Saturday, December 4, 2010

Lavender Calm and Tincture Healing

Back when I had bronchitis in September and October, I was feeling pretty ill. Between the normal pain and being very sick, I was in bed for the majority of 7 weeks. I thought it was never going to end. I really didn't want to go to the doctors and have them try to give me antibiotics for a viral infection, nor did I want to waste my money and time. (In November I got on Medicare, but at this time I didn't have coverage.) Instead, I went to my chiropractor, Dr. Jensen, who also practices homeopathy.


I was a little apprehensive about seeing Dr. Jensen for bronchitis, since he was my chiropractor and I had never seen him for anything else, but I was miserable and looking for any relief. I have tried my share of alternative and western medicine for all sorts of ailments, and I was hoping to find something natural for this. He did some muscle tests and confirmed that I had a really bad virus, and he sent me home with some tinctures. I was supposed to take one eyedropper full in the morning and at night until I felt better, and then for an additional four days afterward.

I don't know if I was on my way to being better and I just kicked the bronchial infection myself, or if these drops really did help, but oh my goodness! 5 days later, I was back up and running! I will definitely be visiting Dr. Jensen for any other things I have problems with. He is such a down-to-earth and humble person, with a real head on his shoulders. He opts for natural therapies over western medicine, and his presence is very calming and reassuring. Plus, his form of chiropractic treatment, the ProAdjuster, has been a blessing! I highly recommend seeking alternative treatments, even if it is just to keep additional options open. I was skeptical, I do admit, but I am so happy I went.

To top off the healing, Mom brought in some lavender from the garden and it filled my room with the most wonderful aroma. Peaceful healing.


Friday, December 3, 2010

Oxycontin, Trigger Point Injections, and the Bowels of the Earth

Hope everyone is well and enjoying the start of December!

Last week, I worked on getting a new patient appointment at a different pain management clinic, one where the doctors hopefully have better bedside manners than the one I saw a few weeks ago. Unfortunately, I got the call that I won't be able to get in for 2 months. I was all set to wait it out, until that night when, as usual, the typical nightly pain became so unbearable, the cries of frustration were abounding and I couldn't take it any more. I decided to go back to Dr. Pain again, at least to get me through until I can be seen in the new clinic. If I end up liking him, I may stay with him, but at least I can see someone else for a "second opinion" if need be.

The worst of all of my pain, and the constant, is my "flank" pain. I liken it to laying down on hot coals while simultaneously being branded with a burning metal poke. It is a terribly hot, writhing pain that never goes away, and is only slightly muted by the combo of pain meds, anti-spasmodic meds and a heating pad. The docs have no idea what is causing it. The rest of the pain sort of comes and goes, it is a mix of joint pain, muscle pain and nerve pain in random places.

The first thing Dr. Pain wanted to do (besides tell me again that I didn't act like I had bipolar disorder, like he can "tell" after the 10 total minutes of talking to me), was trigger point injections. I was very excited about this, since this would be the first attempt at easing the flank pain. We had no idea if it would help, but I was up for trying anything. According to the Neurology Channel, "a small needle is inserted into the trigger point and a local anesthetic (e.g., lidocaine, procaine) with or without a corticosteroid is injected. Injection of medication inactivates the trigger point and thus alleviates pain." We chose to do it without steroids, especially since I want to avoid them if possible.

I got a total of about 15 shots in my right flank. The doctor first numbed the skin by wiping a topical anesthetic across it, though I don't think it helped, then injected a bunch of different areas. It was a bit uncomfortable, but not that bad. Dr. Pain said I should feel some relief within 10 minutes, and that it should last between 1 and 4 weeks. Unfortunately, because I bruise easily, he also mentioned that I might be sore for a day or two from internal bruising, and I might not notice the relief until it eases up. Lastly, he put tape over the injection sites. I mention this, because even though it was paper tape, it was awful to peel off. No tape next time! About 30 minutes after the injections, I did notice a bit of relief. The normal pain level in my flank is about and 8, ending up at a 9 by bedtime. As of now, a day later, I am down to the average flank pain being about a 6 or 7. Yay! It does still progress and is pretty bad by bedtime, but any help is welcomed with open arms!

The second thing on the agenda was to start me on new pain meds. Since the Vicodin and Flexeril I am currently taking aren't doing near enough and the Vicodin is really messing with my GI tract, we talked about a new plan. The Fentanyl didn't work as a long-acting, since the side effects were too bad, so now I am trying Oxycontin, 20mg 2xday for the long acting med, and Vicodin 5/500mg as needed for breakthrough pain. I am no longer taking the Flexeril. I went home to see how the Oxycontin would work. 

And, then it started. Pain medicine does not work well with my system, specifically narcotics. The major side effect of taking narcotics is constipation. Well, combine the normal side effect with my ridiculous GI tract, and chronic constipation, and it leaves me in worse shape than the normal pain I deal with. This was the problem with the Fentanyl, it is a giant problem with the Vicodin, and it has proven to be a problem so far with the Oxycontin as well. Since I was a kid, the chronic constipation I deal with has been horrible. I was even in the hospital for it when I was a younger. I have tried natural remedies, diet changes, drugs, and many other things. I always have a problem with it, but I can deal with it most days. Add a narcotic, and I become so constipated and get so much gas (flatulence) built up in my body that I can't function. 

Last night, I buckled in pain. I was crying, sobbing, screaming, and I was in the same boat I was in when I took Fentanyl. The gas pain was so bad that I was literally curled up and shaking, my mom spent the evening stroking my hair and back, wiping my tears and snot. Yep, it was that bad. It is times like this that I am so glad I live with someone who is able to help take care of me.

I have been trying to get through the nausea, headache, drugged feeling, hot flashes and sweating, and make it through this constipation and unreal gas/bloating. I am hoping that it will ease up once I have been on the Oxy for a few days. I'm finding that it is helping the rest of my pain a bit, which is wonderful. I will take it one hour at a time for now, and continue to sit with the heating pad, take the simethicone (anti-gas, over the counter medicine), take the Senekot-S and pray I can get through this. 

Hopefully this is a start! I have also begun yoga to help with back and core strengthening, and I will be doing a post on that soon. Until we talk next, may you have a low-pain night and hopefully you are enjoying yourself wherever you are, whatever you are doing. 


Thursday, December 2, 2010

Left Foot, Right Foot, Feet Feet Feet!

Does anyone get foot twitching and spasms?

For years I have been getting these awful foot spasms that are completely disabling, and I have no idea what to do about them. Sometimes they occur in my arch, sometimes in my toes, and sometimes both; everything balls up all at once and the worst stabbing and shooting pain immediately deadens me wherever I am. I have even sat down in the store and started crying they hurt so bad. The weird thing, the spasms are so intense that my foot becomes entirely contorted, my toes splay out in all directions and hyperextend backward, and the pain and spasms can last around an hour, if not on and off all day. If I immediately wrap my foot in a heating pad and take a pain killer, it makes it easier to get through, but sometimes that doesn't even help.

The leg and foot cramping I get from Restless Leg Syndrome is not the same thing. It doesn't feel the same and this doesn't happen just during the last part of the day like the RLS does.

I have read about deficiencies that can cause spasms and "charlie horses," but I take supplements for calcium, vitamin D and magnesium. My potassium levels range between normal and just a little low, so I continue to eat bananas and drink coconut water. I am not sure if these spasms are caused from EDS or a deficiency, but the doctors don't have any suggestions.

Any ideas?


Wednesday, December 1, 2010

Results from Banjo Trial

For those of you who are new readers, a little over a month ago I started a trial of Dr. Steve's Banjo, a homeopathic treatment for a host of things ranging from fibromyalgia to chronic fatigue, arthritis to chronic pain. I was hoping for a positive outcome, hoping to see some relief for my symptoms, especially the pain. Unfortunately, my results are in and they aren't positive. After working directly with Dr. Steve for over a month without any real results, we have come to the conclusion that if I haven't already started showing improvement, it is unlikely that I will; I have made the decision to stop taking Banjo.

Dr. Steve was helpful, kind, and wonderful to me throughout this process. There has been great success in treating just fibromyalgia or just arthritis, according to Dr. Steve's studies, but my combo of EDS and fibromyalgia didn't have the same results. I am disappointed, since the thought of a homeopathic treatment that would alleviate pain and fatigue sounded so amazing, but alas, this is not my panacea. On to the next big thing!

Lots of love!

Wednesday, November 24, 2010

A Special Thanksgiving Request

Hi, everyone! I want to wish you a happy Thanksgiving and send my love to you and your families! I am raising a toast to a pain-free day filled with warmth and love!

While I am not a fan of the Thanksgiving holiday, I do partake in the family hoopla, food (the cruelty-free kind, of course) and the fun. This post is to honor something I am truly thankful for: the Love is Life Foundation (LIL). The following has nothing to do with Ehlers-Danlos Syndrome, but since the holiday is about coming together to celebrate wonderful things we are thankful for, I am hoping you will give it a second of your time. The organization was founded by my good friend, Steve Rosenfield, with a mission to "improve human well-being and alleviate human suffering globally by initiating charitable projects that support fundamental human needs such as shelter, food, education, clothing, and health care." They are currently working with the women in the West African Country of Sierra Leone who suffer from obstretic fistula.  

In Steve's words, "This is an enormous project that we will be putting our energy into for many years to come as we feel women, not only in our country but other countries, do not get the care and treatment they deserve."

The foundation is in desperate need of funding to launch this project, and it would be a wonderful if you could spare a little change to help get this underway. Of course, LIL is always welcoming donations, but with a deadline of December 15th to raise the needed money to implement a clinic in Sierra Leone, time is of the essence. I know money is tight, especially around the holidays, but even the smallest amount could be mean the a world of difference for a woman in Sierra Leone. All of us EDSers know what it is like to live in pain and to deal with the lack of proper health-care, and if you are able to lend some holiday help, it would be so appreciated by myself, Steve and the LIL team. Donations are accepted via the link below, and the goal is to get a $5 from 1,000 people. If you are unable to help with money, they are accepting donations of frequent flier miles and even travel supplies.

According to the West Africa Fistula Foundation (WAFF), "Vesico vaginal fistula, or VVF, is the most common among obstetric fistulas and is an abnormal communication between the bladder and the vaginal wall, which is approximately 98% caused by obstructed labour. An obstructed labour occurs when the baby's head is unable to pass through the birth canal and is jammed in its maternal pelvis. If this condition is not relieved on time by cesarean section, the anterior vaginal wall and the bladder become compressed between the fetal skull and maternal bony pelvis resulting in pressure necrosis. This gives rise to a defect known as a fistula, through which there is a continuous leaking of urine that cannot be explained, [nor] stopped. Other obstetric fistulas include RVF (recto vaginal fistula), where a hole is between the vagina and rectum, vesico uterine fistula, and ureteric fistula among others."

From LIL's website, "for this amazing project, LIL will be working with Dr. Darius Maggi, MD and the West Africa Fistula Foundation. The WAFF was founded by Dr. Maggi who is also the primary surgeon and benefactor of the clinic facility in Sierra Leone. They are a fabulous organization which has created a comprehensive care plan for all the women the clinic serves. We are honored to be collaborating with them and proud to say the West Africa Fistula Foundation has been well received by the people of Sierra Leone. In 2009, W.A.F.F. received an award as Best NGO in the southern province of Sierra Leone and received a civic award for Charity Organization of the year in Bo from the civic organization there."

If you would like to help, please donate here.
If you didn't want to donate, Meeko and his puppy dog eyes are trying to convince you...
Don't forget to leave a comment below so we can keep track! (Anonymous is fine!)

Thanks so much and happy holidays from Dani, Meeko, Steve and the gang at LIL!

Monday, November 15, 2010

Taken aback!

I was surprised today when my wonderful chiropractor told me to start wearing a back brace, though I am not sure why. Telling me to wear a brace is like telling me to brush my teeth - nothing out of the norm! Ha! I am curious to see if it helps with my back pain; the doc seems to think it might. Fingers crossed!

Do any of you have luck with back braces to ease any of the chronic muscle spasms? What about to help with spine/ribs slipping out of place?

Stiffly wishing you a good night full of rest and peace.

Sunday, November 14, 2010

Miracles, Angels, Beds, Oh My!

If you are like me, you spend a lot of time in bed. For the "normal" person, a third of the day is spent is bed, but add to it days that you aren't feeling well, dislocate something and can't walk, are really fatigued, or have a POTS flare, that adds up to many, many hours spent on a mattress. For years, I was sleeping on a horrible mattress. I kept the bed I had my entire youth for a few years after high school, then I just had whatever mattress was on the cheaper side at the store. This certainly affected me in many ways, from lack of sleep to additional pain. A good bed is essential to getting good rest, and also affects back pain and body pain throughout the day. After years of sleeping on partners' beds, beds that I bought cheap, beds that were 20 years old, I decided it was time to make a big purchase - and I couldn't be happier.

Meeko puts up with a lot! Haha!

I looked around for quite a while, and I was overwhelmed by the choices on the market. I had narrowed my selection down to a memory foam mattress or a Sleep Number mattress, but was having a hard time choosing which one. In the end, I decided the memory foam would be the best for my body. I have problems with pressure on joints while I sleep, and I also tend to dislocate things while I am sleeping. I wanted a bed that would take some of the pressure off of my body - something that felt like I was sleeping on a cloud - and I was really hoping the perfect mattress might ease some of the back pain I experience. So, memory foam it was; but, which memory foam??

There are a ton of memory foam beds on the market. Costco sells memory foam mattresses for really cheap, Tempurpedic seems to make the "best" ones on the market, and there were a ton of mattresses in between. I tried a bunch and tried to compare them all, but it was hard not being able to sleep on them to really form an opinion.

I stayed with my brother one night, and he has a knock-off cheap version of the Tempurpedic at his place. It was pretty inexpensive for memory foam, and it was also a pretty firm memory foam. I have never hurt worse from a mattress, not even when sleeping on a 20-year-old one. It took "forever" to "sink" into the bed. Every time I rolled over, I would be laying on a new part of the bed. The mattress would have to warm up with my body temperature and then the bed would give way and mold to my body just a hair. An entire night of laying on rock hard bed until each spot would warm up, then allow my leg or arm or hip to sink in, this left my joints aching terribly. My knees were slipping out all night long. (This is rather hard to explain, but hopefully you get the point = BAD bed.) I found this to be the case with most of the knock-off beds, especially the stiffer ones.

At this point, I felt like Tempurpedic was my only option, and one of the softer ones. The problem, the higher end Tempurpedics were VERY expensive. I was willing to take the good amount I had saved to get a mattress, but these were just out of my price range. Then, I remembered a friend-of-a-friend who had told me about a knock-off version of the mattress that was just as good, if not better, than the real deal. He was head-over-heels for his mattress. The good thing, these beds were a lot more inexpensive. This is when I checked out Angel Beds. I was hooked. The info on the site seemed great, and the customer service staff at the phone number were friendly and helpful. I finally had decided on a mattress, the Angel Bed Sky Supreme-ES, which was supposed to be identical to the Tempurpedic Cloud (the Tempurpedic I fell in love with once I tried it in the store).

I was a bit nervous ordering a bed online. I was even more nervous that I couldn't try the bed ahead of time. They have a 90-day risk-free trial though, and they mean it - sleep on the bed and if you don't like it, send it back. Easy at that. I felt a bit more comfortable knowing that I wasn't completely locked in if the bed turned out to be as horrible as my brother's. They also run a ton of sales, and they often offer free shipping, a hundred or two off the beds, and no tax on the sale. I happened to get in on one of those deals, and my bed was on the way.

Bed arrived, unpacked, and I was...floating on a cloud!! Seriously! This bed was, and is, a dream come true. I still have problems sleeping, and I still have aches and pains, but this bed has truly made a difference in my life. I can sleep for longer periods of time without hurting, my dog can roll over and walk around and it doesn't wake me up, the beds absorbs the movement and I don't feel it. I have less back pain after sleeping, and it was really noticeable when I first got the bed. Yes, my back pain is still bad, unbearable at times, but I really feel like this mattress did make a difference. And, I feel like it puts NO pressure on my joints when I sleep, no matter if I am on my side, back or tummy. I do get enough support, but also enough softness to not feel that "pressure" pain I often do while laying on a bed or couch. 

I am in love with my mattress. A friend bought one after my recommendation and also loves it. He is just as happy as I am. He doesn't have EDS, but lots of us share the bed at night, and it is good to know that our partners or spouses might equally love the bed as well. There is a referral program, so if you do end up choosing to get an Angel Bed, if you use my referral (just contact me via email), you get $50 off the bed, and after the trial, if you keep the bed, I get $50. Cool! That, however, is not why I am recommending the bed. I am not a paid spokesperson, ha! I am not trying to get them customers, although I would definitely send anyone their way. I am just a gal with EDS that has finally found a bed that I am happy - ecstatic - with, and I am excited to share it with anyone else in the market for a mattress.

Here's to happy sleeping!!

Visit the: Angel Beds website


Saturday, November 13, 2010

Hot Dog!

I got up from the bed for a moment and left the heating pad on. Looks like Meeko stole my spot! Ha! Oh, how I love my baby!


Friday, November 12, 2010

First Aid for the Car

Out at the store and shoulder starts bothering me? Ankle gets swollen? Decide to spend a few hours in the sun? It's okay, if I have my first aid kit handy. I have everything I need in one place, and it follows me wherever I go. I wanted to share something I have found very helpful - keeping important EDS & POTS items handy in a "car kit".

My kit is sorted into a handy bag, so if someone else is driving, I just grab it and take it with me. It is small enough to fit on the floor in the backseat, complete enough to have heat, cold, and all of my meds, and helpful enough to give me a quick fix to get my blood sugar up if need be.

I found the perfect bag by Lily Bloom that is made from recycled soda bottles; though, I think it is actually intended to be a lunch sack. I love the large top pouch which fits heat patches and sunscreen, and the bottom zippered part holds the typical first aid gear. You may find that you want to add additional items to yours, or that my list is way too detailed for you, but check out my contents and have fun making a car kit of your own. Hope this helps keep you organized and in less pain while you are on the go!

  1. ACE Bandage
  2. Bandages (latex-free; I like the "gentle" ones!)
  3. Hand Sanitizer
  4. Gas-X
  5. Ibuprofen/Acetaminophen
  6. Antihistamine (like Benadryl)
  7. Wound cleaner 
  8. Butterfly stitches (for those whose skin rips open easily)
  9. Paper tape (I like the kind that is on a tape dispenser)
  10. "Vet" tape/Cohesive wraps
  11. Gauze
  12. Heat therapy patches
  13. Instant cold/ice packs
  14. Pen & paper
  15. Mirror
  16. Chapstick with SPF
  17. Extra meds (like POTS meds, pain meds, bipolar meds, etc.)
  18. Tampons/pads
  19. Pocket knife/scissor/tweezers or combo tool
  20. Sunscreen (change out every 6 months to maintain SPF ratings)
  21. Tissues
  22. Nail clippers
  23. Granola bars
  24. Pretzels or something salty (if you have POTS)
  25. Fruit snacks (or something to raise blood sugar)
  26. Small bottle of water (sealed well)
  27. Anything else you might need!

Yes - you can be more organized than me and keep everything in a separate bag/baggie/container, but this seems to do the trick for me! I always just make sure to bring it with me wherever I go, and if I use something, I replace it right away. Happy and safe travels!

Have a great weekend, everyone!


Thursday, November 11, 2010

Fentanyl's a No-Go

Good morning!

After starting the Fentanyl patch in the early afternoon yesterday, I actually started to feel some relief around dinner time. My pain was not as bad as it usually is - hooray! But, I was feeling a bit "drugged," and I don't like that feeling. By bed time, I was feeling very dizzy and had an awful stomach ache with gas, bloating, and cramping. I couldn't sleep at all during the night, and woke up exhausted. This morning, I made it three hours before I ripped the patch off! Spinning, the most awful headache ever, and horrible IBS symptoms have left me no choice. There is no way I could live like this daily. To top it off, I was shaking like crazy - it was like I was having horrid withdrawal symptoms of some sort. No thanks! I have six more hours of these feelings, since the medicine continues to work for six hours after the patch has been removed. Time for a call to the doctor (and searching for a new one when I feel well)...and I will not be taking Fentanyl again.

Also - if you have adhesive allergies, I do NOT recommend these patches unless you crave red, itchy, very irritated skin.

I hope YOU are having a much better day than I; happy Thursday my lovelies. :) I am hoping to make mine better with some rest and some sunshine...

Here is some beautiful cheer for us all - photos I snapped the other day...

"Autumn is a second spring where every leaf is a flower." 
~ Albert Camus


Wednesday, November 10, 2010

Pain Doctor Causes More Pain

Well...not physical pain...more like stress and frustration. Yep, that was my experience today at my first-ever physiatrist (pain management doctor) appointment. November 1st marked the day one of my Medicare coverage/Medicare Advantage Plan, and so for the first time in a couple of years, I have been able to start going to the doctors again - including specialists like physiatrists! So much for great expectations; it is sometimes hard to maintain realistic goals when looking for an end to pain, and I suppose I put a bunch of my hopes into this appointment and that is what failed me in the end. On the other hand, keeping hope is something we all know is very important, since this is what pulls us through the rough patches, big and small.

Quick note: I owe you all updates on the Banjo, among other things, and I have been slacking on returning emails as of late - I have been dealing with too much pain to put a lot of focus into these the last couple of months. I hope you all accept my apologies and know that I will be updating as I am able.

I spent hours last night prepping for today's appointment with "Dr. Pain." I went into this excited, but I wasn't looking for a miracle. Really, I was looking for an improvement in my daily life, even something small, since I wonder at times how much more pain I can take. I gathered up a pile of medical records, ran to Kinko's even though I was hurting terribly last night, and made copies of everything I thought would be pertinent to my pain management plan. I then scoured through the pages of notes from the EDNF conference and typed up all sorts of tips and treatments I had learned about, including notes and credentials on each of the wonderful people that spoke and key points from their lectures. I highlighted random sections to reference while talking to the Pain Doc. Lastly, I included a few pamphlets on EDS from EDNF. I wanted to be ready for any questions he might have, and since this pain clinic offers many forms of treatment, I wanted to be sure to research all of them beforehand so I had an idea of the things we might discuss. The notes were mostly for myself, but they were important points to talk about with Dr. Pain, and also what I thought would be important notes for him to have.

When I arrived at the pain clinic today, I was greeted with a smile by the receptionist, filled out a form with Xs and Os and triangles marking where my current pain was, and joined the rest of the patients in the waiting room. An hour later, I was finally led back to my room by the nurse, who coincidentally shared my name and commented that I didn't have the worst medical history she had ever seen, but I certainly did not have the best. She comforted me with her smile though, and I was still amped  to meet the doctor.

A short while later, Dr. Pain entered the room. He seemed nice, gave me a hand-shake and mentioned how "great" I looked. He quickly looked over my chart and noted how young I was and then "got down to business."

The next words out of his mouth, "Ehlers-Danlos shouldn't cause pain."

Well, yes, he technically is right. According to Dr. Francomano, "EDS predisposes [a person] to certain kinds of pain, but DOES NOT cause pain itself." However; the former part of the sentence certainly holds true...and PAIN is involved. Of course, Dr. Pain probably isn't really familiar with EDS, and so I kindly tried to explain to him what I have learned about EDS, what I personally deal with, and why my doctors have sent me to a pain management clinic. I handed him some pamphlets and told him I was really glad to be in his clinic and how I was hoping he might be able to help me out with the pain I live with.

The three important words from that first encounter: "tried to explain."

Dr. Pain wanted nothing to do with my explanations, my personal struggles, my life with Ehlers-Danlos Syndrome. Dr. Pain grabbed the EDNF pamphet, browsed it for a split second, then tossed it on the table. He wouldn't take any other pamphlet/papers. He wouldn't look at any of my notes or highlighted questions, even though I asked him to. He grabbed a chair across the room, sat without making eye contact and told me that he didn't think there was much he could do for me.

He asked me why I didn't complete college, and didn't acknowledge my response. He then, very condescendingly commented on the fact that I have been on disability for a while then alluded to the fact that didn't think I should be on it. (All of this, while he doesn't have any idea what my life is like on a daily basis, no idea about POTS or what it is, and no concept of the problems I have physically.) He asked why I was told I have bipolar disorder and then commented that I "seem fine." It was almost as if he didn't believe me when I talked about my bipolar disorder and PTSD, then he just got quiet at the mere mention of childhood abuse. He then profusely apologized for said abuse, but continued to question why I wasn't "acting like I had bipolar disorder." When I explained that I have been in treatment for an entire year this go-round , and that I am happily stable on my medication (trust me, there have been times where I have been very unstable) and therefor more ready than ever to start working on the physical side of things, he brushed it off like I hadn't even spoken a word. He then told me that I must stay in psychiatric treatment. (What?! I told him I was happily in treatment - wasn't he just the one questioning my bipolar disorder in the first place?)

While remaining cordial through the whole visit, Dr. Pain was almost ambivalent toward my pain and symptoms. One minute he was mentioning the medicine he wants me try, the next he was telling me that he is concerned I will become addicted to pain meds and that he doesn't like the idea of putting me on narcotics (though I am already currently taking them), and that my bipolar disorder makes it more likely. I mentioned to him that EDS patients often struggle with this, but treating the pain is important and my psychiatrist even has agreed that I have more depression due to the pain. Crying every night from back pain definitely has an effect on my mood. I also attempted to tell him that I don't like taking narcotics, or drugs of any kind, and am trying alternative treatments too, but I really don't know what to do because I hurt so badly. If we found something less potent, I am certainly open to anything. I didn't come to the pain clinic for drugs. I came to ask about drugs, trigger point therapy, prolotherapy, needling, etc. Of course, I couldn't get a word in edgewise about any of this.

The next words he utters are about the fact that I look great, got dressed this morning and did my hair and must not be in much pain (quite the contrary!), and then tells me he is putting me on Fentanyl patches and wants me back for trigger point injections, and for break-through pain from things like subluxations and dislocations I am to take an inbuprofen (Really? An ibuprofen??). First, every patient in the waiting room got up, got dressed, and did their hair - I looked all around me while sitting for an hour and not one person was in their pajamas. Second - Fentanyl patches?! This from someone who doesn't think EDS patients deal with pain.

I, again, got out the stack of papers I had brought and asked him to look through the notes from two of my favorite doctors - my geneticist from Johns Hopkins, Dr. Levy and a hero in the crusade for EDS treatment and research, Dr. Brad Tinkle. During the conference, Dr. Levy had mentioned the idea of treating EDS with a "cocktail" of things to control muskuloskeletal pain, muscle spasms, depression, sleep problems, etc. Dr. Brad talked about this as well, and mentioned great ideas for drug therapy, but also integrative therapies, the importance of staying active, and a few other very important facets of treatment. My ONLY desire for this appointment with Dr. Pain was to discuss some of these options, with the focus being mostly on the drug end of things since this was a Pain Clinic, and to hear his thoughts. I never got the chance.

Dr. Pain walked out of the room to end our session while I was mid-sentence. I managed to get him back in the room to answer a question about Prolotherapy, but that was it. I never even got to mention Dr. Brad or Dr. Levy's great information. I left with every paper and pamphlet I came into the clinic with, plus a urine cup to drop off on the way out for drug testing, and a prescription for Fentanyl patches. Dr. Pain was in the room for no more than 5 or 10 minutes.

So, my 10 recommendations for visiting a pain clinic:

  1. Do not get up, get dressed or do your hair.
  2. Do not "look good." (What does that even mean?)
  3. Do not have bipolar disorder.
  4. Forget having the doctor talk with you about YOUR concerns.
  5. Don't smile. It makes them think you aren't in pain. It doesn't matter if you try to be a cheery person in public. This will only count against you.
  6. Do not plan to discuss cocktails. Even the non-alcoholic kind. 
  7. Do not think of mentioning Dr. Brad or Dr. Levy.
  8. Ask for Fentanyl patches when you "look good." Apparently you will get a prescription.
  9. If you come in with notes and are prepared, the doctors will call you "smart." Until today I didn't know, but smart people don't have pain.
  10. Bring tissues and good music in your car. You will need the tissues for the great cry you have when you leave the pain clinic. You will then need the music to cheer you up.

Ha! Of course, this isn't news to any of us. I think most EDSers, me included, have struggled for years with doctors that don't listen and those who ignore most everything we have to say. It certainly is frustrating when you see a light at the end of the tunnel, and find out that it was just your imagination. The thing we have to remember, we are always our own advocate. We have to take responsibility for our health care, and there isn't one solid answer on how to do things. We can pick and choose as we learn, and hopefully there really is a light at the end of the pain just might be a little further down than we planned.

I am really troubled as to whether or not these Fentanyl patches are the next best move. One problem with me and pain meds are the horrible side effects. The chronic constipation caused by pain meds has landed me in the doctor's more than once, and I have been on a mission to find something that actually works without causing me any more pain than I already deal with. These patches might cause less constipation, but no telling for sure. I am really looking forward to the trigger point injections, but I am leery of this path for the drugs. I have decided to start them just to see if they allow me any relief, because I really am at my boiling point by the end of the night, every single night. I have started on a low dose, a 25 mg/hr patch. Each patch lasts 3 days, and it is the equivalent of taking 5 or 6 5/500mg Vicodin a day, which is about what I am at right now. I am on a two week trial of this drug, and I will do more research between now and then, as well as see how my body responds to it. And, yes, the adhesive on the patch has already caused irritation and redness and is itching like crazy. I have to talk to my PCP about whether or not to continue the Flexeril, since Dr. Pain walked out of the room before I could ask. I am still working to find standard and alternative treatments, and am going to be searching for a new pain management team as well. I will go back to this clinic for the time being, as Reno is small and there aren't a ton of options, but I am not one to stick with a doctor that I don't like. For now, Dr. Pain it is. And, who knows, maybe he may help take the pain away.


Saturday, October 16, 2010

Dr. Steve's Banjo (Homepathic Pain Relief)

Hi, everyone! Pardon the delay in posts and replies, I have had bronchitis for four weeks now and haven't had the energy to keep up with the blog. I am feeling a wee bit better today, so I figured I would get a post in while I am able to do something other than sleep!

A week ago, I started a two month trial of a new alternative treatment for pain, fatigue, and inflammation. Dr. Steve's "Banjo" is a unique mix of herbs that's supposed to help alleviate the symptoms of fibromyalgia, joint pain, and migraines among other things. It comes in lozenge form and tastes sort of like a spicy ginger tea. Dr. Steve has a great website that not only covers fibromyalgia, but also discusses the relationship between fybromyalgia and EDS, and his opinion that a person can have both illnesses simultaneously - that fibromyalgia is not a "symptom" of EDS.

I am very excited to see the outcome of my trial, and of course would be very happy if this relieved even some of the pain and fatigue I deal with everyday. I will post how it goes! And, nope, I am not receiving compensation from Dr. Steve/Banjo. :)


Tuesday, September 21, 2010

Happy International Day of Peace!

Happy international day of peace!! Go small, big or both! Practice some random acts of kindness today! Small ideas: pay for the person-behind-you's coffee, help someone put groceries in their car, buy a potted plant for a stranger, give a homeless person a meal or even a bag of groceries. Pay it forward: it will create a beautiful chain of events. :) Spread love and peace today and always. :) I love you all!!

U.N. International Day of Peace Information

xo dani

Thursday, September 9, 2010

FDA Reconsiders Pulling Midodrine (ProAmatine)!!

Woohoo! This is wonderful news for POTSies!  The FDA is reconsidering the midodrine recall, and we now need the drug company to follow suit, since they were planning on pulling the drug anyway. I would like to thank Lauren from Where Did I Get This Lemon? for her post on Midodrine (ProAmatine):

"According to The New York Times, the FDA has reconsidered its decision to remove midodrine (ProAmatine) from the market due to the many complaints received by POTS patients like us that find it necessary for everyday living. The FDA has backtracked from it's original decision, and will now allow midodrine to continue to be sold.(YAY!) Finally, the chronically ill are listened to by a government agency…that must be some kind of record! Good news all around.

Please see the link below for the full article from The New York Times.

F.D.A. Backtracks and Returns Drug to Market"


Thursday, September 2, 2010

Perez Hilton Blogs About EDS!

A couple of months ago, I wrote an email to Perez Hilton, the celebrity blogging gossip queen. I was hoping to convince him to do a post on EDS, since his readership has been reported around 280 million a month, with 13.5 million being unique readers. I figured this would be an amazing way to spread the word. Perez also has a soft spot for animal rights, so I knew we had a few things in common to start a conversation. I never heard back from him or his helpers, so I figured he wasn't interested. I don't know if someone else convinced him, or if I had a hand in this, but either way...we just got an EDS blog post on a site with almost 300 million readers!! Oh my goodness! This is fabulous news for EDS awareness! I hope this helps shed more light on our genetic illness and also helps us raise money for our EDS treatments. I raise my cup of tea to Perez!


The following post appeared on Perez Hilton's Blog:

"CLICK HERE to read up on and donate to a very worthwhile cause!"

"Thank you to our EDS Network CARES families & our EDS families from Canada which are also part of EDS Network CARES foundation.

We are finally able to get some positive and hopeful EDS research going. The last time EDS research was done, was back in 2004-2005. That's not good enough. This research needs to continue throughout the years to come. Research is an on going project and if we want to see progress continue for Ehlers-Danlos Syndrome we need to continue to support research by doing the same as we have been doing! Raising Money and doing Fundraisers!

Without your donations we wouldn't have this first time EDS hope. This has been a long time coming for all our EDS Families."

Tuesday, August 31, 2010

Midodrine Being Pulled Off the Market!

I am sure a lot of you POTSies have already heard the buzz, but for those of you who haven't, the medicine used to help a lot of people treat POTS and other low-blood pressure illnesses is being pulled off the market. Yep, you read that correctly. No more Pro-Amatine (Midodrine). This comes as a shock to those of us who rely heavily on this drug to get us through the day so we aren't dizzy, tachycardic, or even passing out. Unfortunately, not only did the FDA decide to pull the drug, but I just read that Shire was planning on pulling the drug long before the FDA's announcements went public.


"Philadelphia-based Shire, the pharmaceutical company, has voluntarily removed its orthostatic hypertension drug Midodrine, just after the FDA announced it’s intention to withdraw it’s approval for the drug.

Last November, Shire spoke to the FDA and told them they would be pulling the plug on the drug rather than conduct post-market studies, which were requested by the FDA.
ProAmatine is what the drug is sold to consumers as, will be withdrawn from shelves, effective on the 30th of September, according to a statement released on the company’s website.

The drugs efficacy was never proved to the FDA from post-marketing studies, and there was no evidence available to show that the drug was working. This is the reason why the FDA was withdrawing it’s approval.

This is the first time marketing approval has been reversed since the FDA’s fast track system was put in place.

What happens during the fast track process, is the drug is released on to the market, and studies are done while the drug is being used by patients and suffers, called post-market studies. These are hoped to show the quality and effectiveness of the drug while available to the general population. A decision is then made based on these studies as to whether or not the drug will be allowed to keep it’s approval or will be withdrawn. This fast tracks the process of getting much needed drugs and pharmaceuticals into wide spread use, to ease the pain of suffers."

And, the latest info I read stating Shire planned on pulling the drug, from heartwire:

"Philadelphia, PA - A drugmaker whose hypotension drug was the subject of an FDA drug withdrawal request earlier this week now says it had already intended to voluntarily withdraw the drug, long before the FDA went public with the proposal. In a statement, Shire says that the company notified the FDA and healthcare professionals in November 2009 with the news that the company was opting to withdraw midodrine hydrochloride [ProAmatine], used in the treatment of low blood pressure.

As reported by heartwire, the FDA recommended withdrawal of the drug August 16, noting that the necessary postmarketing studies required to show the drug to be effective have not been done, despite the product being approved in 1996.

But in a statement on its website, Shire states that it acquired the drug "as a part of the acquisition of Roberts Pharma in 1999, and Shire conducted and completed the postmarketing trials that the FDA required. The FDA, however, viewed these trials as inconclusive and required that additional trials be conducted for ProAmatine to maintain its marketing authorization."

Shire says its plan to withdraw midodrine was to go into effect September 30, 2010. The decision is not being driven by any safety concerns, the company added.

As previously reported by heartwire, makers of generic versions of the drug have 30 days (from the date of the FDA's first withdrawal proposal) to submit written comments. A final decision about whether or not to withdraw the drug would be made after any final submissions from drug makers and others are considered."

I have been waiting, trying patiently to make it through until November when I am on Medicare to get back on the Midodrine...and now, that isn't going to happen. Like those of you with POTS who find relief with this drug, I am sure you are feeling the same way I am. I honestly don't know what road I will go down now. It wasn't a cure all, but it certainly helped. I will take any little bit I can get. Now, with the only medicine of its kind on the market being taken away, what are we going to do?

Once the Medicare kicks in, I will be trying saline IVs and going from there. I wish you all the best of luck with a new treatment plan, as well.


Saturday, August 28, 2010

Genetic Illness Awareness Award for My Life with EDS!

What's a fantastic way to come back from a long posting break? How about an award?!

My Life with Ehlers-Danlos Syndrome was just awarded as a "leader in the Ehlers-Danlos Community" by the wonderful organization AccessDNA. I am absolutely honored to be the recipient of this distinguished award, which recognizes individuals and websites that "help increase awareness of both rare and common genetic disorders by creating accessible and reliable information on genetic conditions."

I would like to thank AccessDNA for providing information on Ehlers-Danlos Syndrome on their website, for their interest in obtaining first-hand information from those of us who actually live with this genetic disorder, and for recognizing community leaders who are helping to increase much needed awareness for EDS, as well as for many other genetic illnesses.

Thank you, AccessDNA!


Friday, August 27, 2010

EDS Learning Conference 2010

Hi, friends!

It has been a while, thanks for your patience with my delay in posts! Summer months are especially difficult for POTS, the back pain I typically experience has gotten exponentially worse, and the general 'bad days' are abound;  though, I have had my fair share of summer fun keeping me occupied, as well! And, I am sure you can relate: when I have a good day (or even some good hours) after a stretch of bad, the last thing I want to do is sit in front of the computer and type! On to the excitement...

Meeting the wonderful Dr. Brad!!

In July, I had the pleasure of attending the Ehlers Danlos National Foundation's EDS Learning Conference! This wouldn't have been possible without the kindness and generosity of some amazing friends and family who donated and allowed me this opportunity! I am so grateful for each and every one of them. (Thank you!!!) It was truly one of the most amazing experiences; there is nothing like a room full of 500 people that understand exactly what I deal with! It was a very validating and surreal weekend. I met many amazing EDSers and POTSies, met some of the most incredible researchers, doctors and therapists who are continuously working hard to increase EDS awareness, treatment options and research, and attended many lectures and presentations on a variety of topics which provided much needed information.

The weekend started off with a welcome reception, was followed by two days of lectures, and wrapped up with a wonderful banquet. It was held at the Renaissance Harborplace Hotel in downtown Balitmore, MD, which provided a lovely backdrop and great things to do around the hotel. Admittedly, I only got out for an hour before the conference to check out the area, and the rest of the weekend's downtown was spent relaxing and recovering in my hotel room, but the hotel was very nice and I think we all really enjoyed ourselves! I learned more than I thought possible and look at this conference as life-changing, eye-opening, and hope inspiring!

Inner Harbor, Baltimore, MD

I will surely be referencing the conference more in upcoming posts, but I wanted to dedicate this post to information I gathered while there. I decided to make an outline from the notes I took at each lecture, and hopefully they will make sense as you go through them. The notes are grouped together by presenter, and if you have questions about the content, please post them below so I am able to respond. It was very difficult to compile this all so it is understandable by each reader, but I think it makes sense! I hope you find this to be of benefit, especially for those of you unable to attend the conference.

Finally met my friend, Christa, face-to-face!

Much love to all of you! May this find you high in spirit and low in pain!


Ehlers-Danlos Learning Conference 2010, Baltimore, MD (EDNF)

EDS: What’s in a Name?
Lecture by Dr. Brad Tinkle

-Night-time leg pain in children
-Chronic knee, hip, and joint pain
-Comorbidity: Fibromyalgia and Depression
-Disability in adulthood
-Older adults are less hypermobile
-Aortic Aneurysm:
-Vascular problems (this is not the vascular type of EDS, rather vascular complications for HEDS):
-Risk of rupture: Don’t know long-term rates
-Don’t know extended risk
-Vericose veins

-A major vascular complication of EDS

Comprehensive Pain Management
Lecture by Dr. Francomano

      -“Pain is whatever the person having it says it is.”
-Highly subjective, often leading to undertreatment
-May not be proportionate to the amount of tissue injury

2 types of pain:
-Nociceptive pain: in response to tissue damage. Usually, when damaged tissue heals, the pain resides.
-Neuroceptive pain: frequently chronic and less responsive to treatment.
-Poorly controlled acute pain can expose/predispose patients to debilitating chronic pain syndromes.

Headaches w/EDS of all Sorts:
-Low pressure (weather)
-High pressure
-Myofascial pain headaches (muscle spasmsa)
-Sinus pain
-TMJ problems
-Dental pain

Musculoskeletal Pain:
-Joint laxity
-Muscle spasms
-Myofascial trigger points
-Nerve Impingement

GI Pain:
-Sphincter of ODI dysfunction

      How to Reduce Pain:

Musculoskeletal pain:
-Employ Myofascial Trigger Point Release
-Injection of lidocain
-Dry Needling (medical)
-Reduce muscle spasm via Physical Therapy (PT) techniques to reduce spasms
-This type of PT is Passive Therapy
-Can also try ActiPatch
-Physical therapy to tone and strengthen
-This type of PT is Active Therapy
-Warm water therapy is most helpful
-Core strengthening
-Alexander Technique
-Magnesium therapy
-Very important!
-Magnesium is used to reduce muscle spasms
-The body depletes magnesium to keep heart rate stable
-Too much oral magnesium can disturb GI
-Well absorbed through skin
-Can try Epsom salts (add 2 cups to warm bath or foot bath)
-Pharmacological Therapy, Drugs, Including muscle relaxants
-Vitamin D – very important
-Sleep (drug and non-drug)
-WHO (World Health Organization) Therapy:
-Adjuvants – Integrative
-Try Diclofenac lotion
-Drugs like Tramadol/Ultram
-Staying active
-20-30 minutes daily
-Moderate intensity
-5 days/week
-Integrative medical approaches
-Mindfulness-based mind and body meditation
-Relaxation techniques
-Autogenic techniques
-Analgesia triggers same response as Opiod involvement
-Other new approaches
-Aromatherapy for headaches
-Inhalation or topical
-Neurosurgical Approaches
-Disc disease does occur early in EDSers
-Disectomy may help pain
-Fusion to stabilize spine
-Craniocervial Settling/Instability Surgery
-**Beware of post-surgical pain management

-“Pain is a more terrible lord of mankind than death itself.” –Albert Schweitzer
-EDS predisposes to certain kinds of pain, but DOES NOT cause pain itself.

Dani and Comedian and EDSer Dustin Wood

Myofascial Pain and Dysfunction
Lecture by Dr. Jay Shah

Dr. Shah is a former chronic pain patient himself.

-Works at the NIH Clinical Research Center in Bethesda, MD

-Most chronic pain is not neuropathical, it’s musculoskeletal.
-Nociception (the firing of nerves [electro-mechanical event]) vs. Pain (subjective)
-Acute pain = kid skins knee
-Physiological pain = Eudynia= “ouch pain” = good pain
-Pain remits as tissue heals
-Chronic pain = clinical maldynia = a disease in and of itself
-Pain is not serving any useful purpose anymore
-The tissues have all healed
-Hallmark of sensitization
-Lowering of thresholds
-Tissue texture changes
-Widening of receptive pain field

Living with EDS
Lecture by Linda Neumann-Potash

Tips for living with EDS:

-Keep positive self-image
-Make sure to exercise
-Don’t use distance as an excuse – you can have a partner far away to be accountable to, like an exercise partner.
-Ask for help if you need it; utilize your networks.
-Help others by being a good friend, listening/talking with them, etc.
-Make sure to tell friends/family/community what’s going on, how to help you, etc.
-Prevent injury. Ex: Use of a wheelchair might not only be for after an injury, but used to prevent injury.
-Work around your nutritional needs; be sure to try new things.
-Medications aren’t the primary things that are going to help you – the most important is your head.
-Sleep management

Chronic Pain and Sensitization
Lecture by Dr. Shah

Pain is essential to differentiate good stimuli from bad.

Chronic pain = non-painful sensations recognized as painful.

Chronic pain is neuromusculoskeletal:
-Area of skin supplied with afferent nerve fibers by a single posterior spinal root.
-Myotomes ---patients have pain in these, too, not just in dermatomes
-A group of muscles innervated from a single spinal segment.
-Sclerotomes ---patients have pain in these, too, not just in dermatomes
-One of the bony, cartilaginous, or membranous partitions which separate the myotomes.

-A great treatment option is the Acumed TENS US Unit for electrical stimulation (not the same as a standard TENS unit).
-Pain management doctor – best bet is to find osteopathic physicians that do pain management.
-Look for osteopath that is also a physiatrist.

Curing Chronic Pain with Prolotherapy **Controversial in EDS treatment**
Lecture by Dr. Scott R. Greenberg

Chronic pain is the #1 reason for disability in the U.S.

“A joint is only as strong as its weakest ligament.” –George S. Hackett, M.D.

Hipocrates – thought to be the 1st person/doctor to use prolotherapy (created by scarring tissue via hot pokers).

-A series of injections that stimulate the immune system to cause the PROLIFERATION of new ligament, tendon, and joint tissue.

-Importance of Tendons and Ligaments:
-Provide joint strength
-Provide joint flexibility
-Provide basis of range of motion
-Relay info to the body about a joint’s position
-Send signals to the brain regarding joint damage in the form of pain
-Refer pain in a similar fashion as a nerve

-Ligaments and tendons will usually not heal on their own when they are more than 6 weeks old.

-Prolotherapy is not usually covered by medical insurance.

-Prolotherapy is a long-term cure.
*according to this doctor*

-Prolotherapy – joints heal/regenerate better than the joints one is born with.

PRP (Platelet Rich Plasma):
-Different than prolotherapy
-Only used on worst joints because it is expensive
-Concentration of platelets, growth factor and plasma made from your own blood.
-Works faster than Prolotherapy but causes more pain and inflammation, soreness, and is pricey.

-Can find some doctors that don’t do these under ultrasound, so less radiation exposure.

-Can use both Prolo and PRP:
-Usually can inject PRP in joint and Prolo around joint.

-Wide range of treatment times:
-Some people require just a few sessions, other require 1+ years of treatment.

Unique Perspectives in EDS
Presentation by Sara E. Strecker, M.S.

Great research website to check out:
Click on the “free full text” link, don’t pay for anything
Go to the article you want to read; click on one of the two links on the right-side of the page to pull it up.

“Don’t let the disorder define what I can do.”

-Standing up = not enough blood to the brain = body goes into SHOCK.
-Coming out of shock = adrenaline rush.
-Heart rate goes up. Anxiety.

-Notes about blood pressure readings:
-The difference between the systolic pressure (top number) and the diastolic pressure (bottom number) should be around 40.
< 20 = BAD!

-Trick: Weekly infusions of saline trick the body into thinking it has more blood in it. This can be very helpful! Go to an endocrinologist to do this.

Management of EDS: From Joints to GI and More:
Lecture by Dr. Howard Levy

How the EDS body works:

Laxity --> Frequent Minor Subluxations <--> Reflective Muscle Spasm

Reflective Muscle Spasm --> Osteoarthritis
//                           \\            //
Pain                        Fatigue

Tone and Strength are NOT the same thing:
Strength = NOT GOOD for EDS = voluntary source of power
Can sublux joints
Tone = Important and GOOD = how tight muscles are at rest, without thinking about it.
Can support joints

Resistance is USELESS:
-Use CAUTION with:
-Elastic bands
*Be very careful how much resistance

Toning Exercise:
-PATIENCE is key, it takes time to show results. Don’t overdue it; yes it is frustrating.
-Low or non-resistance exercise
-Walking, Eliptical, Swimming
-Bicycling, Water exercise
-Targeted exercise
-Building repetitions, duration, frequency
-Start slow, go slow
-Long horizon – months to stop getting worse, years to start getting better.

Treating Joint Instability:
-External bracing when needed
-Short term
-Temporary thing to use if joint is too unstable to use
-Use while toning, if need be
-If can’t do toning, use a brace
 -Joint stability surgery ???
-Increased rate of immediate and short term failure
-Surgery is a way of buying a few months/years to temporarily stable a joint, in order to then tone the joint to actually make it better.

-He doesn’t like. He says he is biased and believes scar tissue is still lax, doesn’t become non-lax, but he doesn’t use prolotherapy and doesn’t know for sure if it works/doesn’t work.
-Feels connective tissue defect may limit stability of scar tissue.

Pain (From spasm)
-Myofascial release
-TENS unit
-Not a cure, but will provide temporary help
-Usually just a few hours of relief
-Use relief time to tone
-Special mattress or pillow
-Stay in a neutral position
-Water, air or foam mattress
-Muscle relaxing medication
-“It’s my destiny to be the king of pain.” –The Police, 1983 (Joke!)
-Multiple causes of pain:
-DJD (Degenerative Joint Disease, aka Osteoarthritis)
Treating Pain
-MBSR (Mindfulness-Based Stress Reduction) or other psychological approaches
-Nerve Root Blocks
-Limited, can’t repeat indefinitely
-Block signal where pain originates
-“State of mind changes your experience of pain.”
-Joint or Bursa pain – steroid injections
-Limited, can’t repeat indefinitely
-Implantable stimulators
-Pain meds
-EDS is NOT an auto-immune disease.
-Analgesics & Anti-inflammatories
-Acetaminophen, NSAIDS, Tramadol, Pain killer receptors
-EDS is NOT an inflammatory disease.
-Inflammation is secondary to EDS, if we damage a joint.
-Muscle Relaxors
-Skelaxin, etc.
-Neuropathic pain control
-Tricyclides/SNRIs (anti-depressants)
-Anti-seizure meds
-Last resort
-It will take a COCKTAIL of multiple meds to treat each person.
-Scheduled, preventative meds are often more effective than ‘as-needed’ meds.
-Goal with pain management is to limit –but not eliminate—pain.
-See pain management specialists.
-It is not realistic to get rid of pain, but to manage it so you can live with it.
Upper GI
-GERD and Gastritis
-Acid irritation of stomach and esophagus.
-Acidic foods and/or NSAIDS may be factors.
-Acid neutralizers (Tums, etc.) may help.
-H2 blockers (Zantac, etc.) may help.
-Proton Pump Inhibitors (Prilosec, Prevacid, etc.)
-Safe to take  ONE of EACH category in same day
-Esophageal Spasm
-May be triggered by acid and/or NSAIDS
-Calcium channel blockers - Rx
-Sublingual Nitroglycerin (see specialist for this)
Lower GI
-Delayed stomach emptying
-Worse with opiods
-Can use Rx Metoclopamide/Reglan/Erythromycin (antiobiotic)

-No idea what causes IBS
-Possibly caused by certain triggers, including stress
-Pepto Bismol, Immodium
-Keep in mind constipation can cause overflow diarrhea à if taking something to relieve constipation, once harder stools pass, the stool that follows can be diarrhea
-Smooth muscle relaxers (for the gut muscles) (dicyclomine, Bentyl, hyoscyamine)
-Management of stress/anxiety

Dietary factors for GI:
-Fiber – important, make sure to take with plenty of water
-Dairy, sweets, fatty foods – worsen IBS, may worsen GERD
-Spicy or acidic foods – may worsen GERD/Gastritis
-AVOID things that worsen symptoms

-Aortic Root Dilation
-Mild-Medium risk
-Up to 1/3 EDS patients develop (not including Vascular Type)
-May not need to repeat if normal
-Any age – annually if dilated or enlarging
-Treatment if enlarging:
-Beta blockers
-Possibly ARBS

NMH (Neurally Mediated Hypotension) & POTS
 -??Autonomic dysfunction??
 -??Venous Distensibility??
 -Tilt-table test to confirm
 -Don’t really know WHY
 -Routine exercise – vascular toning
 -Salt & Fluids (BOTH and LOTS)
 -Beta Blockers (slow heart rate), florinef, midodrine
 -Tends to improve with age (less severe around 40s?)
-Once improved, may be hard, but necessary to then give up salt to keep heart healthy

Having EDS doesn’t protect from everything else – can still get all other diseases/illnesses, like heart disease, cancer, etc.)

-Usually clinically insignificant
-Mechanism unknown
-Usually responds to meds

Skin & Soft Tissue Fragility
-Avoid elective surgery – especially with inflammation
-Don’t pull tighter
-Use more
-Leave longer
-Routine wounds
-Consider liquid bandages

-Difficult to treat
-Rest, ice, pain meds
-Oral Appliances
-Physical Therapy
-Surgery as last resort

-Calcium with vitamin D – TWICE DAILY
-Check 25-Hydroxy Vitamin D Level – keep below 40
-Do weight-bearing exercise (NOT weights)
-Walking, elliptical, etc.
-Get DEXA no later than menopause
-Repeat every 2 years

-Depression, anxiety, low self-esteem
-You ARE NOT mentally ill
-You have chronic pain
-Living in bed takes toll    
-Worsened by:
-Chronic pain
-Loss of freedom
-Loss of preferred lifestyle

New friends: Emily, Christa, Dani, Alicia

Surgical and Interventional Practices in EDS:
Lecture by Dr. James Black

Refrain from using stent grafts
-Tissues are too fragile
-High rate of re-intervention

Daytime drowsiness
-Provigil (expensive without insurance)

Local anesthesia
-Takes longer to kick in

Take lots of vitamin C
-Though your body won’t absorb excessive amounts (greater than 250-500mg)

-Possibly may provide some lasting effects
-Requires lots of treatments at first, then maintenance treatments
-Lots of people find very helpful

-150mg, 2x/day
-Helps for constipation, can take 3x/day, one time each meal
-Can take as much as you can stand, until causes diarrhea
-Can take up to/more than 1 year to get magnesium levels in body normalized

-Keep feet UP!
-If you are run down, symptoms are worsened! Be careful!

Clinical Autonomic and Sleep Disorders in the Joint Hypermobility Syndromes:
Lecture by Dr. Alan Pocinki

Autonomic Nervous System (ANS)
-Regulates all body processes
-ANS Dysfunction is very common in EDS
-Over-response to body stressors
Basics of ANS
-Regulates everything that happens automatically, including sleep
-Functions in ‘Fight or flight’ (the biological response of animals to acute stress)
-Functions in ‘Rest & Digest’ (Parasympathetic Nervous System)
Circulatory problems with ANS Dysfunction:
-Orthostatic intolerance
-Temperature intolerance
-Varicose veins
-Venous pooling
-“Tip of the iceberg’

Chronic Fatigue Syndrome (CFS), Hypermobility, and Orthostatic Intolerance (OI)
-Often times occur together

Diagnostic criteria for CFS:
-Non-restorative sleep
-Post-exertional fatigue
-Muscle pain
-Joint pain
-Cognitive problems
-Sore throat
-Swollen glands

-Concept of adrenaline reserve:
-The “over-response” phenomenon (lots of adrenaline causes energy, flight or fight, invigorating state of mind and body, panic) – adrenaline increases when heart rate goes up, etc.
-The “over-correction” phenomenon – when heart rate goes down, etc. and blood pressure become more regular, the adrenaline becomes depleted, which causes low/no-energy, fogginess, exhaustion [CFS, etc.])
-Concept: The more depleted the adrenaline, the more exaggerated the response

ANS Testing:
-Tilt table test, QSART (Quantitative Sudomotor Autonomic Reflex Testing, Sweat test, etc.
-ANSAR – painless , non-invasive diagnostic procedure that determines how well a patient’s autonomic nervous system is functioning)

ANS Over-response Symptoms:
-Orthostatic Intolerance (OI)
-Digestive problems
-Urinary problems
-Balance problems
-Relieve symptoms
-Address underlying problem:
-Can include dehydration, low blood sugar, etc.
-Sleep problems:
-Prefers Benzos over Ambien, etc.
-Likes Propanerol at bedtime; it gets into brain
-Pick drug that will kick in quick enough but be worn off by morning
-Other drugs that are used at Xanax, Adavan, Resteril, Valium, etc.

Chronic Pain and Coping: Reducing Depression, Anxiety, and Pain through MBSR:
Lecture by Trish Magyari

Active coping leads to increased adaptation.
Increased coping leads to decreased disability.
-Active Coping:
-Talking about it
Strategies that focus on internal cognitive control lead to increased functioning and adaptation.
Positive pain coping leads to lower depression and anxiety.

Self-efficacy = How much we feel inside ourselves that we can find ways to do what needs to happen.

Mindfulness-Based Therapies (Mind-Body Techniques):
CBT (Cognitive Behavior Therapy)
DBT (Dialectical Behavioral Therapy)
MBCT (Mindfulness-Based Cognitive Therapy)
MBSR (Mindfulness-Based Stress Reduction)

MBSR (Mindfulness-Based Stress Reduction):
-Hot topic in Western Psychology
-Acceptance-based therapies
-“Changing our thoughts to change our behaviors.”
-Effective for increasing emotional intelligence
-Moment-to-moment thinking
-Non-judgmental thinking
-Aspects of Mindfulness:
-Attentional Control:
-“What else is happening at the present moment that we can focus on?”
-Recognize “good” and “bad” present feelings
-Cognitive Safety:
-Safe and present in our own mind
-No judgmental thoughts
-“Can I be with it in a friendly way?”
-Cultivate self-compassion, self-forgiveness, self-acceptance                  
-Mechanisms of Action
-Elicit “relaxation” response
-Decrease stress hormone levels
-Calm “fight or flight” reaction
-Cultivate quiet, alert state (homeostasis) in which healing and growth can occur
-Developed by Dr. Jon Kabat-Zinn in the 1970s
-Widely used now world-wide in hospitals, schools and communities
-Description of course:
-Practice formal and informal mindfulness
-8 weeks, 2.5-3 hour classes
-Group format
-Daily practice of 20-30 minutes
-Formal meditations:
-Choiceless Awareness
-Body Scan
-Walking Meditation
-Mindful Yoga – 2 routines
-Loving Kindness Meditation
-Informal meditations:
-Daily life:
-Mindful Inquiry

“Increased self-efficacy leads to Behavioral Activation.”

Book recommendation: The Mindful Way through Depression


New book coming out in September, 2010 –

Trigger Point Needling – Friend recommends with Lidocaine over without.

Senna tea for constipation – Friend likes Republic of Tea

Friend uses skate shoes for support – DC Mateca Mid-Top – cheap on eBay, and

At the conference, they sold Fit Flops for use as ankle supporting sandals (one of the vendors); friend likes them also and has several pairs

Ice Man- cooler with pad attachments, good for icing injuries

      5 Finger Shoes - several EDSers like these...???

Dr. Brad [Tinkle] recommended the following to a friend:
Recommends a daily preventative combo of Tramadol (Ultram), exercise, daily NSAIDS. Muscle relaxers if needed. If need narcotic, take same amount everyday, every 4 hours plus more if needed for breakthrough pain.

Neuragen nerve pain cream – Friend uses this and likes it a lot.