By Ellen Lenox Smith, Columnist

Ehlers-Danlos Syndrome (EDS) is a condition that causes one to be born with deformed connective tissue, the “glue” that holds the body together. At this time, there is still no cure to correct this problem, so living life with this condition means a accepting a certain level of chronic pain.

There are simple things to learn to live your life with EDS more safely. For instance,  learning how to properly strengthen the muscles that are on overload doing their job, along with that of the useless ligament and tendons. Or understanding how certain twists and turns bring on other slippage of the body.

Living with Ehlers-Danlos Syndrome means, at times, a long, lonely and difficult journey burdened with a constant search for direction on how to try to create something resembling   a normal life. I am 65, but it wasn’t until eleven years ago that I was finally given the correct diagnoses of something I was actually born with!

There have been times that I felt guilty for almost wishing I had been given a diagnosis of cancer — for then the doors of hope, direction, plans and medical interest would have been with me at all times. Instead, as many other EDS patients have learned, we cope with the unknown, judgment from friends and even family, isolation, confusion, and the lack of consistent knowledgeable  help.

All I ever wanted, when first diagnosed, was for someone to reach a hand out and guide me. That hand has never been there. So, instead, I have spent the past eleven years attempting  to help prevent others from having to replicate my experience. I simply wish to assist other EDS patients avoid some of the uncertainty and stress that I was forced to experience.

The task is often overwhelming and difficult, but you have no choice. This is the life you have been given.

With that in mind, I would like to make suggestions to the newly diagnosed, in hopes that your journey will begin safely by addressing these issues:

1) Confirm with a knowledgeable geneticist that you have EDS. If you get the feeling they do not understand or believe you have EDS, then go to another geneticist. I met with three before I was convinced and accepted the diagnosis.

2) Mourn your losses. It’s okay and necessary to allow yourself to mourn the loss of your past life — it will never again be exactly as you have known it. As you go through that process, remember you need to reach the goal of moving on.

3) Address pain control. Accept that you cannot take this journey on your own. You need to address your pain to have a chance of living as normal a life as you can. You might be like many of us and have trouble metabolizing certain medications. In that case, DNA drug sensitivity testing would help you to identify a compatible pain medication.

Many respond beautifully to medical marijuana instead of opiates. It can be taken in a simple dose of oil at night, that not only allows you to sleep but also carries pain relief to the body even into the next day.

4) Be evaluated by a neurologist for common EDS conditions such as tethered cord, Chiari I Malformation, and instability of the neck . This is a very important. Every patient should have this evaluation and have a neurologist monitor you. Many of us need to have the tethered cord released to end issues with the bladder, kidneys, pressure in the chest, and issues with legs. If you test positive, get it done and then you will feel so much better and be able to progress onto physical therapy more successfully.

Instability of the neck will cause havoc with your body if strengthening does not succeed. Chiari I Malformation must also be addressed. Any or all of these may be an issue for you in time, but please know that correcting them when the time is right will make the difference in moving forward again.

5) Find a good manual sacral physical therapist. This is your chance to take better control of your life by learning, through the guidance of a manual therapist.“Living Life to the Fullest With Ehlers-Danlos Syndrome” is a new book written by my therapist, Kevin Muldowney. He learned by taking on many EDS patients at his clinic, that there are safe ways to strengthen our muscles. I have been through the protocols and have found they work for me.

Move on to tip #8 at the source here.

2 thoughts on “Pain News Network: 8 Tips for Patients Newly Diagnosed with Ehlers-Danlos”

  1. z says:

    Ellen Lenox Smith created divides within my state by her own experience with EDS. She is fortunate to be dewply connected to our corrupt financial and medical institutions and because she has found help through those connections, patients without Ellen’s friends and money have been denied care!! She teaches people to become dependent upon folks who know even less about EDS that most patients, and her ignorance about this condition has alienated too many women and girls in Rhode Island.
    If you have money and wish to throw it away, listen to Ellen. Otherwise, wait until yhese folks, like Ellen, have passed, and then find a doctor. Ellen promotes a simplified approach to EDS which misrepresents the horrific struggle zebrawarriors face, and she has even helped the state silence those of us who are too poor to abuse the medical-industrial complex and fame business like Ellen! Ellen yold my mother that i was faking because my EDS is worse than Ellens and I am half her age. Ellen can only speak about her sinhle type of EDS and puts the rest of us in harms way. Why?
    So she can write a book, not give up her farm, not give up fkying arihnd the country, not accept the reality of her genetics and throw money at her problems.
    I refuse to drop another dime becayse this woman has lead EDSers off a cliff.
    Hands down. Ellen is being greedy and socially irresponsible at yhe cost of other EDSers. I cannot support any person who puts their friends’ businesses children who are in pain. EDS is best managed through personal programs relative to each personal symtpoms. Pretending otherwise is spreading misinformation for personal gain… Sickens me how this woman is so fortunate and she uses her advantages in life to give only herself more. When she dies, she will have given Rhide Island nothing except her book – which says nothing new or honest and has hurt our entire cause. So so sad. I hope ellen accepts her genetics and takes a rest from spreading misinformation, so the rest of us have a chance to share the reality of life with EDS

  2. br says:

    I completely agree with Z. ELS gives out bad advice about EDS but calls herself “an expert.” She is a troublemaker and she’s one to stay away from.

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