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How cool! I’m a bit jealous I must say. I found a pretty good eye dr when I had a sudden onset of eye pain last Feb. She is unfamiliar with EDS and chiari but open enough to learning. For example, when I mentioned that pain with side-to-side eye movement is a noted chiari symptom she asked if I had any materials on that. As it turned out I had the Journal of Neiroscience article with me that my neuro refused to look at. She GLADLY took it and was excitedly talking about how she was very happy to have the info and to keepmlearnin, especially across disciplines. Quite the opposite of most docs I find.
So, I’m sure you will be in good hands with the other Dr D as well. (That’s got to be confusing having two DrD’s in one house. 🙂
I’ve had eye pain for about a year with one episode where it was very bad. Most often it’s a dull ache that flairs when driving or reading text on the TV. Just saw the ophthalmologist and he did all his tests and said he has no idea why I have eye pain. It seemed to coincide with an episode where my whole back seized up too. That’s a dull ache now all the time. I’ve always had upper back and neck issues. Now the jaw has lit up and my shoulders. No one is putting anything together. I had a singular episode of painful swallowing. May have been calcific tendonitis in an anterior cervical spinal muscle according to the ER.March 2, 2013 at 8:18 pm in reply to: Do EDS and Marfan's effect the eye in the same way? #3517
To simplify a long convoluted story as much as I can…
If a glaucoma specalist has experience operating on people with Marfan’s will this translate to a patient with EDS?
Hi Lisa, I wonder what type of surgery you are referring to? Most Marfans specialists are used to subluxated lenses — something us “regular” EDSers don’t tend to get. Depending on the surgery (for glaucoma, I presume? is it a trabeculectomy?), can you mention to them that they may want to consider mitomycin C to prevent too much scarring (common in many of us). And of course, please tell them we take longer to heal. Oh, Heavens, don’t forget that WE NEED MORE ANESTHESIA. 🙂 Lots. Are you doing OK, Hon? 🙂 Diana
That’s interesting. I am hypersensitive to all drugs and need so much less than normal. If I have a normal amount of anesthesia they have a hard time waking me up.
I assume this is a continuation of the previous thread that was closed.
Lots of great discussion as you said.
I just tried something new. Not sure why I tried it but it helped a lot.
I laid down with my head lower than my hips. I have a massage table and lowered one end and put my head at the low end. When I get up after about a minute, my back pain goes away!
That seems exciting but scarey to me at the same time. I seemed to be in a better mood too.
Not sure if it’s advisable but right now if it feels good, I do it, several times a day.
Magnesium before bed? That helped me in the past with palps. (I don’t get them anymore for some reason), it helps with aching muscles too, and trouble sleeping.
Gee, why am I not taking it? I ran out and didn’t restock…
To begin, I don’t have advice for you, sorry to say.
I have never been on diamox but I do have similar experiences with cognitive deficits and motivation. I have tested as a child with a high I.Q. but I often feel so disconnected from the printed page and have to reread. I also have trouble following spoken diaglogue, especially news broadcasts. If I read a story and then hear it on the news it seems to gel better.
It’s quite frustrating. I can fake it pretty well and being an underachiever has been a result. I’ve always done well on tests but it gives me a lot of anxiety. I often wonder if I would have chosen a career with greater responsibilities if it weren’t for these ‘hidden’ difficulties.
I’ve stayed away from having to know great bodies of knowledge.
A magic pill would be nice.
Hello, my friends! Is anyone out there developing shoulder problems? Anything from thoracic outlet syndrome (TOS), to “frozen shoulder”, to deltoid contractures, to “fibrotic bands”? I believe that is what is happening to mine, and I’m trying to decide if I should have the bands cut or not… Yikes. It looks like this occurs secondary to chronic inflammation (yup, that would be us!), if not due to trauma. Does anyone have a GREAT orthopedic surgeon, or any experience with fibrosis of the shoulder? It looks like I have a small rotator cuff tear, too, but I think it is secondary to the fibrotic contracture (I’m guessing). I believe that many of us are prone to developing fibrosis of inflamed muscles. Anyone experiencing this? Big hug, Diana
Absolutely…I’ve always had neck and back pain but now in the last 5 yrs. I’ve had shoulder pain into the deltoids and teres muscles and deep in the joints. 5 yrs. ago it was my right shoulder and it took about 3 yrs. to heal. Now it’s my left shoulder and it feels worse than the right, like a tear. Nothing helps. My calves feel similar. I feel like my muscles are ‘drying up’. When I make a fist and then let it go, my fingers hold the shape of the fist. If I flex my toes hard, they will cramp. My back has been seizing top to bottom about once a week.
Is there something I can try now? Is there a nutritional component?
It looks like you’ve figured it out since you posted this as I’ve seen you respond to other posts? Sometimes I can look right at a button and not see it as the thing I was looking for. Hope it’s not too frustrating.
I think it did help and feels like it’s tracking better which is huge. I think the nerves need to heal as it’s been out for a long time. Years ago I had a posture bra and I can see if I can find it again. I tried to pop my shoulder back into place with a similar move squeezing the elbows together and it felt good and popped a little but it didn’t help really. ah well..
Chiropractors aren’t detecting these things which is disappointing. It is what they do after all.
I found it but it wasn’t under the list of videos but in the boxes of additional videos that pop up after you watch one. hmmm
I think it worked! and hope it will alleviate the back eventually.
If you figure out the shoulder, I’d be excited as that hurts even worse.
If I figure something out I’ll let you know. My other shoulder was helped by projecting my elbow forward (as if pointing with it) and pressing against something as I relaxed the shoulder. It’s not working for this shoulder and I’m thinking it may be a tear.
I can’t WAIT to check out that technique.
I just tried to find the right video, but I did not see it.
Do you have the exact title or the page? I think you have 4 pages of videos.
I’ll look again too. Thanks for the support.
Didn’t mean to post this in POTS, sorry.
I wanted to comment on the idea of massage downward on the legs. I’m a massage therapist and it’s better to massage upwards to protect the valves in the legs. Here is brief description that I hope is helpful.
“Blood flow in the veins below the heart is helped back up to the heart by the muscle pump. The walls of the veins are thin and somewhat floppy. To compensate for this many veins are located in the muscles. Movement of the leg squeezes the veins, which pushes the blood toward the heart. When the muscles contract the blood within the veins is squeezed up the vein and the valves open. When the muscle is at rest, the valves close helping to prevent the backward flow of blood. This is referred to as the muscle pump.” This description is from a support hose company but it works 🙂
Hi mother1991, I had to chime in on the Tempurpedic mattress. Everytime I get into bed, I think “I love this mattress”! 🙂 I sprang for the adjustable bed, too. I got it when my hip was subluxated but no one figured out what was going on, so sleep was hard to come by. I would wake up every time I rolled over. But with the Tempurpedic, I didn’t need to roll over! The other benefit was that my husband could be doing cartwheels on his side of the bed and I wouldn’t feel a thing. I will NEVER again take a good night’s rest for granted. FOR SURE! 🙂
My hip is subluxed I’m certain. How did you get it adjusted? I went to two chiropractors and they couldn’t detect it. Their tests for leg length and muscle responses don’t work on me. I put a 15 pound weight on the femur along the ITB for a few minutes and that helped a little.October 13, 2012 at 7:05 pm in reply to: Hypothermia? Bloodwork. Doctor cooperation. Diagnostic Proof. Foolproof diagnostics? #3054
Thanks. It’s amazing to have this website. I don’t Facebook or blog or tweet..not my style. But this I’ll do 🙂
I don’t seem to be as fatigued as I was in years past but the worsening weakness seems relatively new..only a few years. I think it’s the inconsistency that’s mind boggling.
Hard to match cause and effect when determining what’s helpful.
Fatigue could be better from not pushing myself as hard and better self-care.