Hi . I copied and pasted some info about the study my daughter is in for Ehlers Danlos Syndrome with Dr Norman Marcus in Nyc. I could not figure out how to copy this link.
EDS-Congenital diseases, such as Marfan Syndrome and Ehlers-Danlos Syndrome (EDS), may cause joints to repeatedly dislocate, resulting in stiffness in the muscles surrounding the joint – a way that the body attempts to help the unstable joint. The reflexive stiffness and spasms in the muscles surrounding the unstable joint cause pain.
It is known that physically active patients who have stiff muscles frequently develop pain. What is less known is that patients with overly flexible joints will also frequently develop muscle pain.
Treatment to relax the muscles such as injections into trigger points or into the muscle attachments may do too good a job – that is, if the muscles become too relaxed, the joint may become too loose and continue to dislocate.
An alternative treatment we have used is low level laser therapy (LLLT). LLLT uses light energy in a narrow wavelength (810-980nm) to deeply penetrate through the skin into the muscles and tendons. LLLT produces an increase in chemicals in the body (Cytochrome C Oxidase) that enables the production of ATP (adenosine triphosphate) which can aid in healing damaged tissue. Using LLLT to reduce pain in EDS patients has resulted in ~40% decrease in pain lasting for 3-4 weeks without making the underlying muscle too loose.
Share
Tags: Dr. Marcus, Dr. Norman Marcus, Ehler-Danlos, joint pain, Marfan, muscle pain, NMPI, Norman Marcus, Norman Marcus Pain Institute
Hi Suzie, thanks for sharing. If you are interested, Ben's Friends also has a support site for EDS, http://www.ehlersdanlossyndromesupport.org/. I hope you are doing well. Hugs!!
This info was about my daughter. Fortunately she has good support and a friend that has Eds as well. She has a pretty active life apart from this awful condition and does not spend a great deal of time on the computer when she is not working . I posted that info as some of the chatters here were asking me about this study that my daughter is in and it was easier for me to copy and paste the info. All the best to you and
That is a great piece of info, Suzie! Thank you for sharing it. We used to have a member named Waterwaves, I believe, who has E-D and posted a lot of info on it. She was a great resource but I haven't seen her here for a long time. I wish I could find her so she could connect with you. It's amazing how few people and doctors know about E-D and yet people with loose joints are not that uncommon. And, unfortunwtely, those loose joints lead to extremely painful dislocations. Even for people who have nothing more than knees that are slightly tilted inwards when they are standing with locked knees can get it.
Hi petunia. You’re welcome . Just wanted to point out so as not to scare anyone into thinking yet another disease may be possible for their pain, etc. Ehlers Danlos Syndrome is a very rare genetic disorder which , as you mentioned above not many medical people are educated about it.sigh
All the best and------
HUGGGGGGGGGGGS
Suzie