After graduating college, Linda found success working as an extra in Hollywood, achieving the glamorous life she always wanted. But her dreams died when she came down with Ehlers-Danlos Syndrome, a rare disorder characterized by joint dislocations. Linda started taking fentanyl, a painkiller 100 times stronger than morphine. As her painkiller use escalated, she claimed that different sources were causing her pain, including electricity, energy, colors, and even specific people. Despite Linda's wild claims, her mother clings to the belief that Linda's pain is real and she must do everything to help her, including depleting the family's savings and sending her son to be Linda's caretaker.

 

Missed the episode? Watch it here.

Sigh.

Was so happy to hear that another person figured out they had Ehler's Danlos Syndrome from the Rebroadcast of my show :))))) So worth all the heartache!!!

I know nothing at all about EDS (and it sounds absolutely terrible) but I do have a mom who has chronic and debilitating pain from a botched spinal surgery in addition to a painful gastric condition called gastroperisis, so I do understand pain and I am so offended that Linda is allowed to go to medical conventions and give her opinion on any disease state to physicians and write on here advice to people on how to take pain meds and how they work. She clearly has no idea and I don't blame people who genuinely suffer every day from what sounds like a very painful and poorly understood disease. It scares the crap out of me to think that there might be even one person who takes her advice to heart and inadvertently harms themselves because of it.

I need help welfare wants me to get a doctor say I am permanently disabled yet my family doc doesn't do anything for me and doesn't even treat me for anything even refused to write me referrals and told me to go find my own specialists since then I have been fully Dx with Chiari, EDS, and Syringomyelia but welfare took away my medicaid and food stamps and told me to reapply to get them back so I did now they want me to go to a doctor to fill out a form stating I am disabled and can't work and apply for social security (which will cut my unemployment immediately) but how am I suppose to do that with a family doc who doesn't help me or even believe I have severe health issues and on top of that NO MEDICAL INSURANCE and barely any money coming into our house that we are behind in everything since my husband lost his job???? Does anyone know how I can do this or of a family doctor near Pittsburgh that knows how bad all these conditions are and would be willing to fill out this form?? What do I do??

EDS awareness!!!!! or is that 2?

You said it, Cheryl! Unless we have CANCER, no one thinks we could possibly have any real pain. What they don't know is, there are many days that we have pain just as bad as the worst pain cancer patients have...but we don't get to die and get away from it...we have to live with it, AND the jack-BLEEP docs who think we aren't in enough pain to need real help. We don't have cancer, after all!! UUGGHHHH!!! I'm so blessed to have FINALLY been put into the hands of a great team of doc who really know about EDS, and help me. But most of you don't, and I HATE THAT!!! I feel so guilty, not having those battles anymore, when you still do. I pray all the time for you all to find what I did....VERY SOON.

You catch more flies with honey, Linda. I know you've been through a great deal and I believe you do have chronic pain (for whatever that's worth). I don't get your extrovert nature and need for an audience though. And then insulting your audience...that's kind of shooting yourself in the ass if you ask me.

I chanced into research led by a Dr. Li.
http://www.physorg.com/news/2012-01-ferroelectric-soft-biological-tissue.html

That makes a lot of sense, considering that electrical impulses happen in the heart. Note that follow-up research is being done on whether the collagen (EDS) or elastin is the affected component.

And I thought, then what if people with alleged electrosensivity are being affected by way of the heart? Linda said she has diagnosed heart problems.

Then I Googled...

http://www.emrstop.org/index.php?option=com_content&view=article&id=45:dect-phone-showed-to-effect-heart-rates-in-the-electrosensitive&catid=24:wireless-lan-a-dect-dangers&Itemid=29

http://electromagnetichealth.org/electromagnetic-health-blog/cordless-heart/ (text version)

Dislocations due to cell phones and such still most likely is nonsense and psychosomatic. Note that the study suggested that some people who claim electrosensivity might not actually be electrosensitive.

Predictions:

Research will show ferroelectricity is in the collagen.

Linda's weird friend has untreated/undertreated heart problems.

With treatment, sensitivity to electronic devices lessens.

Yes, I am awesome.

My geneticist wrote in my report that EDS patients are undermedicated

The goal should be a low dosage of pain meds. I'm only 26, I have EDS (diagnosed at the age of 23). If I max out pain meds NOW I will have no where to go when I'm 40. I don't want to be addicted to pain meds, I don't want to become some nut who is on Intervention claiming that the amount of pain meds I take are necessary for pain control. I have 5 kids. I have to be able to function to care for them, and for myself. In the past 3 years I've only had to increase my pain dosage 1 time, and that happened 3 months ago because pregnancy was making it completely difficult to function. Even then I am on a super low dosage of Dilaudid, my pain clinic doctor told me the dosage I'm on in nearly unheard of in the EDS community/and for someone who has dealt with Chronic Pain for years.
You've told people to not have surgeries. Such horrible advice! I had both of my wrists fused in 2010 because the pain was so severe, and they were so badly and permanently dislocated I couldn't pick up a fork without debilitating pain. I will ALWAYS turn to some other method for help with my pain before I will resort to flooding my young body with narcotics. My wrists fusions were the best thing I've ever done. Eventually my ankle will have to be fused (unlike YOU I can't run, or dance, and I limp most of the time), and my elbow will be replaced. I'm too young for the elbow surgery, and the ankle isn't bad enough yet. Those surgeries help to keep my pain low. As does Physical Therapy, Occupational Therapy, meditation, Tai chi, ect. NEVER will I resort to just taking more pain meds, and to tell someone they should is absolutely awful advice. Your continuous posting that people who aren't in Chronic Pain shouldn't be treating Chronic Pain patients is absurd. My OB is a male, and yet he's delivered 4 out of 5 of my kids. He's never experienced child birth before but he's still the one I trust the most. Should only cancer doctors BE cancer doctors if they have experienced cancer? No. My pain med doctor is in his 80's. He was in Vietnam as a doctor. He is amazing, he has training, and I trust HIM and his advice on how to take my pain meds, what kinds to take, and when to up my dosage well over YOURS (a person who is an addict and was diagnosed with a delusional disorder - perhaps narcissism?) You are not a medical professional. Stop acting like one.