Re: morning pain and weather changes

[Guest guest]

Does it seem to be that in the morning the pain is some times worse? Mine

is..until I get a little motivated it seems to disapate a little. And also when

the weather is bad. It has been hard for me to except this disease, because I'm

an " on the go " kind of person. I can't do half the things I would have normally

done during the course of the day. I suddenly feel really old...I'm afraid

because right now I don't see any light at the end of my tunnel??....I'm taking

all these meds and I'm still in diar pain. I'm just waiting on this enbrel to

save me.

--

Carey

[Guest guest]

Hi Carey,

Your not alone. My family calls me the weather vein. LOL. My joints get really bad when a low front is coming on. There are days that I can barely move when this happens. It really bites when you are used to being very active and then all of a sudden life comes to a screaching halt. I've had this disease for over six years and have been through a lot of ups and downs with it. What I try to do now is when the good days are there (even though I have pain 24/7) I take advantage of them and do as much as I possibley can. I know sooner or later that the other shoe will drop and I'll be flat on my back. So for me I've learned to live with and compensate for those days, weeks or months whenever it happens and a flare rears its ugly head on me.

My pain is definitely worse in the mornings when I first get up. The first thing I do is grab for my medicines and lay in bed for at least an hour before I can really move around a bit. I've found that a hot shower and I mean HOT helps a lot and gets a lot of the stiffness and pain to calm down if I do this in the morning after my meds. There are days when it works great and there are those days that nothing works and you just have to go with it. It bites big time.

On those horrible days I just try to pop out of my body and completely dissociate myself from me. I've gotten pretty good at it and at times I can literally see me sitting next to me. I learned that from a psychologist friend of mine and my rheumy. It's amazing what ones mind can do when the pain of anything be it physical, mental or emotional can do. It may sound strange or weird, but it works for me.

I hope that you get to feeling better. Enbrel is a great drug. It was working really well for me until I lost my insurance. I've been on Phizer's scholarship for over two years maybe three and they have never called me. After a couple of injections I was up running around the place. It was great after being confined for so long. I was like you extremely active and to have my freedom taken like that was awful. It was very hard to adjust to life as I knew it.

This disease took its toll on me big time. First I got huge as horse and now I'm tiny as can be. It effected most of my major organs on top of everything else. Then I lost the love of my life, was diagnosed with lung cancer and that turned out to be some type of a rare pneumonia along with MRSA, I had to give up a bunch of my show dogs. There was a period that I was also confined to a wheel chair because I couldn't walk from this disease. Life really stunk big time. In one year's time I was hospitalized 12 or 13 times. I gave up count. LOL. One day I woke up and decided I'd had enough of all of this and fought back with a vengeance. Something had to give or I was going to go insane. Fighting the pain is bad enough without having needles and all other kinds of tests and everything jabbed into me. Who needs the extra discomfort? I sure didn't want it and definitely didn't need it. Not to mention the fear that was put into me. It was a nightmare for sure.

Today life is much better despite having my SD and all the other maladies it has brought me. I'm remarried, have a four year old son now who I adore and I attribute a lot of my recovery because of my four year old. We have a very special relationship. I have managed to complete two semesters of college in an attempt to get another degree in a field where I can work from my home and make my own schedule. If all goes well I will graduate next spring. I bought a new home despite being on SSDI and I'm back to showing my dogs even though I don't get to do it as often as I would like to, I'm doing my passion. While you may feel like there is no light at the end of the tunnel, there is. You may not be able to be as strong as you once were and you may not be able to do the some of the things that you used to do, but you will learn to adapt and have a life again. Right now the most important thing you can do is find what works for you and then stick with it. Keep yourself surrounded with positive things, people. Dream of how you want to be after you start taking the Enbrel. Accept that you may be sick now, but it will get better. It does get better. It's hard as hell sometimes to adapt to new things, atttitudes, lifestyles etc., but once we make that transition WOW it is awesome. In a way I can say that I am greatful for getting this disease because having to go through what I have it has given me a much deeper insight into life.

I really hope you get to feeling better and I'm super glad that you shared with the list. Had it not been for this group I hate to think what life would have been like. No matter what I have gone through there has always been someone here that has gone through it too and it was so comforting. I've been able to not only share my SD, but my life too and the support has been awesome. So thank you for sharing. Keep your chin up. I hope that there is something that I have said that you can take and feel good about. May your days get better and you be pain free soon. Here here. Take care.

Much love,

Terry

[Guest guest]

Yes Carey,

The pain most times seems worse for me in the morning too. It

gradually gets better after i move around some, maybe an hour or two.

Then I get a few things done and if I worked hard I hurt again going to

sleep. This dragon is very vigilant, lol, he never misses a chance to

torment us. The medications do eventually work and that will help your

feeling of hopelessness. We have all been there, done that, and feel

for you sweetie! You are in our thoughts and prayers. I tried a few

drugs and Enbrel was the big saver for me at the time, I hope it is for

you too! Louise.

mncnotenuftime@... wrote:

>

> Does it seem to be that in the morning the pain is some times worse?

> Mine is..until I get a little motivated it seems to disapate a little.

> And also when the weather is bad. It has been hard for me to except

> this disease, because I'm an " on the go " kind of person. I can't do

> half the things I would have normally done during the course of the

> day. I suddenly feel really old...I'm afraid because right now I don't

> see any light at the end of my tunnel??....I'm taking all these meds

> and I'm still in diar pain. I'm just waiting on this enbrel to save me.

> --

> Carey

>

>

>

>

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> application, medication or preparation by any person following the

> information offered or provided within this support form.

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> ion by any person following the information offered or provided within

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[Guest guest]

Hi again Carey! I find that I generally feel sore in the morning, and progressively worse as the day goes on because I am still working. I also have found that if I lay around or sit still, I get as stiff as a board any way.

Kirk.

Re: morning pain and weather changes

Does it seem to be that in the morning the pain is some times worse? Mine is..until I get a little motivated it seems to disapate a little. And also when the weather is bad. It has been hard for me to except this disease, because I'm an "on the go " kind of person. I can't do half the things I would have normally done during the course of the day. I suddenly feel really old...I'm afraid because right now I don't see any light at the end of my tunnel??....I'm taking all these meds and I'm still in diar pain. I'm just waiting on this enbrel to save me.-- CareyVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.