I am getting so fed up with being sick and tired all the time...
I guess today is just a bad day, to put it mildly. I have been dealing with a nasty pain flare now for about a month and there doesn't seem to be any end in sight at the moment. I am having some weird symptoms in my knee that can be very frustrating and painful. Whenever I bend my knee, I get excrutiating pain in the knee cap area that literally brings tears to my eyes. I have also noticed that my knee clicks a lot when I move it and it feels like my whole knee is really unstable. Me and my mum went out yesterday for the day and my knee gave way about 6 times which is making it very hard to walk as I am losing my balance quite a lot.
All of the knee issues started after my last Physio session about a month ago. My Physio's have been using a splint to try and correct my leg and foot position and in the last session, they got me walking in it but my leg kept giving way and my knee was rotating to the side even more. I remember complaining of really bad knee pain and my mum also said to my Physio's that my knee was twisting.
My mum called my physios last week to keep them informed on how I was doing and they said that the splint probably hasn't caused all of the problems I am havin. It seems to be too much of a coinscidence though that the pain and other symptoms started right after my last physio session!!
We were adviced to go and see my GP to get some anti-inflammitaries and to rule out any other possibilities, especially seeing as though the pain isn't what you usually get with RSD. My mum called this morning and we can't get an appointment until the 29th June which is over 2 weeks away!! I can't get in to see my Physio's until next Wednesday either so I guess this is something I am going to try and cope with until then...
I just want and need some relief from all of this!!!! I am off School again today as I just don't feel well and know there is no way I would be able to go and concentrate on my studies in this state!! I HATE missing School all the time and need to do something to stop me from being off school so much as from September, there is no way I can keep missing this much amount of school seeing as though I will be starting College and doing placements etc. I am lucky at the moment that the school centre understands my RSD and will allow me time off but i'm sure that will all be different when I start college!!
Life can really suck sometimes...
Tailing Trout at Little Pine Lagoon this morning.
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Only a light northerly blowing as I fished Tailers Shore.
Trout were tailing but illusive. Two other anglers landed fish, one a good
21/2lb. The rest of us...
11 years ago
9 comments:
Hi Alicia!
I encountered your website when you gave a comment on Movement Disorder-Neurotalk Community. I backread all your articles (except that tagged thing) and I must say you write very well.
I got into this Neurotalk Community as eversince my accident last September 6, 2003, I was left disabled, deaf, and I couldn't control my hands which the neurologist from the Philippines termed as Myoclonus, or more specifically, Lance-Adam's Syndrome. I couldn't control the right side of my body, particularly my right hand. While I could control my left hand, I couldn't control the tips of my fingers so I eat like a pig. I've read about the Lance-Adam's syndrome and the symptoms don't appear to match mine.
But anyway, I can live with this. My main concern is normalizing my sleep which now averages only 2 hours a night. Can you imagine that? This has been going on since around 2006. So my eyes are really sore, but I still couldn't sleep.
I found that the side-effect of a muscle-disorder drug would be what affects my sleep.
However, my problems are no match compared to yours. I learned about RSD and seen the video clip you posted on youtube.
Anyway, you're a very strong girl. People will certainly get a lot of inspiration from a very courageous woman as you.
Sorry to read you are having such a rough time lately :( Just wanted to say hi! and send you some (gentle) hugs. Hope you feel much better really soon!!
xx
Thank you both so much for your kind words and support - I really appreciate it and it was much-needed!1
Pian - I'm SO sorry to hear about your accident and everything you have been through((hugs))!! I give you a lot of credit for saying you can live with everything that you have going on right now as I know it can't be easy at all - you're amazing!!! I find it hard dealing with the RSD and Dystonia alone but can't imagine how devastating it must be to be deaf as well!! I hope you are able to find something to help you sleep soon. I can totally relate to the sleeping issue. I was up all last night and didn't get a wink of sleep and my body can really tell today but it still doesn't want to go to sleep for some reaason. I haven't been sleeping well for months now and like you, get about 2 hours sleep a night if I am lucky as I am always waking up with weird dreams and pain. Have you tried any sleeping meds to help you with your sleeping? I think we are going to have to talk to my dr about trying some sleeping meds if things don't improve - I really don't want to go on any more meds but can't function on a daily basis without any sleep!
Thank you for popping by and commenting - I really appreciate it and will keep you in my thoughts and prayers!!
Caf - Thank you for the kind words and hugs - I really appreciate them! I hope you are doing well and having many low pain or pain free days!!
Gee. You even have a sleeping problem. Are you really getting only 2 hours of sleep a night?
I've discovered that what works for me is the side effect of a muscle disorder drug.
I was prescribed anti-depressants, but they didn't work for me.
Well, being deaf is not painful.
Yes, I only usually get 2-3 hours sleep a night as I always seem to be waking up from pain and then find it very hard to get to sleep again.
I didn't get any sleep at all last night. I laid in bed for hours hoping to sleep but couldn't so eventually went on the computer and spoke to some friends on IM and browsed the internet. I went back to bed again about 5am hoping to get some sleep but didn't again.
I'm not sure whats going on. I seem to go through phases where for a few months I get hardly any sleep, then I sleep for most of a day and then it's back into the same old viscious cycle. It's like after so long, my body just shuts down and gives in.
Thank you for the suggestion on the muscle relaxant med - will have to look into that. I have been prescribed anti-depressants also but they didn't help me and I suffered from blurred vision which resulted in a fall and a spread of the RSD. I'm not on any sleeping meds at the moment but think we might end up having to look into them if things don't improve.
Take care and I hope you are having a great day!
Oh boy! Anyway, I just want to say I've never met anyone so young and courageous as you. Keep posting!
Hi Alicia
There are some symptoms that you know to be CRPS. Sometimes we assume a symptom is CRPS when it is not. Anything new is worth checking. I treated mouth pain with mirror therapy. It stopped the pain but the pain kept returning. I should have realised that if pain returns then it is likely to have some underlying pathology. Turned out I had an abscess and ended up losing my tooth.
Ask again about your knee. Then make every effort to move normally if told it is CRPS.
Take care and stay positive.
Alison
Also sending hugs your way. I hope that you get some better sleep soon because I know it makes the rest of the symptoms harder to deal with. Keep fighting and hope I can keep you company a few more nights in the next few weeks while I am on break if possible.
I am going to send you a postcard from Australia when I get there.
Lots of love coming your way <3
Thank you all for your lovely comments! I'm trying to stay positive as I know it's really important but it's hard at times, as i'm sure you all know unfortunately!
Jeisea - Thanks for your comment. I don't think the pain in my knee is RSD related as it isn't the usual pain that you get with RSD, it is more of a joint/bone pain. I have an appointment on Wednesday to see my Physio's so am going to get them to have a look at it and we also have an appointment to see my GP on the 29th so at least we have a back-up plan if nothing else works. I just want some relief as I can hardly walk for longer than 2 minutes now. I have been in bed all week other than Wednesday night when we went to see Britney due to the pain. Thanks again and i'll keep you all posted.
Felicia - it was lovely talking to you the other night. Thank you so much for keeping me company, I really appreciate it! I hope you are doing well hun as I know you're having a pretty hard time of it lately also ((hugs))! Take care and hope to talk more soon!!
Alison.
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