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Old 03-31-2014, 01:17 PM
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Thank you for contributing to this. When one person says they have something similar there is still doubt there, when lots say the same thing it makes you feel better that you're normal, that your experience isn't abnormal. I really was worried about it before I got the replies here.
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Old 04-02-2014, 11:49 AM
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The above comment was aimed at RevivingOphelia, sorry I used the quick reply function without realising it doesn't tag the person I replied to.
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Old 04-07-2014, 09:03 PM
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Quick update.

I've been doing great the last week. I'm only using half the usual pain killers I am prescribed. I have been able to see a few friends, I even saw a movie at the cinema (a very rare thing for me with my health as it is). I have not had any problems with cysts in my muscles. Generally things are really great and I'm trying my best to juice every little bit of joy out of it because I know exactly what tends to happen with my condition. These kinds of experiences are rare for people with my condition and sadly what follows is a predictable horrible period.

Still at least I've really been able to enkoy myself this week, and hey maybe I won't be unlucky and have my condition deteriorate. Fingers crossed
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Old 04-07-2014, 11:57 PM
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I wish you well! Hopefully the sun will stay out awhile, so to speak. What did you see? Last week I saw three movies at the cineplex. It really put me behind on my homework but it was worth it.

Last night I watched The Grand Budapest Hotel. Very artsy, really funny as well.

I love movies! For two hours none of my cares can touch me.
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Old 04-08-2014, 12:00 PM
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It's great to hear you're getting some respite from your pain and beautiful weather to boot.
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Old 04-08-2014, 02:07 PM
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Originally Posted by DaveyT View Post
Quick update. I've been doing great the last week. I'm only using half the usual pain killers I am prescribed. I have been able to see a few friends, I even saw a movie at the cinema (a very rare thing for me with my health as it is). I have not had any problems with cysts in my muscles. Generally things are really great and I'm trying my best to juice every little bit of joy out of it because I know exactly what tends to happen with my condition. These kinds of experiences are rare for people with my condition and sadly what follows is a predictable horrible period. Still at least I've really been able to enkoy myself this week, and hey maybe I won't be unlucky and have my condition deteriorate. Fingers crossed
Keeping you in my thoughts. I have had chronic migraines since I was 14 and now also have Huntington's Disease. My HD symptoms include paralyzingly anxiety so severe until I was put on anxiety meds I rarely could get out from my covers, several times a week.
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Old 04-08-2014, 05:36 PM
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Originally Posted by shockozulu View Post
Keeping you in my thoughts. I have had chronic migraines since I was 14 and now also have Huntington's Disease. My HD symptoms include paralyzingly anxiety so severe until I was put on anxiety meds I rarely could get out from my covers, several times a week.
You make me feel like an idiot for complaining. My condition causes extreme pain but it's not fatal (generally) and doesn't affect my movement beyond the pain that slows me down. I get tired and struggle because of the pain so I'm mostly housebound but it's nothing like Huntingtons.

I really think sometimes I should not complain on here. Ok yeah I get a stupid amount of pain but tons of people have worse things.

Today is still a good day, I always take my prescribed dose when I wake up because obviously the medicine is out of my system and the morning is painful. However the rest of the day, at least right now is not too bad (relatively speaking). I know it won't last but just hoping it goes on as long as possible.

I want to avoid using my allowed maximum dose as long as I can.
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Old 04-08-2014, 11:50 PM
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Nothing wrong with complaining, and this is the place to do it! If we felt we couldn't speak out to grip because there was someone in the world that had it worse, then only one person on Earth would get to complain! And that's all he'd ever get done!

I'm really impressed by both you and shockozulu, Davey. You both endure a lot and manage to stay sober. That really shows me I don't have any excuse.
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Old 04-15-2014, 08:55 AM
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Well I hoped it would last longer but today is not a good day. I woke up this morning and everything hurt, even my fingers which is never a good sign. I couldn't hold my tooth brush properly because of the pain. Taking the full dose of my pain meds today, still really hoping maybe this is just one bad day and tomorrow will be better. But now even after the meds typing is a struggle, all my muscle are just stiff and painful.

Oh well, at least I had a good full week with nice weather, flowers and wildlife
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Old 04-15-2014, 03:08 PM
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I'm sorry you're feeling poorly again, Davey. Having a reprieve from constant pain is soooooo fantastic and it can be hard to accept the pain returning.

You sound grateful for the time you had and I hope it won't be long before you have another run of good days.

((( Soft Hugs)))
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Old 04-15-2014, 03:40 PM
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Thanks Received. I've had to use my maximum of meds today and I hate doing that because they make me feel weird, sort of spacey, like I'm not here. But I guess if I used them often that feeling would be normal so maybe it's best I still feel the difference. I always take the max dose when I wake up as that tends to be the worst time. From there I play it by ear and I've found waking up and going to bed are the worst times for pain.

God even now I'm typing and my fingers hurt so much, it sounds so stupid to most people but even the tips of my fingers hurt, my skin feels like it's buzzing, my knuckles hurt and the inflammation makes them go red. My whole body is the same and it's really frustrating because I know the symptoms and this will be getting worse over the next few days. It's horrible how it goes in cycles like this, but maybe those working in research areas will get some clues from this nonsense.

I really hold out hope they can find something that can help people like me.

Sorry for the moan

On the upside I can't feel any cysts forming at the moment. I just have my usual pain, nothing extreme of specific in my muscles.
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Old 04-15-2014, 03:48 PM
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It's nearly midnight here, just taken my last dose of painkillers and I just feel weird. I feel sick and dizzy and not quite present. I'm going to try and sleep but I hoope soon I can reduce the painkillers a bit because I hate when I have to use my maximum dose all day. This is not a way to live.
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Old 04-15-2014, 04:57 PM
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I guess the one advantage of high doses of what I am taking is feeling very tired.

Goodnight to you all.
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Old 04-15-2014, 06:45 PM
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Sweet dreams, Davey. Let us know how you are doing tomorrow.
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Old 04-16-2014, 01:44 AM
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Tomorrow is a new day! I hope you feel better, D.
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Old 04-16-2014, 06:19 PM
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Hey guys, tomorrow is a new day but sadly the new day greeted me with awful pain. It's 2am here and despite using my maximum allowed doses and feeling kind of drowsy becuase of it I can't sleep because I'm in a lot of pain. I hate this, I type on the keyboard and that hurts but I felt I must update this as you guys are so kind to keep track of my progress.

I've had a lot of trouble walking today as the pain was the worst in my hips and knees, I sat outside in the sun but I didn't enjoy it as much as usual. I feel all my muscles and joints are locking up, par for the course with my condition. I just think sometimes I feel as if I have rusty joints. My muscles are a different issue, like elastic that has been stretched to it's limit.

Either way I don't feel great and I'm yusing the maximum dose of my medications. And that's awful because they make me feel weird, sort of spcaey, like I'm not quite here. It's just not nice.
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Old 04-16-2014, 11:41 PM
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That sucks. When you're sore like that is there anything that's still enjoyable? Does watching a movie help distract you?
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Old 04-17-2014, 07:07 AM
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I'm sorry, Davey. Like "Myth" said, THAT SUCKS!

I just pm'd you.
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Old 04-17-2014, 07:59 AM
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Hey guys, I'm afraid that no I can't really do anything to ignore the pain, just try to imagine someone sticking a needle into your leg muscle, you can't really put it out of mind. Over the years I have developed some coping strategies, watching a film and trying to lose myself in it or music can slightly reduce things but it can nenver be ignored. A very hot bath helps relieve some of the muscle pain, this is simply because the pain causes tension and the heat helps release that tension. This is why the pain is usually worse in the winter as well as muscles tighten up even more when it's cold.

Other than that it's just riding it out and hoping it reduces soon so I don't have to continue taking the maximum dose of pain meds. As I told received when I take the maximum dose I have disturbed sleep as I get really vivid nightmares which I've been told are directly related to the opiate painkillers. And as I've said before, I hate this awful fuzzy feeling the opiates cause. It's like I'm not quite here, mentally everything feels slow and my coordination is off. But it's better than the severe pain I guess.

Lol glad to have you guys to complain to, otherwise I think I'd go nuts, or more likely just end up in a bottle again.
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Old 04-17-2014, 10:11 PM
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Yeah, the booze might temporarily alleviate some of the pain but you know the true cost of that temporary reprieve. Hopefully the max dose won't be required for long.
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