I don't know where the hell my mine has been, but I think I really needed the blog break. I had been popping in from time to time to read other peoples blogs, but I needed to step back a bit I guess.
Anyhow, what's new with me? I'm got done w/PT for general joint crap & now may be heading back for my neck, stupid neck. I am trying to go to the water arthritis class at the gym, hope to do that 2x per week. I modify 90% of it, but the teacher is fine with that.
I got my orthotics & the one sucks so I doubt I'll be wearing them. 2 castings & 4 appts for 1 ok & 1 useless orthotic, lol.
My right knees pops a bit out all the time now so I am going next Friday to see on ortho for a consult to decided if surgery is needed. Dunno if I'd do surgery right now, but I'm up for seeing what ideas this doc might have.
I'm tapering down my Neurontin, I'm sick of the weight gain & I think that's a big knee pain/sublux issue. I was at 900-600-900 & got down to 600-600-600 & am switching to 600-300-600 this week. My goal is 300-300-300 or 300-0-600, something around that. I have gained 25lbs in 18 months & that's got to be killing my knees. My neuropathy is coming back up with these lower doses, but I think I'd rather have the neuropathy.
I'm not dieting, cause I suck at it, but I have cut soda out & am just trying to nibble snacks so much. Also trying to be sensible with what I eat. Like I still get take-away, but last night I got chicken sandwich instead of a burger or if we get drive-thru Toad & I will split a burger & each have our own small fry. Even if I don't loose much, that's ok so long as I stop gaining.
Showing posts with label dislocation. Show all posts
Showing posts with label dislocation. Show all posts
20 February 2009
02 December 2008
Got some things accomplished & Migraines & Headaches
Well 1st up I got a few things checked off my medical to do list. I did get in for the heart echo & thankfully things look good with that, just some MVP. My PT got tired of the hoops the insurance company was making us jump thru, so she told me they have a fund for people who don't have insurance or who have crappy insurance & need DMEs & that she would get me crutches from that fund. They've come in & I should be getting them this afternoon. Also had the casting done for my orthotics, should take 2 weeks for those to come in. We'll see how those go & if needed we'll adjust or make new ones. Hopefully they'll work fine. So the only things left are finger splints & knee braces. Plus I still have 1 of my migraine types totally uncontrolled to work on.
Which brings me to the second topic today, headaches. It seems I don't mention my other medical issues because EDS takes up so much of my mind. I was dx'ed with migraines without aura at 14 & was put on Midrin, didn't stop them, but did help me be able to fall asleep so I could ignore them & I thought that was a very good thing. When I was 18 it was decided that since I was having 4-10 of them a month I ought to be on a preventive, enter Inderal. That was an evil med, I had the most horrific dreams I have ever had & I had a nightmare disorder when I was young. So I stopped that ASAP & went back to my Midrin. When I was 19 or so my sister was put on this miracle drug, Imitrex. She gave me 2 of them to try & they would really reduce my migraines to next to nothing. Somewhere around 18 I discovered I did have an aura, it was a buzzing in my ears, it was my aura for about 2 or 3 years, but then while I would still get it, it no longer was an aura, but an irritating thing. When I was 24 or so I got my first visual aura, that was strange. I still get my aura migraines & Imitrex still kicks their butt. I get 1-4 a month of these since I figured out aspartame was a trigger, before that it was 4-8 a month cause I just about lived on Diet Coke. I miss Diet Coke a lot, haven't had it since early summer.
I also get aura only migraines, there is no headache just the aura & it will last for ages, then I get this odd pressure feeling in my head, but it doesn't hurt. No clue what that's all about, but I don't much care for it. Those a pretty rare, few a year.
I also get 2 other headaches, my everyday headache & my nasty assed common headache. The everyday one is a low level headache that I can, for the most part ignore. I've had it for a very long time. I know by the time I was 14 I lived on Advil, I was taking as many as I could afford. Some days I would take 20, others 100. I know it was there when I was 12, before that I don't think it was everyday, but I know I had nasty headaches all the way back to kindergarten & they were common, but I don't think they were everyday. It's at the back of my head near the base of the skull. Sometimes (read 2-8 times a month) they will switch, with no warning they get worse. It's as though someone is turning a dial up, they go from 2-4 on the pain scale to 7-9. My neuro says these are migraines also. I'm still not sure I believe her on that. I has a MRI & structurally things seem fine. I from time to time wonder about Chiari, but my brain butt (I can never remember the correct name for that bit that effects Chiari, sorry) is way high up on the laying down, so there is no way a Dr is going to order a sitting up one. I also wonder if it's not the tiny bones up at the top that are just under the skull dislocating. I have some ugly click & snap noises with all my neck & head movements. So right now I am just marking on the calendar each day I have a headache & each day I have a "migraine". I don't take anything for the daily headaches. I take Ultram for my EDS pain & I just take an extra one when I get the "migraines" & if it's there at bedtime still I take a Flexeril. Nothing makes either go away, the Ultram does nothing for the everday headaches & it only turns the "migraines" down a notch or two. The Flexeril does help both a small bit.
Anyhow there is my history of headaches.
Which brings me to the second topic today, headaches. It seems I don't mention my other medical issues because EDS takes up so much of my mind. I was dx'ed with migraines without aura at 14 & was put on Midrin, didn't stop them, but did help me be able to fall asleep so I could ignore them & I thought that was a very good thing. When I was 18 it was decided that since I was having 4-10 of them a month I ought to be on a preventive, enter Inderal. That was an evil med, I had the most horrific dreams I have ever had & I had a nightmare disorder when I was young. So I stopped that ASAP & went back to my Midrin. When I was 19 or so my sister was put on this miracle drug, Imitrex. She gave me 2 of them to try & they would really reduce my migraines to next to nothing. Somewhere around 18 I discovered I did have an aura, it was a buzzing in my ears, it was my aura for about 2 or 3 years, but then while I would still get it, it no longer was an aura, but an irritating thing. When I was 24 or so I got my first visual aura, that was strange. I still get my aura migraines & Imitrex still kicks their butt. I get 1-4 a month of these since I figured out aspartame was a trigger, before that it was 4-8 a month cause I just about lived on Diet Coke. I miss Diet Coke a lot, haven't had it since early summer.
I also get aura only migraines, there is no headache just the aura & it will last for ages, then I get this odd pressure feeling in my head, but it doesn't hurt. No clue what that's all about, but I don't much care for it. Those a pretty rare, few a year.
I also get 2 other headaches, my everyday headache & my nasty assed common headache. The everyday one is a low level headache that I can, for the most part ignore. I've had it for a very long time. I know by the time I was 14 I lived on Advil, I was taking as many as I could afford. Some days I would take 20, others 100. I know it was there when I was 12, before that I don't think it was everyday, but I know I had nasty headaches all the way back to kindergarten & they were common, but I don't think they were everyday. It's at the back of my head near the base of the skull. Sometimes (read 2-8 times a month) they will switch, with no warning they get worse. It's as though someone is turning a dial up, they go from 2-4 on the pain scale to 7-9. My neuro says these are migraines also. I'm still not sure I believe her on that. I has a MRI & structurally things seem fine. I from time to time wonder about Chiari, but my brain butt (I can never remember the correct name for that bit that effects Chiari, sorry) is way high up on the laying down, so there is no way a Dr is going to order a sitting up one. I also wonder if it's not the tiny bones up at the top that are just under the skull dislocating. I have some ugly click & snap noises with all my neck & head movements. So right now I am just marking on the calendar each day I have a headache & each day I have a "migraine". I don't take anything for the daily headaches. I take Ultram for my EDS pain & I just take an extra one when I get the "migraines" & if it's there at bedtime still I take a Flexeril. Nothing makes either go away, the Ultram does nothing for the everday headaches & it only turns the "migraines" down a notch or two. The Flexeril does help both a small bit.
Anyhow there is my history of headaches.
14 October 2008
P/T with Ehlers-Danlos & Poland's Syndrome
Yesterday was my 1st PT appt & my therapist (here forth known as K) was pretty nice, plus pretty good I think. She did have a student with, who I really just didn't care for the personality of. I asked right off if she was familiar with EDS & with PS, she said she knew about the hypermobility issues with EDS & asked if I had an vascular issues. As for the PS she asked if I had any webbing & knew it mostly has a hand issue, I told her about the missing muscles as well. I told her I was up for trying anything she wanted to try as long as she understood that if I ask to stop she respect that & understood that resistance stuff wasn't going to be an option. She said of course, you could end up with a dislocation or worse otherwise.
She asked me to move each body part thru it's normal range of motion & as I would move she kept saying "Ok, stop, stop that's far enough." I kind of chuckled after 2-3 of those & said I was sorry, but I had no clue what normal was. Then she placed her hands on a few joints while I moved them & she could feel & hear the crepitus & the student across the room could hear it. That was a bit embarrassing. On my other knee she could feel it slide out & back in to joint & I didn't even realize it had done it. That was my right knee, aka the world famous dump me on the ground all the time knee, so I guess I shouldn't be shocked. She then had me push against her to check over all strength & had me stand on each leg in turn & stand with my eyes closed. My balance isn't 100%, but it's not to bad.
I got to wander up & down the hall, I swing my upper body too much, but I knew that. She hated my hurry walk, (sometimes you have to haul ass when you've got a 3 yr old) which consists of locking my right knee turning my hip fully sideways & locking it then walking fast. I talked to her about the problems with my neck & with how I can't turn to the sides well, that my head doesn't turn much. Well I found out that it turns just fine, I guess it's a totally normal rage of motion, it just doesn't hypermobile anymore.
We did a few exercises that barely counted as moving & I am to practice them at home. She is putting in for me to go over to OT for the assorted "toys" & because PT doesn't do hands, that's OT. She also loves the idea of adding in water PT & is fine with doing that while Toad is in school, which obviously is kick butt for me. :D We will do more land PT for a bit first, then add that. We are doing 1x per week right now.
She asked me to move each body part thru it's normal range of motion & as I would move she kept saying "Ok, stop, stop that's far enough." I kind of chuckled after 2-3 of those & said I was sorry, but I had no clue what normal was. Then she placed her hands on a few joints while I moved them & she could feel & hear the crepitus & the student across the room could hear it. That was a bit embarrassing. On my other knee she could feel it slide out & back in to joint & I didn't even realize it had done it. That was my right knee, aka the world famous dump me on the ground all the time knee, so I guess I shouldn't be shocked. She then had me push against her to check over all strength & had me stand on each leg in turn & stand with my eyes closed. My balance isn't 100%, but it's not to bad.
I got to wander up & down the hall, I swing my upper body too much, but I knew that. She hated my hurry walk, (sometimes you have to haul ass when you've got a 3 yr old) which consists of locking my right knee turning my hip fully sideways & locking it then walking fast. I talked to her about the problems with my neck & with how I can't turn to the sides well, that my head doesn't turn much. Well I found out that it turns just fine, I guess it's a totally normal rage of motion, it just doesn't hypermobile anymore.
We did a few exercises that barely counted as moving & I am to practice them at home. She is putting in for me to go over to OT for the assorted "toys" & because PT doesn't do hands, that's OT. She also loves the idea of adding in water PT & is fine with doing that while Toad is in school, which obviously is kick butt for me. :D We will do more land PT for a bit first, then add that. We are doing 1x per week right now.
11 October 2008
It just gets old
Like many towns during the fall we have an art fair. I went to mine today, it's small just 2 blocks long & only 4 blocks from my house. My hip wobbled a bunch & my knee when all the way out & then kindly went right back in again. I am tired of this, I just want to be able to walk somewhere & not have things pop out of place, to not have to increase my pain meds. I want to be able to buy my giant caramel-pecan-chocolate covered apple & a nice ceramic mug for tea & a glass bead home with out my shoulder being in agony.
I guess I'm still getting thru my stages of adjustment. Blah, at least my mug is pretty.
I guess I'm still getting thru my stages of adjustment. Blah, at least my mug is pretty.
09 October 2008
My Spine
Something, or rather as I suspect a few somethings, are out of place in my neck. I've got 1 do go back in place, but I have to admit reducing dislocations in my spine kinda creeps me out. It's my spine! You should be moving bits of bone around when they are next to your spinal column, what if you broke something in there? Eek, it just seems wrong, but on the plus side it feel better.
Tomorrow I got for my first PT appt, hopefully I get someone who is willing to learn about EDS. I'm the sort of person who always assumes the worst case & that way if it's crappy I'm not disappointed & if it goes well I get to be pleasantly surprised.
I wonder if you can get arthritis of the scapula. Almost any movement of my right shoulder causes some wicked discomfort & tons of clicking there. Since it's not a joint I'm wagering you can't, but I'd love to know what that clicking is. I hope it's not & that can get fixed up somehow. It's my left arm (aka the good arm).
I have decided once I run out I am no longer going to take my potassium supplement. It gags be so bad. Plus I will be switching my multi-vit to something a little stronger. I currently take a children's chewable because it doesn't have iron, iron kills my tummy & binds me up so seriously it's obscene. My mom suggested checking a few brands that might not have the iron in, plus I am going to pick up some more D. I think I'm going to do 400 3x per day.
I also have to decide what I'm going to do about the Neurontin. I was at 900-600-900 for dosing. I dropped to 600-600-600 & my neuropathy is back & it's bad, but I don't feel so brain fuzzed. I've been putting up with the neuropathy to get a break from the fuzzy, but I think I'm going to have to up the dose again. I hate the fuzz, but I can't function with the neuropathy going on, so it's just as debilitating as the fuzz.
Tomorrow I got for my first PT appt, hopefully I get someone who is willing to learn about EDS. I'm the sort of person who always assumes the worst case & that way if it's crappy I'm not disappointed & if it goes well I get to be pleasantly surprised.
I wonder if you can get arthritis of the scapula. Almost any movement of my right shoulder causes some wicked discomfort & tons of clicking there. Since it's not a joint I'm wagering you can't, but I'd love to know what that clicking is. I hope it's not & that can get fixed up somehow. It's my left arm (aka the good arm).
I have decided once I run out I am no longer going to take my potassium supplement. It gags be so bad. Plus I will be switching my multi-vit to something a little stronger. I currently take a children's chewable because it doesn't have iron, iron kills my tummy & binds me up so seriously it's obscene. My mom suggested checking a few brands that might not have the iron in, plus I am going to pick up some more D. I think I'm going to do 400 3x per day.
I also have to decide what I'm going to do about the Neurontin. I was at 900-600-900 for dosing. I dropped to 600-600-600 & my neuropathy is back & it's bad, but I don't feel so brain fuzzed. I've been putting up with the neuropathy to get a break from the fuzzy, but I think I'm going to have to up the dose again. I hate the fuzz, but I can't function with the neuropathy going on, so it's just as debilitating as the fuzz.
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