EDS is Such A Pain – What Can You Do For You?

Pain is a symptom of EDS; it is perhaps the most common symptom of EDS.  However, EDS pain differs from the pain in other disorders greatly.  EDS patients not only experience Chronic Pain, but Chronic Acute Pain.  The term Chronic Acute Pain may sound odd, but it is a spot on description to one of the components to the pain an EDS patient suffers.  EDS patients suffer from frequent dislocations, and/or subluxations of joints.  These dislocations, or subluxations cause Acute Pain; but because they are suffered frequently they are a Chronic manifestation of Acute Pain, this the term Chronic Acute Pain.

One of the most important specialists for a patient with EDS is a Pain Management Physician.  These are Physicians that are trained, and boarded to help treat and manage pain.  Finding a good Pain Management Physician is extremely important for any EDS patient.  However, one thing to be mindful of is that to achieve maximum pain management you are going to need to forge a relationship with your Pain Management Specialist.  It is going to take time, through trial and error to find the best plan to manage your pain.  Additionally in this day and age of drug seekers, and the DEA becoming involved in our healthcare there will be obstacles for those patients that require narcotics to manage their pain.  Many doctors will require contracts and regular urine screenings in order to prescribe narcotic pain medications.  Many still will not prescribe them until a relationship is formed, and they feel they have an understanding of your wants, and needs as a patient.  There will also be some doctors that will refuse to prescribe narcotics to any patient that is not a cancer pain patient.  However, don’t give up.  Should you feel that you are not getting what you want from a physician, your best course of action is to speak with that physician directly, honestly, and respectfully.  Explain that you just don’t think that the two of you are a good fit, and could he recommend another Pain Management Physician that might be a better fit for your needs.  You must be careful to not just switch doctors often as you could quickly be labeled a doctor shopper, and that will get you lumped into the drug seekers.  So there is a delicate balance to achieve with a Pain Management Specialist, but once  you find one that fits you and develop a working relationship, great things can happen.

One important thing to remember with EDS pain is that there is not going to be a “one trick pony” to cure what ails you.  You are going to have to look at your pain plan as a set of percentages that add up.  Once medication may reduce your pain by 10%, and that is a win.  Physical Therapy may offer another 10%, and that is another win.  You are looking to combine multiple modalities of pain relief that get you the best possible outcome.  Here are some things you can do at home.  These are not medical advice, and should be discussed with your physician to insure they are ok for you.

Epson Salt Baths:  I love my Epsom salts, soothing, and you get magnesium for you that is important to pain relief.  You can also add essential oils to your Epson salt baths.  Sore tootsies from a day spent on your feet, give those toes a nice Epsom Salt Soak and add some cooling peppermint essential oils for extra relief.  When I’m feeling a little down I might add some uplifting Sweet Bay, or perhaps some Lemon which is a person happy smell for me.  Lavender is great to add to a bath before bed as most find the smell relaxing.  Chamomile is relaxing, and also considered to soothe muscles.  I prefer Aura Cacia, and they have recipes and educational information about their essential oils to find what is best for your needs. http://www.auracacia.com


Topical Products


Biofreeze and I are good friends; it is by far the best cooling product on the market in my opinion.  It doesn’t leave that grandfather balm smell, and nothing cools quite like it.  I rub it on my shoulders in the morning when I’ve subluxated, or dislocated in my sleep.  It takes the edge of the pain a bit so I can work it back out.

Po Sum On – you have to just love the name. “I’m gonna po sum on my hurt’n back”.  It’s actually a traditional Chinese treatment.  I love it; it has a pleasant herbal smell.  Here is a little info on it:

Po Sum On Oil is formulated with the following ingredients:

  • Peppermint oil, which is used to alleviate headache, back pain and post-herpetic neuralgia when applied topically
  • Dragon blood, the resin from Daemonorops draco, which is commonly used to promote blood circulation and tissue regeneration while relieving pain
  • Cinnamon oil, which has warming analgesic qualities and aids in circulation
  • Chinese camellia oil, which has been known to effectively eliminate chill and ease pain

Po Sum On Oil provides effective treatment for:

  • Chest discomfort from coughing
  • Itching from insect bites
  • Joint and muscle aches
  • Motion sickness
  • Rheumatic pains
  • Stomach ache caused by chills


  • Apply Po Sum On Oil to affected area not more than three to four times daily.
  • Po Sum On Oil is suitable for adults and children over two years old.
  • Do not apply on open wounds.
  • For external use.


Zostrix: This is a capcasin product.  There are many on the market, but I’ve had the best success with Zostrix.  I use the HP (high potency) product.  This is not for everyone; some people are more sensitive to it.  When you first start using it, it can burn a little – almost like a sunburn feeling.  But, with repeat use it has helped my nerve pain in my foot a great deal, as well as some pain I have in my quad.  Some studies show that it deadens nerves, which if you have nerve pain can be a huge win.


Hot and Cold Therapy


Heating pads – These are good for just making things feel better.  They should not be used on acute injuries.  They should be used with caution as well.  Long term exposure to low level heat can cause Erythema ab igne or toasted skin syndrome.  This is something people get from heating pads, heated seats, and from lap tops.  It can cause a permanent rash, and some studies show that it can increase your risk to certain skin cancers.  That said, with proper and conscious use it can help reduce pain.

Cold Therapy – great for acute injury to reduce inflammation.  It can also reduce pain.  Sometimes nothing feels better on a sore muscle than a nice ice pack.  I use them on any acute dislocation/subluxation to help reduce any inflammation.


One thing many with EDS get that can contribute to pain is tight muscles, and muscles spasms.  Having a good stretching protocol is helpful, or doing lite yoga – being mindful of your body’s limits is very important.  Don’t wait until your muscles are so tight that it takes a few weeks of work to get them supple again.  Keep them stretched, hydrated, and healthy.


Two new things I have been trying that have shown great promise.


Trigger Point Therapy at home using the Trigger Point Manual I got on Amazon, with a knobble as well, and the back buddy junior.  I have found this has been helping as I get into it more, and use it more often.  I had one area that was a constant bother in my lower, lateral leg.  I’d say I’ve had about a 40% reduction in bothersome since I have started using this.  Book: http://tinyurl.com/lc3j3mo  Knobble: http://tinyurl.com/m6msybe  Jr Back doodle-ma-flotchy: http://tinyurl.com/k5tf6tx


I’ve also been using the Giam Hand and Wrist Balls, they work well with the trigger points, the melt method, and for gentle wrist and hand exercise.  I love these little guys: http://tinyurl.com/ktg6t5v


And my newest addition is The MELT Method.  I’ve read great things about it, and I’m looking forward to putting it into practice.  The theory is interesting, and I have heard from some that use it that have been very happy with it.  You just have to make sure that the foam roller you get is soft. http://tinyurl.com/mdltczl


So these are just a few ideas for tonight.  I will of course add other things along the way.  What works for you?  What tricks do you use for certain pains?  What other information would you like to see on this blog?  Please leave comments to let me know.  Also, if you ever would like to speak with me personally you can contact me through edsatlanta@classicone.com


Dear Drug Seekers,

Dear Drug Seekers,

I wanted to take the time to thank you for what you have managed to accomplish.  It really is somewhat of an amazing feat when you think about it.  You have managed as a group to have such an overwhelming effect on healthcare that impacts so many people in such a negative way, that I am certain there is now a special place in hell for all of you.

I know that alcoholism, and addiction is a disease.  I am more aware than most having lived with, and loved an alcoholic for a time in my life.  I have lost many friends to addiction, and have seen many battle it for years.  It is something that grips you, and does not want to let go. It destroys families, and lives.  I am more sympathetic than most to your disease.

However, I wish you could have kept your horrible disease out of doctor’s offices.  You see, I suffer from an invisible disease that brings with it chronic, and debilitating pain.  I look healthy, and to most I seem healthy.  Under my smiles, under my generally well presented façade is chronic, never relenting, ever present, pain.  I don’t know what it’s like to not be in pain, I don’t remember a time where I was not in pain.  I have been in pain every single day of my life since I was a child.

It used to be that when I needed it, a doctor would be happy to write me a prescription for pain medication.  I’ve never abused it; hell I’ve probably thrown out enough expired pain medications to cause an addict like you to have a total breakdown.  I only take them when I absolutely need them, when I’ve reached the point that suck starting my shotgun seems like a truly viable answer to my problem.

Now when I need pain medication it takes a god damned miracle to get it.  Doctors are fucking terrified to prescribe it, and the people who really need it are just as terrified to ask for it.  We don’t want to be labeled a drug seeker, that’s not who we are.  We are people who live in constant pain. We are people who need to have pain medications.  We are careful how we use them, and we only ask for them when we truly need them.  Thanks to your lot we now barely have access to the medicine that we need.

You are the reason I have lost so many precious hours of sleep, days where I am up for 36 hours or more.  Days on end where I am lucky to eek out a few joyous hours of sleep, 2-3 at the most.  You have made my life worse, you have taken joy from me, and you have in some cases taken my dignity from me.  I didn’t ask for this horrible disease that leaves me to suffer in endless pain.  I never did anything to you.  You have done irreparable harm to me, and so many others.  You’ve done harm to the medical system that I’m not sure can ever be repaired.  You’ve denied me the medications that ease the pain a little, that take the edge off enough that I can clean my house, go for a walk, take my dogs to the park, or meet my friends at a museum.  You can’t fix that; you can’t give me those hours of sleep back.  You can’t repay me the joy you’ve stolen.  You can’t go back in time and given me those days I couldn’t get out of bed back.

So figure it out, get clean, and do something, anything.  But, don’t you dare go to a doctor’s office to get your fix.  As an addict you’ve done enough damage to your loved ones, what the hell gives you the right to make the life of someone you’ve never even met worse?  Just who the hell do you think you are?  You are selfish, self-serving, lacking all forms of awareness of others.  You don’t even realize how far your hideous disease reaches, beyond your family, and friends.  No, it wasn’t enough for you to ruin the lives of the people that love you.  No, not you; you had to figure out a way to ruin the lives of people you never met, people who already suffer in silence every day.  So, again I say – there is a special place in hell for you my dear drug seeker.


The Bendy Belle