35 replies to this topic

[cathie]

I felt I had to endure it for the 6 months as I was told otherwise I'd be put in a nursing home. I was told when I first was admitted to hospital with this. That and it got me out of the house 3 times a week.

I've been playing facebook games and listening to music. Been trying to get some sleep since I got home from physio and had 30 mins last night. Can't take pain killers because then I'll wake up in a few hours. So it looks like no sleep again tonight. Will try to get into see GP if no improvement in the morning. Thinking about making something to eat and watching a dvd. Have to not wake up housemates and a parent (not mine) with whatever I do. Trying to stay occupied.

The spasms are probably due to treatment today, but I get them sometimes for other reasons such as I need to move or something is not right somewhere.

Keep up with the rehab for now, just because I had a bad experience doesn't mean it will continue to be the same for you, you may find it actually is helping down the track. I know that hydrotherapy helped me a bit with the pain, spasms and trunk control (definitely, I stopped falling over sideways). The second physio I had was really good and actually listened to me and treated for what he saw was happening, not any diagnosis (or lack thereof) there was. He worked with me to improve my balance and the muscle mass in my legs and was also the one that was pissed off with my old GP for not filling in the forms to get funding for a w/c.

I have almost resigned myself to the fact I'll never have an explanation as to the problem or prognosis (until someone gives me false hope), but instead I now look to what I can do to improve my situation. What can I do to make this better? I thought I would give physio another try because you never know it could help this time. I am trying to find a way to get to the only heated swimming pool so I can go back to doing hydrotherapy in my own time and start swimming to try and keep fit as I've had a huge battle with my weight (just lost over 50kg in the last 2 years as I was told it would help). So instead of wondering why things are, look at what you can do about it.

Sorry if I sound preachy, but I've also had a huge struggle with depression and I have to talk my way out of it. I feel for you.

[mellowgator]

i don't know if this was addressed the posts were so long i didn't read them all. but i have a quickie and i have the fold down push handles and i like them a lot. it's great having them when the need arises.

mellowgator

[Laughing_Lizard]

Thanks mellowgator, no prob not reading it all, kinda gone miles off topic anyway. what are fold down push handles? I have absolutely no idea what they are but do sound interesting

cathie I'm not going to give up physio/hydro but just wondering if i'm better off doing it myself than this way. i am getting results with what i'm doing myself, very slow but it IS working & this leg thing's just so scary if it goes backwards again. basicly it seems that due to lack of movement/circulation etc the bones jsut disintergrate & the limb therefore totally deforms & becomes useless & needs amputation, often after about a year from first presentation (for me that was beginning of October) most commonly they put people under a general anasthetic to do physio due ot the level of pain involved in moving it. I've managed to get it up to full up down movement & a little side to side (that's where i'm working on right now) have also increased the area that can be touched without pain & decreased the level of pain if it's accidently touched. the weight bearing i've temperarily given up trying to improve, focusing on the other 2, with the intention of returning to weight bearing attempts once those are looking good. physio's looked at it & said weight bearing is the biggest issue so that's what we're going to work on & is i guess pushing me to a similar level as the other 2 things on weight bearing without realising that it's taken over 6 months of daily work to get the other 2 where they are & i don't know if i can get this through to her, she's jsut saying the longer you don't weight bear on it the less muscle tone you'll have & the longer it will take to walk again. also no explination for being unable to increase the number of repetitions on the other knee & unless we can figure that out it only takes me back to April in mobility anyway which really doesn't help so it just seems insaine to do things that create a significant chance they're going to need to amputate with no genuine signs anything's going to help me walk anyway. other thing with this CRPS is it spreads!!!!! mine was starting to spread when i took control of the physio myself, i managed to stop the spread over the next 6 weeks or so & stabilise it & then turn it around (with a LOT of hard work) if it spreads, most commonly it's the opposing limb effected, but then if still not brought in check it can spread to other limbs AND eyes!!!!!! I just feel the stakes are too high! fine for the physio to sit there & say do this & that, but she's not the one that will have to live with the results if her treatments don't work!

anyway am still in agony today tried to doze & meditate through the pain all night (read mostly toss & turn & scream & cry) i think i did sleep for a few patches, only about 5 minutes or so at a time so hard to tell if i did or not, eyes got a rest at least. am not trying to keep down my vitamins & stuff (diet's so restrictive i need to have a cocktail of tablets each day) & then i have to go out to a potentually really possitive, but still the same dealing with people who don't get it drama. have been offered a housing place that looks great! today we look at it. my allergies are half the reason for all my symptoms though & this place is newly painted & new carpets, so will definately get headaches & stuff from that, just a question of how bad the reaction will be. last place i looked at effected me to the point that i lose use of my fingers for 2 months plus no use at all of my legs (not that that mattered/effected anything). so hopefully today will be good news, but might not be back on here for a while if i do react badly to the place. fingers crossed!

how are you this morning cathie? have the spasms settled? & did you see/going to see your GP? & if you do, can your GP actaully do anything to help? i tend ot stay home if sick figuring my GP can't actually do anything anyway, i guess yours may be more inclined to do the wheelchair thing if he keeps seeing you at your worst though, so worth it if that happens!

anyway i think i'm probably making less sense than usual this morning, feel so tired! think i'm going to stop writing now, go & have another toss & turn & scream then attempt to get dressed & by then it should be time to go. appointment with house today is 1.30pm. hope you've got less pain & spasms today than last night

[cathie]

I had no sleep last night. did take pain meds and then puked them back up. crashed at about 10 this morning. Woke up at 3.30. Things no better pain/spasm wise today. didn't get to GP. Couldn't get there anyway, having a hard enough time just getting to the loo. my housemate's mum is worried and doesn't want me to go back to this physio, however does want me to go to the Emergency Department (I wouldn't go to the one here unless I was dying). I will try to get to my GP tomorrow to make her happy, even though I know he will keep saying there is nothing that can be done. One of the problems I have is that I have run out of pain meds to try. I am allergic to all the ones they want to try me on (anti-inflammatories are well known for causing asthma attacks. I have had severe reactions requiring hospitalisation every time they've tried me on these meds) and have a huge list of drug reactions with anaphylaxis and seizures as the result.

How did your house inspection go?

Sorry if I'm not making sense, hands not working properly and distracted by spasms/pain/tiredness.

[mellowgator]

 Laughing_Lizard, on Jun 16 2010, 03:13 AM, said:

Thanks mellowgator, no prob not reading it all, kinda gone miles off topic anyway. what are fold down push handles? I have absolutely no idea what they are but do sound interesting

cathie I'm not going to give up physio/hydro but just wondering if i'm better off doing it myself than this way. i am getting results with what i'm doing myself, very slow but it IS working & this leg thing's just so scary if it goes backwards again. basicly it seems that due to lack of movement/circulation etc the bones jsut disintergrate & the limb therefore totally deforms & becomes useless & needs amputation, often after about a year from first presentation (for me that was beginning of October) most commonly they put people under a general anasthetic to do physio due ot the level of pain involved in moving it. I've managed to get it up to full up down movement & a little side to side (that's where i'm working on right now) have also increased the area that can be touched without pain & decreased the level of pain if it's accidently touched. the weight bearing i've temperarily given up trying to improve, focusing on the other 2, with the intention of returning to weight bearing attempts once those are looking good. physio's looked at it & said weight bearing is the biggest issue so that's what we're going to work on & is i guess pushing me to a similar level as the other 2 things on weight bearing without realising that it's taken over 6 months of daily work to get the other 2 where they are & i don't know if i can get this through to her, she's jsut saying the longer you don't weight bear on it the less muscle tone you'll have & the longer it will take to walk again. also no explination for being unable to increase the number of repetitions on the other knee & unless we can figure that out it only takes me back to April in mobility anyway which really doesn't help so it just seems insaine to do things that create a significant chance they're going to need to amputate with no genuine signs anything's going to help me walk anyway. other thing with this CRPS is it spreads!!!!! mine was starting to spread when i took control of the physio myself, i managed to stop the spread over the next 6 weeks or so & stabilise it & then turn it around (with a LOT of hard work) if it spreads, most commonly it's the opposing limb effected, but then if still not brought in check it can spread to other limbs AND eyes!!!!!! I just feel the stakes are too high! fine for the physio to sit there & say do this & that, but she's not the one that will have to live with the results if her treatments don't work!

anyway am still in agony today tried to doze & meditate through the pain all night (read mostly toss & turn & scream & cry) i think i did sleep for a few patches, only about 5 minutes or so at a time so hard to tell if i did or not, eyes got a rest at least. am not trying to keep down my vitamins & stuff (diet's so restrictive i need to have a cocktail of tablets each day) & then i have to go out to a potentually really possitive, but still the same dealing with people who don't get it drama. have been offered a housing place that looks great! today we look at it. my allergies are half the reason for all my symptoms though & this place is newly painted & new carpets, so will definately get headaches & stuff from that, just a question of how bad the reaction will be. last place i looked at effected me to the point that i lose use of my fingers for 2 months plus no use at all of my legs (not that that mattered/effected anything). so hopefully today will be good news, but might not be back on here for a while if i do react badly to the place. fingers crossed!

how are you this morning cathie? have the spasms settled? & did you see/going to see your GP? & if you do, can your GP actaully do anything to help? i tend ot stay home if sick figuring my GP can't actually do anything anyway, i guess yours may be more inclined to do the wheelchair thing if he keeps seeing you at your worst though, so worth it if that happens!

anyway i think i'm probably making less sense than usual this morning, feel so tired! think i'm going to stop writing now, go & have another toss & turn & scream then attempt to get dressed & by then it should be time to go. appointment with house today is 1.30pm. hope you've got less pain & spasms today than last night

hi laughing lizard,

it was item 3 on your wheel chair wish list. apparently a quickie rep didn't think his chairs had this as an option. they are push handles that fold down when you don't need them so people wont grab your chair when you don't want the help but you can flip up if they are needed. they're really nice.

mellowgator

Edited by mellowgator, 16 June 2010 - 11:22 PM.

[adam_downunder]

Wow! This thread has come along way from where it started!

To go back to the original question about wheel size.. from my experience here in Australia, I would have said that 24" is the most commonly ordered size, although I myself am rolling on 25". Why? Well, I'm quite tall, and we found that 25" gave me a little extra height and a more efficient push. I guess it comes down to how long your arms are what you need out of your chair. I have used 24's also and an inch doesn't sound like a lot but when it came to bringing them into the car, they felt like they were about 5" smaller!

Where in Aus are you? I might be able to help you out. Check out the website below and feel free to get in touch with me if you want to discuss anything.

Cheers,

Adam