EDS

Was reading another blog by an EDS sufferer and thought she described it as basic and easily as possible, so wanted to copy it because it's exactly the same for me. For her complete blog check here.

"Due to the EDS, every collagen cell in my body is faulty and is programmed to be too stretchy and ultimately becomes like an old stretched out rubber band. Normal rubber bands are tight and when you stretch them they bounce right back to their previous shape. EDS sufferers have collagen that is already over-stretched, so when you stretch it out again, it does not bounce back to its original shape, but stays lax and loose. Therefore, we’re super-flexible…but pushing our joints to their limits (as with stretching, yoga, Pilates, heavy-lifting) does long-term irreversible damage.

Practically speaking, this means that my joints are all incredibly unstable and frequently dislocate. Some of my joints bend completely backwards (I can do neat party tricks like bending all of my fingers to touch the back of my hand) while other joints like my wrists and knees bend about 5-10 degrees backwards. The muscles around every single joint also tend to tighten way up, to do the job that my tendons and ligaments aren’t doing: keeping my skeleton in one piece. Dislocations and always-tight muscles = whole body chronic pain...

Think of EDS like extreme rheumatoid arthritis in every single joint, with the addition of random dislocations. And “every single joint” means just that: fingers, wrists, elbows, shoulders, ribs, vertebrae , hips, knees, ankles, toes, etc. People with Ehlers-Danlos Syndrome experience acute chronic pain in some or all of their joints and experience neuropathic (nerve) pain in some or all parts of their body, and some even have heart defects that can cause sudden death. Most of us have additional problems with vision, digestion, migraines, pregnancy, and our jaws and teeth. It's an all-encompassing disorder. I have the "Hypermobility Type" of EDS, and my most serious symptoms are in my entire spine, hands, wrists, ribs, knees, and hips. Thankfully, I do not have the "Vascular Type" of EDS, which can cause sudden and early death."

Needles

Saw Dr. Panagos yesterday and he feels it's a shoulder & a neck issue. Of course, why should it only be one? Anyway, we agreed to do a cortisone injection into my shoulder and a trigger point injection into the muscle near my neck. He said one of his patients had a similiarish situation and they did this and it worked. He's quite weary about an epidural for my spine because of the HEDS (Hypermobility Ehlers Danlos Syndrome) as he says that the tissues in the body have easy friability and he doesn't want to make things worse in the long run.

I asked him what we could do if this works to prevent it from happening again. He said that he wants me to strengthen but no flexibility. He suggested Pilates, and I told him my hip surgeon told me not do that, but he said just do the strenghthening bits. When I feel better I will get out my old Pilates disc and see what's there to work with. I also asked him that what if the injection helps my shoulder but not my neck, and he said last resort would be the spine injection if I am still in agony. Fun stuff!

Dr. P also asked if I have been able to find out any biological information on my birth family. He said it would be very good to know what their health situations are. I told him that there is a group in NY fighting for our records to be open, and G-d willing it will pass on the floor this year, so perhaps in a year I will have some information. If you care to help, please get the information here, and help contact the key reps and senators in NY and say you support senate bill S5269. We need our bio/medical info - especially people like me!

Today I rang my chiro to update him and I will be going to see him next Thursday. He wants me to give everything a chance to work in and settle down. I am praying SO hard that this will work. Next Wednesday I have an appointment with my hand surgeon to see about my right hand/wrist. ARGH! It never ends!