Hi! I will keep this as up-to-date as I can, given my time and pain limitations. I will also keep links below to the older lists, this way you can see how things have changed. I will put my list of supplements and medications here.

November 2011 -

This is currently the pain plan I am on. As you can see, it is much more reliant on western meds and prescription pain killers than two years ago. I do take a few supplements, but not near as many as I was taking. This plan will likely be changing again fairly soon, but I wanted to get it up here for you to see. I have been on this for almost all of 2011. I am managing the overall pain better than before I was doing this, and the extra pain from subluxations, daily activity, etc., with the extra pain killers. The added muscle relaxers do seem to help, and the Valium seems to help with the Restless Leg Syndrome at night. I know my body has just been a toxic wasteland on this routine, but I was at a point where I couldn't handle the pain anymore and the holistic stuff wasn't doing any good. I am working to find new holistic things to do/try and a new/better pain plan now that I have moved states and am finding new doctors. I will keep everyone posted.

xo dani

  • Oxycontin 15mg 2x day - for pain
  • Savella 50mg 2x day - for fibromyalgia-like symptoms
  • Oxcarbazepine 600mg 2x day - for bipolar disorder
  • Citalopram (Celexa) 40mg 1x day - for bipolar disorder/depression
  • Elmiron 100mg - for interstitial cystitis (was diagnosed with this in 2010)
  • Midodrine 10mg 4x day - for POTS
  • Fludrocortisone Acetate 0.1mg 2 tablets 2x day - for POTS
  • Propranolol Hydrochloride (beta blocker) 10mg 3x day - for POTS
  • Sennakot S - 6 tablets 2x day - for constipation from pain killers and EDS
  • Ambien 1x day - for sleep
As needed:
  • Norco 10/325mg up to 4x day - as needed for pain
  • Valium 10mg up to 3x day - as needed for pain/muscle relaxer
  • Flexeril 10mg up to 3x day - as needed for muscle relaxer
  • Lidoderm patches 5% up to 3 patches every 24 hours - for flank pain
  • Phenergan 25mg up to 3x day - for nausea
  • Imitrex 6mg injections - as needed for migraines
  • Simethicone 180mg - as needed for gas
  • Ventolin (Albuterol) 90mcg - inhaler for asthma from allergies

  • Magnesium 250mg 2x day
  • Multi-Vitamin 1x day
  • Calcium Citrate with Vitamin D 500mg 1x day
  • Vitamin D3 5000iu 1x day
  • Calm Magnesium Powder (Magnesium Citrate) 325mg 1x day 

Medication and Supplement List - April 2010

Medication and Supplement List - June 2009


Monika said...

Hi Danielle,
Thank you for your blog.

Have you tried prolotherapy or know of anyone with EDS who has?

Any thought?

Nancy Johnson said...
This comment has been removed by the author.
Lainie said...

Ok you are just adorable! Thank you for your really organized, easy to maneuver website and your honesty and information. I started at 18 years old with symptoms and only a few years ago was diagnosed with EDS ( I have a really high ANA so they always just assumed it was Lupus). I have yet to do any genetic testing but your courage has inspired me, finally at 45 years to get my ass in gear. It has been a rough winter. Dropped and broke 2 plates last night trying to make dinner! Couldn't zip the ziplock bags for my kids lunch this morning because of the pain. I signed up for your blog and look forward to it. YOU ARE A WARRIOR GIRL! I hope today isn't too awful for you.

Sarah Cromwell said...

Thank you so much for having this blog. I'm pretty recently diagnosed after a ten year search to find out what is wrong with me. Now that I know what's wrong, it is so wonderful to know that there are other people out there struggling with the same issues that I am having. I also really appreciate you listing your meds. I'm still working on getting meds for my "hidden" disease. I hope all is going well with you!

Monika - I have not tried prolotherapy, but my mom suggested that I try it even before we hade the EDS DX. She's a pharmacist and, oddly enough, she likes to learn about alternatives to traditions meds. I know your comment was posted awhile ago, but if you get this and you have already tried prolotherapy, let me know how it worked!!

Thomas Bell said...

Hi Thomas Bell.
just wonderin how you accomplished not being treated like some kind of drug addict. was diagnosed with this condition after 30 yrs of suffering an misdiagnosing my conditioned .I was calm told you have this disease or syndrome whatever their calling it an there's nothing we can do for you .except to say it will get progressively worse oh yeah for me .

Jenn said...

Monika- I know that your question is two years old. But I did prolotherapy for several years, and I have SEVERE EDS. I cannot tell if it ever made a difference or not. It MAY have helped a little. I suppose my ribs dislocate like 10% less now, but I suspect it has more to do with me moving to a warmer climate than the prolotherapy. One thing I will tell you, though, is that EVERY time I did prolo, the joints that they put the shots in would ALWAYS dislocate afterwards. So doing 3 or 4 ribs is one thing. But the human body is NOT meant to handle 8 dislocated ribs at once! I did that on one trip, and it's in the top 3 most painful things I have ever experienced. They are completely & fully dislocated, and they stay that way for days. It's not like when you have a few ribs go out but they're partial dislocations. I have a nasty X-ray showing them all over the place. So you have to be careful.