have been given to me during a cathaterization... and up until that point I'd had exactly ONE catheter in my entire life: DURING MY C-SECTION... at Virtua Hospital. Isn't that nice? I was treated like a bio-hazard. Everyone who came into my room suited up as if I was an E-Bola patient and even friends and family were supposed to wear gowns, masks and gloves to come see me. My newborn child who I'd care for at home, skin to skin, I was told was not allowed to visit me in the hospital (they got WW-III about that, and I won, btw.) I missed my own baby shower (it was after my son's birth) because I was in the hospital, and I was in quarantine, so they wouldn't even let me guests visit me.
So the onslaught of antibiotics started. They pumped me full of antibiotics and I never began to feel better - only worse. The only thing that ever seemed to help the UTI symptoms was over the counter AZO (which I still use to this day on a regular basis) - even the various antibiotics didn't keep the infections at bay for more than a week or two. Some of my hospitalizations were LITERALLY just days after I'd been released. I was repeatedly treated with two strong antibiotics: Levoquin, and Ciprofloxin.
Each time I would get a bag of IV antibiotics, the pain would come. I felt as if they were pumping wet cement into my body and it felt as if every joint was hardening to a solid. I felt like I couldn't move - the fire-y pain that shot through my veins was worse than the broken jaw, worse than third degree burns, WAY worse than the c-section, even worse than the bowel impaction and intestinal tears I'd survived... it was HELL. I reported to the nurses my horrible pain. Occasionally a doctor would up my dilaudid from every 6 hours to 4, or add Vicodin on top of my morphine, but nothing was ACTUALLY helping. I was just getting sicker and no one knew why.
I'll tell you another time about the world war that went on between the doctors and I, but suffice to say that if a hospital can't explain your symptoms, they have two responses...
1) They'll tell you that they don't believe you're actually sick because your symptoms "don't make sense" or because nothing you're complaining of is showing up on their tests.... and they'll discharge you, even if you have VISIBLE symptoms, such as bacteria or an infection they can confirm.... they'll discharge you, after having you on anti-inflammatory medications, pain medications, antibiotics, probiotics and ran a whole bunch of tests.... and they'll send you home with NOTHING. The hospital will flat out tell you that they don't know the answer and that they "can't keep you here forever" and will simply send you home with NO answers.
2) They'll imply that perhaps you have a mental illness, that the pain is in your mind, or worse, that you are simply there seeking pain medications because you are a drug addict. I repeatedly told the doctor after being trearted with antibiotics that I was experiencing SEVERE and worsening pain... and in response, the admitting doctor flat out accused me of "drug-seeking behavior" claiming that my report of pain made NO sense and COULDN'T be true. (*Please see the foot note below about the serious affects of the Fluoroquinolone family of antibiotics.)
*I was accused of this once - by the same idiot doctor I mentioned above and in the blog post (here).
Why? Because at the time, in her words "No one being treated for a kidney infection SUDDENLY has sharp severe pain in her hip, shoulder and lower back. It makes no sense." Seven months later, a black-box warning was added to the Fluoroquinolone family of antibiotics- including LEVOQUIN and CIPROFLOXIN. Read more about this in the footnote or (here).
Basically what it comes down to is this- SEVERE PAIN as a side-effect of those antibiotics is a sign that something is VERY very wrong. And she continued to treat me with those same drugs, over and over and over, all the while, claiming that I was "over reporting" my pain and wasn't being truthful. In the end, her ignorance and ignoring my reports of pain, ended in PERMANENT damage to my joints, throughout my entire body, that I now have to live with forever. .
** Footnote Regarding Fluoroquinolone Antibiotic **
Approximately 7-9 months after I was accused of lying when I reported severe pain during and after IV antibiotic treatments - the FDA released new Black Box warnings about the SERIOUS dangers associated with these antibiotics. Here's the information from the FDA.
Warning: Fluoroquinolone Antibiotics May Cause Permanent Nerve Damage.
“The U.S. Food and Drug Administration (FDA) has required the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs be updated to better describe the serious side effect of peripheral neuropathy. This serious nerve damage potentially caused by fluoroquinolones may occur soon after these drugs are taken and may be permanent...
Peripheral neuropathy is nerve damage in the arms and/or legs, characterized by “pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or sense of body position.”
Due to their tremendous health risks, fluoroquinolones should be reserved for treating serious bacterial infections that won’t respond to any other treatment, when the patient is made fully aware of the potential for serious adverse events. Instead, they’re often inappropriately prescribed for mild conditions like sinus, urinary tract and ear infections.
In fact, fluoroquinolones are among the most commonly prescribed antibiotics in the United States. I highly recommend you take pause before filling a prescription for these drugs, especially if you have a “routine infection” that has not been treated by other agents that have a safer side effect profile.
You should not expose yourself to this degree of risk unnecessarily! The dangerousness of fluoroquinolones definitely warrants some serious discourse with your health care provider about whether they are really necessary, versus safer treatment options.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.