My Chronic Pain Story
– Doctors treated me with suspicion and accusations of addiction when I sought help for my debilitating but invisible undiagnosed pain
After a lifetime of seemingly unrelated physical complaints and inexplicable pains that kept worsening, I was finally diagnosed with Ehlers-Danlos Syndrome (EDS) at the age of 55. EDS is caused by a genetic flaw in the production of collagen, leading to connective tissue defects. Weak tissues stretch or tear, joints shift or dislocate spontaneously, and body parts aren’t held together properly, resulting in chronic pain and many other health problems.
During my forties, the pain and exhaustion from my still undiagnosed EDS worsened significantly. Sitting at a computer all day was straining joints and muscles in my low back, and even exercising didn’t help anymore. The daily pain distracted me from my work and limited my activities, so I began a very long, futile quest for a medical solution.
I went from one doctor to another and tried every suggested test, procedure, treatment, and therapy. Still my pain continued and no one could figure out why I was in so much pain in so many places. Eventually, my neurologist prescribed me opioids so that I could control my pain well enough to continue working and remain active.
By the time I stumbled into my fifties, my life was becoming unmanageable. My ever-increasing pain and fatigue took more and more activities and options from my life; I could barely function at work. Finally I couldn’t do that anymore either, even with pain medication.
Until my pain became too disruptive, I had enjoyed a successful high-tech career. I worked in the exciting and stressful IT field and spent my free time active in the outdoors. I was an endurance athlete who voluntarily pushed herself into intense pain and suffered frequent injuries from these extreme physical activities.
I rode horses in 50-mile trail races, ran off-road half-marathons in the hills, and annually bicycled four to six 100-mile day-long events in the steep coastal hills. I had always been proud of how tough I was. But eventually, the persistent and pervasive pain overwhelmed me.
After twelve years of handling my opioid pain management, my doctor retired. The neurologist I was referred to had drastically different beliefs about opioids: she didn’t want me to take them at all “because they weren’t good for me”. One after another, I optimistically pursued her alternate ideas for finding and treating the cause of my pain, but nothing helped.
When she couldn’t find the source of my pain, she eventually came to assume there was none. She began to doubt my honesty and repeatedly pressured me to stop taking opioids.
But when I finally gave in and cut back, my pain increased accordingly, both in intensity and frequency, and interfered with every aspect of my life. After a few months of virtual confinement on the couch, life no longer seemed worth living. I lost hope and became desperate, depressed, and suicidal until the intervention of a therapist convinced me to try again.
Many doctors tend to overlook or minimize their patients’ pain, and they rarely mention the damage caused by chronic pain itself. I was repeatedly told opioids are bad for me, yet these same doctors never told me about the accumulating damage to my nervous system from letting my pain continue uncontrolled.
My pain only worsened as I lost the physical conditioning I had struggled to maintain. Any sitting, standing, or upright movement would irritate nerves and trigger muscle spasms. Without opioids, I knew I couldn’t control the pain once it started, so I became reluctant to initiate any activity at all. I was housebound, depressed, and increasingly fearful of untreated pain.
Eventually I sought out a more sympathetic doctor, who now prescribes enough opioid medication to make my life bearable. While opioids don’t eradicate my pain, they dull it enough to make it tolerable. Relieving the pain also relieved most of my depression, so I can do some research and writing almost daily.
With the pain relief provided by opioids, I’m able to get out of the house and get some exercise, and I’m only on the couch a few hours a day. With my body and mind active again, I can manage my remaining pain well enough to find some enjoyment in life, be less of a burden on my loved ones, and contribute to society again.
While doctors and the public are bombarded with sensational media stories of addiction, I want to speak out and give a voice to the untold numbers of people suffering their pain in silent desperation. My mission is to refute the picture of “chronic whiners getting addicted to narcotics” and show how opioid medications can save people who suffer from chronic pain from the depression, hopelessness, and complete disability caused by untreated pain.
Amen sister, thank you! Very well said, and glad to find you/your blog on our shared condition. I like to say Ehlers-Danlos Syndrome isn’t rare, it’s rarely diagnosed. Also, I highly recommend the book “Validate Your Pain!” by Chino and Davis if you haven’t read it yet. Says the same thing – we are under-medicating most patients due to a few bad apples causing near hysteria.
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BTW: Love your “mousie” – I shared my home with a succession of several mousies that I let run free in my cabin. They got along with people and our dogs and were so darn smart!
But eventually I couldn’t take the heartbreak of their short lives anymore :-(
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Hi Jan!!! And Oh how much I love this story!!!
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Aw thanks – I’m still surprised by what a large void she’s left in my life for such a small creature. Glad you enjoyed my story. And hello again Kenda – we meet again! (Great minds read/post alilke methinks, smile.) Keep up the good fight. I see awareness slowly but steadily spreading.
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I was recently diagnosed with EDS (type II) after 4 days of tests and a lifetime of pain. I’m only 30 but I have no idea what it is like to not be exhausted and in agony. I had all these unrelated symptoms and agonising pain but no one could help. I was told by parents I was being dramatic. Finally I got a diagnosis for fibromyalgia and that helped me get medication for the symptoms but it didn’t really fix anything. I’m a 9/9 in hypermobility and have trouble staying awake all day because I am so exhausted (despite sleeping for 10-12 hours/night). I have horrible POTS, bruising, muscle weakness……and now I am supposed to get re-diagnosed because I was tested in the UK and I am in the USA now. Very difficult. Today is an especially bad day…I have to work 9 hours and just moving my head or using my hands is making me cry. But I cannot survive without working. At the moment I work from home but I’m looking at (somehow) rejoining the office world as I don’t make enough money to do more than live paycheck to paycheck and I cannot work indefinitely. It is very discouraging to be unable to do practically anything but lie down and try to breathe through the pain.
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I’m so sorry for what you’re going through. Perhaps you could see a pain mgmt doctor and get some effective medications prescribed (usually opioids). Getting my pain under control is what enables me to live some semblance of a life and continue being at least a little productive.
Carefully exercising what muscles you can, eating healthy, and trying to get good sleep (melatonin helps) can also make a big difference. You may have gotten into a cycle of overdoing it, then being exhausted and crashing, and then as soon as you’ve recovered, trying to make up for lost time and overdoing it again. That’s what happens to me if I’m not careful.
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Thank you for your story!! I am grateful for your openness and I hope you speaking out, and others relating to your story will spread awareness.
I too led a very active and energetic life, worked hard for many years starting young, and was always healthy and fit until the pain became too great. I am 42 now. I struggle now with the balance of getting enough exercise to help my reduced metabolism and overdoing it, resulting in days of being in too much pain and fatigue to do much of anything.
I was recently diagnosed with EDS after spending my life having joint pain – especially the knees, hips, wrists and feet- , a Hiatal Hernia, GERD, Insomnia, Depression and Anxiety, being diagnosed with Fibromyalgia, Chronic Fatigue, Thyroid Disease, Osteoarthritis, loss of my ovaries, than uterus, gallbladder and appendix, labral tears, massive food allergies, teeth and gum pain, TMJ, headaches, etc.etc.
Ridiculous and annoying to say the least!!
So now I have this diagnosis. I don’t know whether to be relieved for having a name to all the symptoms/illnesses put together, or to feel even more frustrated with the current resolution that there is no cure for EDS, only symptomatic treatment for pain, nausea, etc.
I say we create more awareness in hopes to understand this better so we can find a solution!!
In the meantime, personally I am working to overcome the idea of things getting worse and I am working hard to be positive and not let the obstacles get me down. It can be easy to get down and feel frustrated to not be able to do what you could before.
I have changed the way I do things to find a healthier balance. I can’t run around all day and be on my feet like I used to, but I can swim and do other exercises that are more gentle on the body overall. I have ironically found that a Depression support group is more optimistic and holds a sense of humor more so then some chronic condition groups.
I don’t want to be labeled a sick person, yet need for people to be understanding of my limitations. It’s a fine balance, not without disdain and frustration, but I refuse to be labeled a victim. This has been frustrating as people are quick to throw out judgement when you can’t do things and some doctors are suspicious of the many medications given to treat the symptoms. So it can be frustrating when people don’t understand, yet give you a hard time for not being able to
keep up, and then judge you for the different specialist doctors you need and the prescriptions that are supposed to make it all tolerable.
Have you experienced judgement for being sick too often or ever been labeled a “victim” of illness?
I am working hard to not be seen that way, but wonder if you or anyone else struggle with judgement?
I’m hoping that knowledge brings about hope and possibly a cure down the road.
Thank you again for opening up!!
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Thank you for sharing your story in such a detailed way. It makes me feel like maybe I’m not so crazy and connects the dots to so many things. My cousin was recently diagnosed with EDS and I now think that is what is wrong with me as well. Question is, how do you figure out the right exercise that will not cause more pain?
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To answer your question about exercise: it’s mostly a trial-and-error process.
I first look for the obvious problems in an exercise, like undue stress and bending of joints (deep knee bends), high impact (jumping jacks), or awkward positions (like wrists in push-ups).
Then I try the exercise in its mildest form and wait a day to evaluate the results before doing the exercise more vigorously. The more strenuous version of an exercise can sometimes cause muscle aches even two days later, so that’s why I have to write everything down to make sure I remember the exact order of what I tried and the location of subsequent pain.
With so much planing, documentation, and careful observation of muscle, I feel like an ongoing clinical research study!
I was told that most physical exercises, including physical therapy are dangerous for people with EDS. It would be far better to either use a pool to do the exercises you want to or ask a specialist for things you can do to help exercise. I was told however that the best way to exercise is to pick short things like a walk around your home for 5 minutes, and then wait at least 20 min and then do it again. The problem with exercise (from what I’ve been told at least) is that the longer you do it, the more fatigued your muscles become, and then they cannot hold together the joints you need them to. So the best plan is to do something for a short time or a short number of reps and then break for a bit, do something else like writing or reading or whatever, and then try the next thing.
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You are absolutely correct about doing exercise is short spells.
I’ve experienced that directly when I’m hiking or riding my bike. If I go on too long, it only gets harder and harder because of what you mentioned: fatigue of the tissues allows slack, which reduces power transfer, and makes muscles have to work even harder.
If I rest a while, I can do repeated short distances much better than one long distance.
I’m glad to have found your blog. I have been diagnosed with fibromyalgia but it is has been suggested I may have EDS as well.
I don’t know how I found your blog but I am so glad I did. Your experiences resonate with me.
I have a condition called fluoroquinolone toxicity syndrome (FTS) as well as fibromyalgia ( although I wonder if they are one in the same). FTS (also called fluoroquinolone associated disability) is caused by fluoroquinolone antibiotics (Cipro, Levaquin, Avelox) and shares many features of EDS (which I didn’t know until I read your story). Among other things, FTS causes connective tissue damage and deterioration. Tendons, ligaments, and fascia are usually the hardest hit but it varies from person to person. When people die from FTS it is usually because the aorta has blown out due to loss of integrity – I read that this also happens with EDS. Like EDS This syndrome causes me to be in pain all day every day. The only way I get even limited mobility is through the use of opioids.
I am unable to work but when I did I was a drug and alcohol counselor. I have seen both sides of the opioid debate. I got judged and ridiculed and lost relationships because I decided to take opoid painkillers. I never thought I would be compelled to advocate for the importance of narcotic painkillers – but here I am! The truth is I would be dead without opioids because the intensity of the untreated pain made suicide seem like an option. I am grateful I have the rare gem of a doctor that gets this. Thank you for shining a light on this often forgotten reality!
I am in the process of putting together my own blog to help educate people about FTS and to advocate for understanding and humane treatment. Thank you for all the information and for being a big inspiration! I greatly look forward to reading more of what you have so wonderfully put together here!
Finding this made a rough, painful, rainy night better!
Thank you so much and all the best to you!
my website and blog aren’t done yet but here is the address anyway for anyone who might be interested down the line: http://www.floxiemoxie.com
(a person who gets hit with FTS is called a “floxie”)
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Your story is amazing – it seems like your use of these antibiotics *caused* EDS. Is it possible you had EDS all along and only became aware of it after it got so much worse?
We with EDS have been warned to stay away from this kind of antibiotic: https://edsinfo.wordpress.com/2015/05/29/update-fluoroquinolones-antibiotic-alert-especially-with-eds/
It seems like there’s a very close connection between EDS and FTS. Perhaps one causes the other or perhaps they are the same thing?
After reading more about EDS, what are your thoughts?
That isn’t possible. EDS is genetic with common family traits (even to the point where many families have their own form of EDS). FTS is a syndrome that is acquired through some outside influence (like the antibiotic). As they wrote, FTS is not EDS, but shares many of the same symptoms. It is like how for years I had two doctors that each thought I had a hard to detect form of MS. I was given all kinds of weird drugs for that. One doctor even thought I had Lupus.
Someone on another site I’m a community member of (who is also a long-term pain patient) mentioned that in the US there’s very few really good doctors. Most doctors, even specialists, only know how to treat a few things. She calls them McDoctors and it really is fitting. The reason is that if what you describe as symptoms don’t fit into their “menu” of possible diagnosis (like heart disease), they either try to stuff you into that category, refer you to someone else, or plainly claim whatever you are experiencing must all be in your head. Heck, look at Avril Lavagne. She contracted Lyme disease while on a hike in Canada and started getting really severe symptoms. However, whenever she went to a doctor, they would test her for something they knew, like mono, and when that came back negative tell her it was all in her head and to seek mental health assistance. It took her many years to even get diagnosed with Lyme disease.
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I have recently found that the UK seems to be at the forefront of research into EDS. There are lots of articles and information being published there along with a whole bunch of ongoing studies too. Honestly, I use the NHS website along with a few other articles and print copies that I now take to my medical and dental appointments since no one seems to believe EDS exists or understands EDS at all.
I, like you, was pretty young when diagnosed (I got diagnosed at 28). I’m now 36 and it is ridiculous finding doctors that know anything about EDS here, let alone any kind of treatment. My own pain specialist confuses it regularly with fibromyalgia and I constantly have to educate her. The only advocate for me I’ve ever found is one rheumatologist, the doctor that originally diagnosed me (he even got a geneticist in Maryland to help for free since I have no funds for such an expensive test). Up til that time, I had been dealing with much the same things you all describe: pain that went untreated for more than a decade, extreme hypermobility that was compounded by my aptitude for things like yoga and ballet causing the situation to get worse as I got into my twenties, and of course, a whole myriad of doctors who tried thousands of dollars in tests before telling me it was all in my head (but how can you explain that you know something is very wrong when something like your hip is completely subluxed and immobile – especially when you don’t even know what a sublux is??).I am currently in so much pain, I cannot work.
I want to share with you all something I found thanks to all those UK articles and researchers that is really helping me: kineseo tape. It doesn’t take away all the pain, nor does it stop all the dislocations and subluxes, but it does provide a lot of extra stability to those stretchy ligaments and in turn, makes things that may have been impossible to do before now possible. I have severe issues with my jaw locking and/or dislocating and it often is so painful to eat a regular meal that I quit after just a few bites. The tape has changed that, and I’m able to eat now. Also, my right shoulder and knee were both so painful and unusable that I found the simplest tasks too painful, even with medication. The tape has actually changed this and I’m now able to get around a bit more, and have even been able to go for short walks near my home once or twice a week. I would never have dared to try that before out of fear of a dislocation of sublux that rendered me unable to move. I hope this helps someone else as much as it has helped my life. If you want some info on how to apply the tape for an EDS patient, you can find a presentation online here: https://ehlers-danlos.com/2015-annual-conference-files/Chopra.pdf (do not use the methods shown in the tape’s packaging – either have a doctor who knows EDS help you apply it or use the presentation).
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Congratulations for finding a technique that worked for you and thanks for sharing it. We have to pass around anything we find helpful so that others can try it too. Sometimes such suggestions work for me, sometimes they don’t, but I’m glad to find something else to try.
I wonder how we together can be more effective at helping to educate doctors, help patients who’ve lost hope and shut down those like Kolodny whose aim seems to be to make money and fill his rehabs.
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God Bless you and your blessed endurance for answers and relief! You are truely an endurance champion to a level most can’t begin to comprehend to make it so far and keep going:)! Thank you for you inspiring and very informative post. EDS throws so many continuous ‘curve balls’ and new health issues always keep appearing on top of the ever present pain…But my dazzling zebra community gives me so much hope and emotional support, especially during this current ‘political storm’ that jeopardizes us so greatly, Everyone is in my constant thoughts and prayers, till All of us can be safe and receiving the individualized care and intractable pain relief we deserve!:)
The Insufferable Movement, Lindsay
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