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Pain in both hips
I have been having pain in both of my hips, all the way around. Last night, it hurt more to bear weight but I took some Advil and eventually fell asleep. It was gone this morning but is getting worse by the hour. Moving or anything else doesn't seem to make it worse-it's just constant and achy. Has anyone heard of this?
Thanks!
Rhea
Thanks!
Rhea
Don't get me started with the eye exams lol...some abnormal then normal. Been through eye doc and retina specialists and not much is going on other than mild hypertensive changes, YET I STILL CAN'T SEE! Been referred to neuro ophthalmology, but they couldn't see me until OCTOBER! Really? Ok, I'll just go blind in the mean time. Blurry vision far and near, floaters, ghost images, SEVERE photophobia (light sensitivity). Have had 2 peripheral vision tests...1 normal, 1 abnormal...every other eye exam is normal, the others vary in results. I could go on, but it hurts my eyeballs to type!
I thought I was the only one that got discouraged with a 'normal' test!
I was referred to an eye specialist because I was having horrible eye pain/pressure, double vision, and bright flashes of lights that looked like tiny flies were all over my vision. At the apt. he said there were no problems with my eyes and eluded that I was making the symptoms up!
About a year later I was getting my annual eye exam. I checked double vision and nothing else (cause I did not want to look like a hypochondriac - yet again). This eye doctor said I had strabismus. I told him the story of the previous eye doctor. He had never heard of Chiari, but assured me he would do plenty of research about it.
I am assuming you probably know what a relief it was when he could clinically back up at least ONE of my vision symptoms!
I was referred to an eye specialist because I was having horrible eye pain/pressure, double vision, and bright flashes of lights that looked like tiny flies were all over my vision. At the apt. he said there were no problems with my eyes and eluded that I was making the symptoms up!
About a year later I was getting my annual eye exam. I checked double vision and nothing else (cause I did not want to look like a hypochondriac - yet again). This eye doctor said I had strabismus. I told him the story of the previous eye doctor. He had never heard of Chiari, but assured me he would do plenty of research about it.
I am assuming you probably know what a relief it was when he could clinically back up at least ONE of my vision symptoms!
My joint are a MAJOR problem. Seeing a rheumatologist but no Dx so far. Blood work and X-rays seem fine. She thinks I may have fibro too but my joints, especially shoulders, hips elbows and knees have SEVERE pain. My shoulders and hips are the worst. I feel like someone is ripping both my arms off, God forbid I lay on one wrong. They don't feel I have EDS due to lack of hyper mobility but have referred me to a geneticist to be sure. I'm just not sure when I can find time to go to all these doctors. I have to travel AT LEAST an hour to every appt...sometimes more. I feel the my shoulders, hips and even my pelvic bone partially dislocate at times but never fully. The pain is ridiculous...especially my shoulders since I'm constantly using my arms. My arms also always feel fatigued and weak and hurt but neuro exams don't show true weakness. Even laying down, trying to get them in a position where they don't feel like I've been stirring thick brownie batter for 12 hours is a huge challenge.
I get very discouraged with each "normal" test that comes back. IRS like living the Chiari nightmare all over again. I KNOW something is wrong, but no one can figure out what!
I get very discouraged with each "normal" test that comes back. IRS like living the Chiari nightmare all over again. I KNOW something is wrong, but no one can figure out what!
COMMUNITY LEADER
When my hips pop they hurt too...and my shoulder....
Weird how we r constantly changing and finding new issues...sigh....
Keep me posted : )
Newest symptom: my hips are popping. My whole body pops, but when my hips do, lately, they HURT! I was told by my acupuncturist that he thinks it's my SI joint and that I have more lax joints. Sooo... with new development, I may actually fit into another category of EDS. Maybe only one, but maybe combined. So I should hear back from the office Monday because they decided to MRI just to rule out a tear. I'll keep you updated!
Thank you!!
Thank you!!
COMMUNITY LEADER
I am sure by this time u have appealed the decision to deny....I just am flabbergasted....so I can understand ur frustration.
Wish I had a way to help....mayb u need to fund raise to pay for the testing....???
I'm really not sure why they won't cover any testing for that type. Especially the vascular one!! I'm so tired of fighting my insurance company, and my rheumatologist office staff is not helping. I've been fighiting since January. Frustrating!
COMMUNITY LEADER
If ur joints pop out of joint u most likely had a form of EDS and u can have joints that sublex with vascular type....have u tried to see a rheumatoid Dr?
Why won't ur INS cover testing for something u might have?....
I have popping of those joints too, but they don't lock up. My rheumatologist suspected vascular EDS, but I cannot afford testing, as my insurance will not pay any of it. She said I did not seem to have the other types.
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