EDS Awareness

This is also a very good read. They just did an episode on Gray's Anatomy about EDS. I had the diagnosis in one to two symptoms LOL .... sorry, EDS humor ...... the EDS foundation is trying to spread the word and info about EDS, especially in the media and in entertainment. The Gray's anatomy episode was one of those success.

The follwoing article is really good, and even I learned a thing or two! It really demonstrates and explains why and how I am a walking medical dictionary of disorders and medications. It can seem like an impossibility, and even that we may be hypochondriacs or collectors of label and disorders, but once you see how and why it all relates to each other, then you will begin to understand. At least I hope so.

https://www.buzzfeed.com/zebrazebrazebra/31-random-facts-about-ehlers-danlos-syndrome-v5ff?utm_term=.jyppEzloPl#.fu5zMNVZ2V

1. Inherited genetic disorders

Because each EDSer is different, members of the same family can have greatly varying symptoms. One may live a relatively healthy life with almost no symptoms, while their family member uses a wheelchair and feeding tube.

2. There’s no such thing as “double-jointed”.

Hypermobile joints cause chronic, painful dislocations and subluxations. As we age into our 20s and 30s, this can also cause arthritis, and we become more stiff and less flexible.

3. Connecting the dots…

Until someone learns about EDS, it can be hard for them to connect the dots between their migraines, digestive problems, blood pressure, back pain, and heart problems all being about connective tissue.

4. Born this way.

*worst

5. Pain from 0 to 10 in .5 seconds.

Expending energy, just moving the wrong way, or sometimes even the weather can sometimes leave us in days of pain. Please keep inviting us, because we will go when we can! We want to!

6. Handle With Care

This is especially true with Vascular Ehlers-Danlos Syndrome, also known as VEDS.

7. Inflammation sucks.

Actual heart attacks are more likely with VEDS.

8. EDS and Insomnia

These adrenaline issues are also why we are more prone to anxiety and panic attacks. We are also often up with painsomnia - when we are in too much pain to sleep.

9. POTS

Postural Orthostatic Tachycardia Syndrome, also known as POTS, is very common for those of us with EDS. We often have blood pressure that is too high or too low, and can have dizzy fainting-like spells. Showers and hot tubs can be dangerous for us.

10. Velvety soft skin.

Often described as having the skin of a newborn and joints of an 80 year old.

11. Neck pain.

Having a gentle massage therapist who is knowledgeable about EDS can be crucial. Just another reason we need to spread awareness!

12. EDS and Pregnancy

Younger women with EDS tend to have less problems with pregnancy, but there is still a 50% risk that the child will have EDS, as well. It is a very personal and difficult choice to make, especially in the late 20s and older.

13. Vascular Ehlers-Danlos Syndrome (VEDS) kills.

Find out more information about VEDS from the Ehlers-Danlos National Foundation http://ednf.org/vascular-veds-emergency-information

14. Genetics

There are several different types of EDS, and there can be different types within the same family through mutation. But the symptoms can vary so widely from person to person, that genetic testing is the best way to know for sure.

15. Center for Clinical Care & Research (FINALLY!)

Ehlers-Danlos National Foundation has partnered with the Greater Baltimore Medical Center (GBMC) to establish the EDNF Center for Clinical Care & Research at GBMC’s Harvey Institute for Human Genetics. Open August 2014.

16. EDS & Anesthetics

We can have low absorption of many things - pain killers, vitamins and minerals, and yes - anesthetics.

17.

Also to stretch our bodies.

18. Forgot what I was saying…

It’s on the tip of my tongue! Why am I suddenly so tired and can’t remember anything? Argh.

19. Chronic Fatigue

Chronic Fatigue Syndrome, also known as CFS, affects people will all sorts of chronic illness. Those of us with chronic fatigue are also known as #Spoonies. See Christine Miserandino’s Spoon Theory for more info on that! http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

20. Fingers that sometimes won’t fing.

21. Why the Zebra?

22. TMJ can be worse than TMI.

Brushing teeth can suck when your jaw gets stuck.

23. Invisible Illness (for some)

We may not need any assistance one day, and a wheelchair the next, and then just a cane the day after that. Cleaning the house can mean having to rest in bed for a week. Again, see: The Spoon Theory http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

24. Digestive problems… gut instinct.

25. Changes

We never know when or where we will be in sudden excruciating pain.

26. Testing, testing, 1 2 3…

This is why raising awareness of common symptoms of Ehlers-Danlos Syndrome is SO important. You don’t know whose life you could change for the better, just by helping them find answers.

27. EDS and Chiari Malformation

Chiari is yet another congenital condition (meaning you’re born with it) that can be common in those with EDS.

28. Slipping ribs hurt.

Can be caused from the way a bra pushes against a rib, cuddling, coughing, hormones, stress, weather, sitting in a particular position for an extended period of time, driving, etc.

29. Compensating & problem solving:

*witty

30. You can help!

Care. Share.

31. What doesn’t kill us makes us stronger.

More information:

Infographics by Natalia Carrasco.

The Spoon Theory by Christine Miserandino can be found at http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

More information about Ehlers-Danlos Syndrome can be found from the Ehlers-Danlos National Foundation at http://www.ednf.org

Facebook has numerous support groups and Ehlers-Danlos Syndrome Awareness pages, including http://www.facebook.com/Ehlers.Danlos.Zebras

Five Considerations for Supporting People with EDS

On Facebook recently I found the best list of how to support and understand friends and family that live with this very painful, debilitating, and invisible disease called Ehlers-Danlos Syndrome-Hypermobility Type. Feel free to post this to your Facebook page:

http://www.chronicpainpartners.com/the-invisible-illness-ehlers-danlos-syndrome/

Five Considerations for Supporting People with EDS

1) People with EDS may seem preoccupied or withdrawn even when they appear to be healthy. The introspection might result from fearful anticipation about what the future holds, from managing pain, or having to be careful about all their movements. They may be exhausted and recovering from exertion.

2). As do most of us when our activity is limited, people with EDS experience anger. Since EDS is not curable, the anger is something they must learn to manage. The least the rest of us can do is avoid annoying them further by refraining from telling them what they need or how they might cure themselves.

Those who live daily with EDS symptoms know what they need and what to avoid. For example, getting out of the house and sitting in a park might seem like a great idea to you, but the effort can exacerbate EDS symptoms and bring your friend to a point of exhaustion. When having a bad day they will know enough to stay home.

3) Nonetheless, those with EDS like being invited to go out with their friends. Even if they are not up to accepting the invitation it is important to feel included. If an activity is one they cannot participate in having an option of going along to watch will be appreciated.

4) People with EDS can look healthy even when fatigued or in pain, and their stamina changes from one minute to the next. Activities enjoyed last week can be impossible this week, and sometimes they must cancel plans at the last minute.

5) No one likes being told how they should feel, or that someone else knows how they feel. That is annoying no matter what your health status, but extra grating when you are ill and hear it frequently. Support and understanding are what is welcome.

Chronic Pain & The Current Opiate "Crises" Knee-jerk One-Size-Fits-All Response!

Ugh!!!! Now we have this huge media and government frenzy over the so called "Opiate Crises". Is there a big problem with ODs and other types of opiate abuse and deaths from drugs such as heroin, opiate prescription drugs, and other opiate drugs such as morphine and such? Yes. Should all users of opiates be painted with the same broad brush and treated accordingly, i.e. the same in all cases? NO!

The problem as I see it is that there is currently so little real research and understanding and lots of big claims and finger pointing, when it comes to opiates in general, and management of chronic pain specifically. The same happens to drugs for depression and ADHD. Who really suffers from these knee jerk tall tails and official responses: Those that legitimately need the meds, that's who! We go through hell each and every time these alarms are raised and knee-jerk responses are put in place, and thus we are often chronically under-treated. Part of the problem for many chronic pain patients is that, even today, pain clinics chant the mantra of "it is only over reactive nerves, there is nothing wrong with you physically for you to be in chronic pain." They say this right into the faces of people with Osteoarthritis, Rheumatoid Arthritis, Degenerative Disc Disease, EDS HT, and other diseases where the pain IS caused by autoimmune and other forms of tissue destruction, yet still those of us with these diseases are still shoved over to "it is not real", "just in your head or nervous system", you are fine, nothing is wrong or being hurt, category of pain patients. Thus we are treated as potential pain med abusers because, hey, our pain is nerve over-stimulation, not actual physical pain due to tissue damage, or so they think.

Opiates work! Plain and simple. With nerve pain, the worst pain I often experience, the only thing that touches it are opiates. Nothing else works. Opiates do NOT work as well on inflammatory issues, then Ibuprofen and such meds work better. Often with chronic pain you have both nerve and inflammation, thus you need a mixture, or moving back and forth between two or more types of pain meds. The problem is not the opiates (though I look at them as the gift to humanity that is actually a double sided blade: It does great humanitarian help in cutting suffering, and can, when abused or with personal rare reactions, hurt you as well). The problem is our narrow minded, factory line approach to medicine in the western world. And our one cause, one treatment isolated approach to disease and treatment. These are the problems, not opiates as a medicine. At least I believe so in most cases.

I have devoted my life to the research of my family's diseases (yes plural, EDS HT causes dozens of other diseases with in each person, as well, and can be different from family member to family member). Out of frustration and chronic under-treatment and just plain life long suffering within in a body that is my own private hell and torture chamber: i.e. Iron Median - (yes chronic pain is akin to chronic torture), I have researched all kinds of alternative and accompanying treatments for pain and bodily dysfunctions. These include, but are not limited to: Chiropractic (by far the best for pain and dysfunction); Medical Pot use (does not work for me or my daughter); Acupuncture (also does not work for me. Actually makes it worse); Warm Water Pool Therapy (works wonders); Hot Tub (oh yes that works quite well); Deep Tissue Message (much needed for relief and healing); Relaxation Techniques (wonderful additional treatment); Bio-Feedback (worked well for me); Singing (works almost as well as my opiates on a short term basis, with some residual relief); Distractions (such as reading, watching TV and movies, or other things such as crafts, volunteering, and so forth); and finally but not the least, Mild Exercise and Swimming in a Regular Cold Pool, when tolerated and does no lasting harm (I can no longer do this, which I miss greatly). Most chronic pain patients, if not all of them, over time, have done this research and taken on many of these techniques, but when it comes down to basic pain management, medications are still our first and foremost front line of care. Why, because it is often the most effective, both in degree and in length of time of relief.

One final thing. Chronic Pain, by its nature, is a life changer. Unless there is treatment for it go away or be fixed, or has some sort of time line (like "normal" Fybromialgia seems to have), your life is permanently altered, and will never be able to function like you did before. I think people, like athletes, performers, and people in high stress and powerful jobs, over use painkillers because the need to be as high functioning, and pain free as possible, so that they can do their job. We, as a society, do not take lightly to human frailty, nor illness, dysfunction, or disability. Our society refuses to meet or make room for the needs of those who are not in top peek working order, i.e. a good little cog in the machine. So to not fail, to not loose your job, position, or career, you end up taking massive doses of painkillers in order to function as if there is nothing wrong or going on with you and your body. As a culture, we scorn those who "fail", who do not reach the "gold", who do not win consistently, what ever race we imagine for them. Not only is there social stigma associated with this, but also financial disaster, i.e. punishment, as well. So, of course some people reach for those opiate meds, but they have this double edge: the more you take, the more you will need next time, until your body finally backlashes and actually starts to cause more pain with each increased dose rather than giving you that relief you use to get, but now you are hooked, addicted, trapped. At least that is what I have observed.

To get around this you must first accept that your life has changed and that this is now your new normal. Live with it! Second, choose to reject the medical community and the pharmaceutical industry's deceitful allure of a pain free life where everything goes back to the normal life you had before chronic pain. It is an illusion, one born out of ignorance (medical community) and/or greed (sellers and manufactures of those drugs). Doctors and the medical community are all too human, but they are catching up, but the pharmaceutical industry, those we depend on for our life saving meds, have only the bottom-line as their primary and often only concern, even if it kills you for them to do. I hate the term "Big Pharma", because it casts all pharmaceuticals, and the companies that make them, into this two denominational evil villains, with no redeeming value what so ever. This is not true. Most of use that are chronically ill would not be here with out pharmaceuticals, and the companies that make them. Diabetes comes to mind when I remember this bit. So to all other rare and not so rare diseases that use to kill so many people, especially children. So I do not use the term "Big Pharma" because it is unjust, and does not depict the whole truth of the matter.

In summery, we need to walk this new path carefully, least we do more harm, and even possible deaths, by brushing all opiate users as "less than". To equate a heroin user with a well functioning and med managing opiate user who is in chronic pain and has done so for decades, as equals and who need the exact same draconian handling, is a disaster waiting to happen ....... yet again!  

Pain - Such Complexity In Such A Little Word!

What most people do not understand is that there are different kinds of pain. To name a few:

1) Acute Pain is pain that is because of an injury, it is really bad, and is pain you have now, but as you heal, it lessons, and if lucky, it goes away;

2) Residual Pain can be nerve pain (neuropathy) from damaged or trapped or pinched nerves, Surgical trauma, Neuroma formation which is disorganized growth of nerve cells at the site of a nerve injury, and so forth;

3) Then there is Chronic Pain, and this can be caused by a multitude of causes, including Residual Pain.

Some chronic pain may be over sensitive or over-amped nerves or brain receptors, but a significant amount of chronic pain is "ongoing injury & re-injury, degradation, malformation, destruction, & damaging" of tissue and bone. Chronic pain is the result of these on-going injuries and tissue destruction caused by many different kinds of diseases, disorders, and malfunctions with in the body.

You can not treat all pain the same way, and with continued tissue damage, you can not just simply be stoic, especially when the spread of damage, as you age, increases, thus involving more nerves and tissue, and encompassing larger and larger areas of the body. Chronic pain takes many different types of treatment, different types of meds, different types of therapy, different types of surgery, and so on, all of which may change day by day or hour by hour, 24/7, 365 days a year. It can be a constant, ever-changing juggling act.

After decades of doing all that juggling, and managing the best you can, it may get to a point where none of that helps or works anymore, like it has in my case after 47 years of juggled management. Nothing works anymore, so now we have to look at pain medication changes and increases. I do not like it, it concerns me greatly, but after trying to find something other than more and stronger meds that would make a difference for the past 5 years (after 41 years of management), I have to consider going on time released morphine. So it has finally come down to either do that, or put a bullet in my brain pan. Torture is torture, whether it is done to you by someone else, or is done to you by your own body. You can only live so long like that before it completely breaks you down physically, mentally, emotionally, and spiritually.

UPDATE: Saw my doctor about the need to change meds and asked about possibly going on time released morphine. After a long discussion about the nature of pain and opiates, and new studies about how they both work and interact, we decided that I would be best served by simply increasing my Tylonal/Codine #3 from 2 pills a day to three. That was last May. My increase in meds apparently jumped me up into the category of pain med user that the government deems needs watching with the passing of the CURES Act a few years back. More on this new wrinkle in my next few blogs.