Monday, June 1, 2009

Out with the Old!

List of medications I was taking:

  • 10 mg Midodrine (pro-amazine)- 4xday (40mg total) - for POTS (raises blood pressure)
  • 2.5 mg Florinef (fludrocort)- 2 pills, 2xday (10mg total) - for POTS (helps body retain salt)
  • 150 mg Trileptal (oxcarbazepin)- 2 pills, 2xday (600mg total) - for bipolar
  • 50 mg Elavil (amitriptyline) - 1 pill at bedtime - extra help for the depression (bipolar)
  • 50,ooo iu vitamin D - 1 pill, once every two weeks (for osteopenia, aka low bone-density)
  • 1,500 mg calcium daily (that is 1,500 mg of elemental calcium - most calcium supplements have the calcium content listed, but that doesn't mean it is the elemental calcium content. If there are 600 mg of calcium, but only 200 mg of elemental calcium, you would need to take many more pills to get to the quantity you need) (for osteopenia, AKA low bone-density)
  • Multi-vitamin (vegan)
  • Lots of sodium intake - salt, salt, salt
  • Wear compression stockings
  • Ibuprofin for general pain relief, percocet for severe pain relief, skelaxin for muscle pain

List of medications I have tried in the past (not complete, but for referrence):

  • Celebrex 
  • Cymbalta (30mg, and 60mg)
  • Skelaxin
  • Provigil
  • Ambien
  • Imitrex (shots, pills, nasal spray)
  • Chondroitin
  • Cortisone
  • Enbrel
  • Ibuprofin
  • Lunesta
  • Mobic
  • Naproxen Sodium (Aleve)
  • Naprosyn
  • Percocet
  • Provigil
  • Topical Analgesics
  • Vicodine
  • Zoloft
  • Steroids
  • Valium
  • Ultram
  • Codeine
  • Tylenol
  • Lidocaine
  • Volteran gel
  • Effexor
  • Zoloft
  • Wellbutrin Sr
  • Prozac
  • Buspar
  • Lamictal
  • Zyprexa
  • Strattera
  • Morphine (after surgery, during surgery complications - the only pain reliever I have ever tried that really got rid of all the pain. So brief though, an hour later it was all back. But, I see why people become addicted - the pain relief is THAT good. However, I do not want to be 27 and addicted to morphine!)

Therapies I have tried:

  • Physical therapy (did for years, didn't notice much difference for the most part)
  • Massage therapy (helps, but SO expensive, and doesn't have long lasting results)
  • Water therapy (helps a bit)
  • Light exercise (walking, short bike ride - definitely helps with mobility, but hard to do when in pain)
  • Moderate exercise (long bike rides, light hikes, things at gym, swimming - sometimes these would help, sometimes they were impossible to do)
  • Heavy exercise (10 mile hiking on advanced trails, etc. - did nothing but aggravate all ailments)
  • TENS unit (didn't do enough to notice an effect)
  • Heat/Ice therapy (helps momentarily, rely heavily on this during times of pain)
  • Some relaxation therapies (sleep therapies, sound therapy, briefly dabbled in meditation)
  • Counseling (for bipolar, PTSD, and to help deal with chronic pain)
  • Chiropractic care (more holistic approach; helps some, SO expensive to go as often as doctor recommended, which was 3-4 times a week, forever)
  • Braces on joints (currently use braces most every day, they do help keep joints in place a bit more, which helps with pain)
  • Splints (plastic ring splints, silver ring splints - in process of getting all of my silver ring splints - they are AMAZING. they really do help immensely)

*If you have questions, feel free to post a comment below or email me.


Dion said...

Hi Danielle,
I have EDS type 1, and just the hyper-mobility seems enough. Your journey is far harder. I had dislocating knee caps and had my first knee surgery when I was 15 and second knee when 20. Since then many arthroscopies on both knees ans a triple ankle fusion of right ankle. The first surgeon told me I'd be in a wheelchair at 35, but I'm now 64 and still mobile. However I do take Naprosyn and have done for years. It is now affecting my gut and that's to be investigated. I also have suffered two bouts of severe depression and still take anti depessant meds - called 'Cymbalta' here in Australia. My aim is to stay on my feet (even in a limited way) for at least another 5-6 years so I can enjoy my nearly 5 grandchildren. My EDS was not diagnosed until I had lost 4 babies in my 20's and my son was born 10 weeks early. Even then no-one here knew anything much about the condition in the 1970's. So I plodded along in the dark until I learnt of the EDSF and the superb information they put out. I have Chiropractic treatment once a month, also massage once a month, and do hydrotherapy once a week.These three treatments are partially covered by our excellent health insurance here in Australia. Without that I would be struggling even more. I walk when I can for about 20 mins. I have learnt to be master of the 'Quick Cook' technique, for survival at the end of the day.
I have tried being vegetarian, for 3 yrs, but it just doesn't suit me at all.
I have found, especially as I get older that I just have to take each day as it comes and not make too many complicated plans - to let go and let God.

Adriana said...

Hi Danielle,
I´m making a research about the EDS, because my friend´s child, has recently diagnosed with. He´s been having troubles specially with his right shoulder, and the surgeons want to immobilize the shoulder, he´s only 10 years old, and his mother concern is that he´s growing, and still in development. We appreciate your opinion, based in your experience. The boy is taking only PT, and acetaminophen.
Thank for your help

Vegan Danielle Davis said...

@Dion - you certainly have strength! :) Thank you for sharing your story! I am sorry to hear that it took so long for the diagnosis of EDS, it seems that we all end up in the boat. I am glad that you have found peace with yourself and look at life with the 'one day at a time' approach. That is certainly, in my humble opinion, the best way to conquer each day and is a great tool to stay positive. I am sure there is a link with chronic pain, EDS, and depression, as most people with EDS that I have talked to also struggle with the combo. Keep your chin up. :) Much love and I look forward to your future comments! +

Vegan Danielle Davis said...

@Adriana - I hope your friend's son is doing alright. From my experience, I wouldn't personally recommend immobilizing a shoulder. What I would recommend, would be to do things to build muscle around the shoulder to hold the joint in place, without damaging the shoulder in the process. A PT might be a good one to recommend certain types of exercising. Also, a 'tens-unit' might provide no-impact muscle stimulation. I find that not using my 'trouble' joints to do weight bearing things, and avoiding things that will stress them is also key. But, in my opinion, complete immobilization on someone so young isn't a long-term solution. I hope that helps (from someone who isn't a doctor!). :)

Adriana said...

Thanks, for your answer, We believe all the people with the syndrome are the experts, the doctors always are trying to do their best, but some time is just simple experimentation.
I admired you because, being positive for some one who is in pain is a hard time also. God bless you and all the people with Danlos.

Anonymous said...

Hey I wanted to thank you for your blog. I have EDS and just got silver ring splints, which insurance paid for. I wouldn't have even asked if I hadn't read the information you posted. Thanks for sharing.

Anonymous said...

I hope you don't mind me commenting still, even on an older entry. I was googling a little on others with Ehlers-Danlos Syndrome, I personally have type 3 and I find your blog very interesting. I'm only young (19 in fact) but I went through every drug on the list over the years and ended up on Morphine. While it can trick you into thinking you're cured (so much you go to stop doing therapy and similar, which one mustn't!) its only a mask. My pain management doctor is one of the best in Sydney (Australia), so I've been told, and he got into a bit of a fight with the hospital that diagnosed me with putting me on morphine in the first place. However, the information the hospital gave me to 'scare' me to get off it was false information, according to both my pain specialist and a variety of doctors I saw for an opinion over the matter. 98% of the time, I'm pain free. Being an artist I can't tell you how thankful I am to be able to hold a pencil, let alone draw now painlessly for days on end. I'd thought I'd lost the ability a long time ago. Morphine I've found has become a 'scary word' to doctors, and I'm surprised with all I've encountered, how much false information over it and its 'addiction' is being retold to patience. Addiction is when you crave it, especially when you want more. But if Morphine works for you, once you find the dose that's right for you, you'll stay stable on that dose for years. If the dose, after about 8ish months hasn't reached a stable amount (that you find kills pain, without doping you out too much) then the morphine won't work on you/your pain. Maybe I should research into it more, I know I'm not an expert, but I do know the head of the hospital department that diagnosed me was a 'naturalist' and didn't want me to take any pain medications, or any medications period. She kept going on about how I could never do this, never do that, in life for various things everyone takes for granted. She said to get off morphine for reasons that didn't exist. All she said I couldn't have, I've regained because of this medicine. Morphine's given me, for the past few years, an actual life back. The dose I'm on now is still fairly low, but the sickness it gives me is very low to none now that I've stayed on a stable dose for as long as I have. I just wanted to toss in my story of experience with it, seeing as your post suggested fear against it. I'd recommend it to anyone with the condition (for the hypermobility type/type 3 at the least) because of all the benefits its given me. After years in chronic pain, you can forget how wonderful a pain free day (heck, just a pain free minute) can be. Its definitely a medicine worth truly investigating :]

Anonymous said...

To the person who wrote about morphine, please, if you see this, can you please contact me? I would like to discuss a little about this, i want more info. I´m not planning on using it, but i´m afraid i might need to think about it in a few years since my pain is way too strong. I will do as much as i can to avoid using strong medication, i will for years and years i´m sure but i do not want to suffer in vain if you know what i mean. Knowing that there might be a way for me to recover a bit from this, i´m also an artist and photographer, EDS stole my life.