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Re: Sick and tired
JenInCincy #171301 04/09/10 02:47 PM
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I've just started to have the pain you are describing. It feels like someone stuck a javeline through my chest and left it there. Makes it almost impossible to move or breath.

I don't remember if you've said, but have you been to a pain clinic or pain management program? I went to a two month program (had to take short term disability) and it really helped me think about the pain differently (most of the time). When you're in a lot of pain, some of what they teach seems stupid, but it really did help me deal with everything better (most of the time).

I do hope you find some relief, but in the meantime, we're here for you.

Re: Sick and tired
mariposa #171305 04/09/10 03:54 PM
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i understand the pain you are feeling, guitarman. i'm having it, too. if you haven't read it already, read the thread "a new day". that's my description of how it feels waking up in the morning.

when i read your posts, it reminds me of conversations my husband and i have had. my husband fixes things, too, just not in the same way as you. you handle situations, he handles things. with a welder, hammer, saw and his hands he can make or fix anything. it was very, very hard for him when i first started having pain and limping around and wanted to talk to him about it. his eyes glazed over and he said "what do you want me to do". i didn't understand that he wanted to "fix" me and he didn't understand that i just wanted him to listen. he had to come to terms with not being able to fix to me. i think maybe you are going to have to do the same thing. this isn't something you can fix. however, once you can accept that you can't fix it, there are things that you can do.

once we got past that stage and came to the understanding that he couldn't fix me and i wasn't asking him to do so, then we got to practical solutions that helped me. things like going to doctors visits or researching meds, moving things in the house to make it easier for me, finding me a good walking stick, even changing the vehicles we drove to make it easier on me.

also, on some of the other threads recently there has been discussion of other pain relieving over the counter products that are helping some get temporary relief to get to sleep, dressed, etc. give those a read and maybe you will find something that gives you a little relief for a short time. i personally feel like the character in the movie ghost rider right now. a skeleton set on fire. the trunk portion of the skeleton anyway. my skull isn't on fire right now, thank goodness but my jaw keeps popping in and out of place. i wish someone could hose me down. sigh. i keep hoping i'll wake up tomorrow and things will be better.


Ang aka Kentucky Girl
Psoriatic Arthritis w Spondylitis
HLA-B27 positive
Re: Sick and tired
JenInCincy #171321 04/09/10 05:39 PM
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Guitarman, Have you been honest with your Rheumy about how you feel? Does he know how much pain you are in? I know that there a lot of people who can't work when they take pain meds. Are you able to control your pain when you are off work? You Rheumy needs to know that the Remicaid isn't working? Perhaps you need to decrease the time between infusions, or perhaps it is time to switch to another TNF blocker. You need to speak up and make sure you are treated.
Donna


Donna
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.

Mobic, Nexium, Naproxin, Lipitor, 6-MP, Nexium, Miacalcam, MSContin and 2 Norco for break through pain
Re: Sick and tired
JenInCincy #171347 04/09/10 07:25 PM
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Guitarman-fibro can also go along with AS. Alot of us have it and that is a norm for any autoimmune disease. I always say this-go ahead and cry, whatever you need to do. Just do not stay there!! We are always hrre for you if you need help!

Re: Sick and tired
JenInCincy #171379 04/10/10 01:16 AM
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Hi everone,
just a quick post to say I am feeling some better tonight and thankful of it. Still have the usual pains but the chest has let up thank god at least til next time. It was nice having somwhere to vent. I am going to talk more to my Drs. About what is going on with me and try something other than the remicade or at least look at my options. You guys helped me so much and my shoulder is here for you should you need it. I am so glad my wife signed me up for this board instead of me spying on you all. May god bless you and you all have a good night.
Thank you all

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