remdreamtime - Tumblr blog

remdreamtime · 8 years

Photo

Image: 8 Tips for Patients Newly Diagnosed with Ehlers-Danlos Syndrome

By Ellen Lenox Smith, Columnist

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.

You’ll need to stay loyal to the daily workouts. But believe me, I love being proactive and so appreciate the good that is now showing – like having the sacrum hold!

6) Develop a network of doctors that understand EDS or are willing get educated. Feel free to visit my website to see if a doctor is listed near you. Also feel free to contact us if you have a good doctor that we can add to the list.

Remember, we are complicated and never get all better. That is a lot for a doctor to want to take on. Be patient and look for compatible personalities and let them learn through you.

7) Be sure to have a cardiologist. You should have an echocardiogram (echo test) done yearly. The test uses sound waves to produce images of the heart and allows the cardiologist to see if your heart is beating and pumping blood correctly.

8) Determine drug and food allergies.*** I wish years ago I had a clue that there was testing out there to see why I had bad reactions to some medications and foods since birth. A simple DNA drug sensitivity test can help you find a safe drug to be able to put into your body. The same goes for food sensitivity testing. You will learn what foods are causing issues or what drugs are not metabolizing.

Both these issues are VERY important to address. If you keep taking medication or eating foods that are not compatible to your body, then you are adding to the inflammation in your system. More inflammation means more pain due to the increase of subluxations.

It’s also important to remember that you are not alone. Find a local EDS support group and learn as much as you can to live more safely with this condition.

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

*You should be evaluated by a neurosurgeon not a neurologist for things like chiari, tethered chord, CCI, etc. While there may be some neurologists equipped to diagnose these things, the vast majority are just not and this falls more clearly in a neurosurgeon’s area of expertise. Seek out an EDS expert if possible

**I’ve been doing this same protocol and blogging about my experiences. It does seem to be helping, but I’ve had my fair share of set backs (of course). Click here to read those posts, or here to read my explainer/review post about it

***I’ve found that taking enzymes has made a BIG difference for me. Without them I have so many issues with food and struggle to eat, and with them I can almost eat normally. It’s a huge difference

Thought this was all great advice and wanted to share here. Please feel free to add any tips of your own below. Here are mine:

9) Bracing! Finding the right support for your joints can make a world of different. One of the first things I did when I realized I might have EDS was purchase cheap oval 8 ring splints on amazon, and it made a HUGE difference. Using a neck brace in the car and to sleep made a world of difference, and is probably the only reason I’m not very poorly right now. And my knee braces and posture shirts give me so much freedom and pain relief

10) Test for & treat Mast Cell Activation Syndrome (MCAS). MCAS is really common in EDS and POTS patients, and is characterized by allergies, asthma, GI issues, rashes, facial flushing and more. Identifying it can be tricky, but luckily the first line treatment is all common & safe meds (mostly over the counter), so you may be able to treat it before confirming the diagnosis

11) Watch/read this presentation on Breaking the Cycle of Chronic Pain/Poor Sleep/Depression/Fatigue! I think this is one of the most useful comprehensive explanations of the problems that effect our quality of life so much, yet are neglected by most Dr’s. It really helped me understand the problem, and it has of concrete treatment suggestions.

12) Realize that this will take time. You’re not going to be able to see all the Dr’s you need or try all the treatments right away. I know it’s hard to be patient when you feel terrible, but hang in there and realize it will take time to find a program that works for you. A year or two can make a huge difference, even when it feels like you’re moving at a snail’s pace

If you want to learn more about EDS and related conditions, I have a giant list of resources in dozens of categoires which you can find here

306 notes · View notes