Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

elhers-danlos syndrom

terror8396tterror8396 Posts: 1,832
edited 06/11/2012 - 8:39 AM in Chronic Pain
i know i am beating a dead horse but my problems with the media have hit an alltime low. this week on the program intervention on a&e a woman has apparently eds. i have never heard of it but she is taking th efenatyl lollipops which i take for breakthrough pain. to put it bluntly she is a major wackjob. she tells her family that colors, sound, being with them causes her problems. well a dr who is an expert on this syndrom says she is full of bull caca to put it mildly. she controls her family and they have spent 1/2 million dollars on her the last year, their retirement fund. mom actually believes this story. well this is put on national tv and now people think that people who take narcotics lie and will now go crazy because of this. it is important to me because now the culprit is the fenatly lollipops which is now shown as the villian. this woman was shown running down the street and dancing. apparently people with eds can't do these things. so the message is people who take narcotics lie and act crazy which is backed up by experts on tv. here is another program which televised the evils of narcotics
I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.


  • What exactly did you expect a show about addiction to present..?

  • My DH said she was full of it too. That disease sounds really painful but I immediately doubted her when she did things to contradict herself. I've taken Fentanyl patches and NEVER had an instance of wackyness like this nutty chic did. Of course the lollypops are fast acting and she was misusing them too.

    At the end she was diagnosed as being delusional (big surprise) and we all know that Fentanyl pops didn't cause her crazyness.
  • and I am sure there are people out there who will figure out that this girl was abusing her narcotics and others who will not know better. What I wonder about is how she managed getting so many prescriptions for the Fentanyl. How is this possible when there are supposed to be controls out there to avoid this?

    Best to all,

  • At one point in the show, they said she had seen over 50 doctors over the course of 8 years, so obviously she was doing some shopping.

    I actually had to giggle earlier today because of this whole topic.

    On another forum that shall remain unnamed (but is a very logical posting place for the show), there are lots of posts from people with EDS, most of whom are upset that A&E portrayed the disease so inaccurately, damaged the "image" of EDS, and will result in their inability to get proper diagnosis and care.

    In between the posts from EDSers, there are posts from some recovering addicts who were equally offended that the show wasn't more clear about the woman having mental health issues that were far more prominent in her behavior than her addiction problems.

    And here, on a chronic pain board, the post on the topic is because they portrayed chronic pain sufferers and people who use narcotics as wackjobs.

    It seems to me that perhaps the offense taken to this particular episode is based more in the internalized fears of the person watching. :?
  • i believe the media managed to offend a bunch of people, chronic pain people, eds people, recovering addicts, and not only offended, exaggerated and basically lied about things. i can't believe she saw 50 doctors and did not get called on this. pain drs are so paranoid about getting into trouble with the dea that they check up on new patients. mine will check up on insurance and see who and what are prescribing meds. i believe insurance companies will also notify doctors if they see abuse. but she definitely was a wac job along with her mom. i take the fenatyl lollipops which i have mentioned and i use 700 mics a day while hers was 200 mics a day. i also have mine compounded and basically they are supposed to be for cancer patients and this is why insurance companies will not pay for them sometimes. at least mine does. they are great for breakthrough pain. is there anyone else that uses them for breakthrough pain? as a post script, i looked through old medical books and never saw eds in any of them. is it new or is it an old disease? i never heard of it until i saw the show.
    good luck
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I saw that show last night. I thought it was pretty clear right from the start that the woman was not in her right mind! I feel bad for people who do have that syndrome - some people will probably stereotype them to be all like her. Which is totally unfair. Some people with addictions have underlying mental health issues that have gone undiagnosed - which turned out the be the case with her. Hopefully in the end, she'll contineu to get the kind of help she
    really needs.

    Anyway, that's just my 2 cents - for what it's worth! :H
  • Is a much more common disease than you would think- many are underdiagnosed and usually only those with severe hypermobility symptoms have pain.
  • I realise this is bumping an old thread and for that my apologies.

    I just wanted to add something about EDS from someone that has to deal with it on a day to day basis.

    The type I have is Type 3 - Hypermobility.

    This is not to be confused with double jointedness or loose ligaments, type 3 is a collegen defect resulting from an abnormal genetic sequence. The elasticity of the collagen produced is abnomally stretchy and doesn't tether the joints effectively. There are other indicators in people with EDS, velvety skin, muscle fatigue, dental problems and chemical tolerence as regards painkillers and medication.

    For example, the last time I attended the care of a dentist it was at the tender age of 16, after 12 injections of local anaesthesia the dentist boldly asserted that the pain was all in my head and that that many injections must have numbed the area whereupon he extracted the nerve from a molar and the effect of the injection was less than that of a paracetamol for most people.

    This gives a sort of double whammy effect, I have disc degradation, joint degradation and ineffective ligaments. I also have the associated pain but no real way to control it as even opiates have a minimal effect on the pain, both muscular and nerve, in my case sciatica.

    I have had a discectomy and laminectomy on the L3/L4 and L4/L5 discs and although there was immediate relief after surgery particularly with the sciatica this has now returned over the last ten years as the discs themselves continue to degrade and wear excessively.

    I'm not one to be ruled by self pity and genetically or environmentally I have the ability to remain stoic throughout. Most of the time I use no medication, to the disgust of most GP's I self medicate, always with the guidance of my GP who is happy to discuss medication and pain management, this in itself seems like something of a rarity more and more these days and I feel blessed to have a GP who has an interest in the science of medicine.

    I am hoping at some point in the future to elect for a multi-level disc replacement as I feel with the quality of the discs replacement can only improve my situation.

    The real horror of it all is that EDS is a genetic trait and I have passed it to my first born. As yet it causes him no problems as it caused me no problems as a youth. But at some point I have to face the fact that he will start to literally fall apart too.

    To any fellow sufferers of EDS, there are a few things I have found beneficial:

    We have an enhanced ability to build muscle, if you can, try to enhance your musculature to support your ligaments. As I have aged the muscle takes on a lot more of a support role for your joints.

    Try not to place too much emphasis on pain management through medication, the chances are that you will gain minimum relief as opposed to strengthening your core muscles or using hot/cold therapy or even meditation.

    Once you feel fitter take up some low impact but strengthening sport, my choice of skateboarding may not be for everybody but the aerobic benefits are good, it's excellent for flexibility and balance and once you're accomplished it's very low impact.

    Good luck to all with upcoming surgeries, I hope you all find respite.

    Reading some of the stories on here is truly inspiring and while I certainly don't claim to imspire anybody I just wanted to try and set the record straight, although I've not seen the program the core of the lady in questions problems was assuredly her drug addiction and not her EDS!
This discussion has been closed.
Sign In or Register to comment.