Flare/Pain management vs Having a life | Arthritis Information

 

I'm new to all this and I'm just trying to get my mind around what might lie ahead. So far I'm only dealing with moderately severe pain in more places than I can keep track of with sudden onset. I don't know how long this will last.

How do you all plan around what is so unpredictable? Should I just expect this as more or less normative. My joints still seem to work ok other than the pain. I'd like to go back to some sort of work. 

Sorry if I am opening a can of worms. I'm fishing for a way to cope with something I barely understand.



You have to get your mind around the fact that you have this dissease and do what you can,  when you can.
It's a case of you excepting this disease and others around (friends/familly) excepting it as well.

It's a bugger not knowing what's what from day to day, or hour to hour.
With time and the drugs hopefully you will be able to have a normal life all be it a modified one.

I hope that you can get the pain levels to a more exceptable level.


Bodak2008-03-09 11:38:53unfortunately like bodak said it's hard to make plan's when this disease can change how you feel from hour to hour sometimes, but you get use to and get use to doing what your body allows you to do. because if you push to hard sometimes it takes days to recover

I'll just say "ditto" to the posts from Darrel and Bodak.  It's terrible to make plans with your friends and then have to cancel because you are hurting.  The good news is that when I'm on a drug that works, I don't have to do that very often.

I suggest starting gradually and trying to build up to the level of activity you want.  Your body will let you know when it's time to stop. 

Hopefully as you progress with treatment, you will be able to do more and your condition won't be so unpredictable.

Life is that way we never know what to expect. I personaly am havibg a few problems but i am hopeful the doctors can help me out. A set back for now. Yes this disease is unpredictable and yes you have to except that you have a problem. But until you for sure have your diagnoses and get on some medication I do not want you to stop making plans and except that you can not do anything. Me personally i have had this disease for a long time untreated. So i am in pretty bad shape. Well everytime i get to RD's in the past I was not swelling. I lived in a bad area for doctors and it always took me three and half months to get in after already fighting with the other docs first to refer me. So that like five months total and it used to not show up on my blood work.  Well tomorrow is different as i am swelled and seeing a new doctor. Everyone is different. You have sudden onset well maybe i would like to think you can have some help. As if caught earliy you may have a better chance. Yes it is a disease and in light of that it is going to change your life but it does not get to define who you are and what you do. Everyone is different. You may respond to the first meds it may take some experimenting . I never even caught your age? Me personnally when i first had flares i would have years of good times in between. I am thank full for that. I had two flares a year a part about eight or nine years ago. Then i had one three years ago. Now i have been pretty much flaring scine September except for a month and a half. I am not yet treated now because of problems with infections. So i am trying to get rid of this infection by finding the absolute cause.  I could be wrong because i have never had that ability to get someone to treat me. I did take Arava for two days and felt better than i had ever felt in my life immediately. But then i was allergic to that. Another problem i have personnaly. I am allergic to at least 45 medicines. So i am really different. Yes you have to except that you have a disease. But except that you are going to fight it with all of your might. Don't ever just give into it. Thats just my opinion. Yes it is going to disrupt your life and it will be your job to disrupt the disease by calling the doctor. You have this disease except that. But fight with all your might to get better. I had a sudden onset also. (I was told this happens in only 10% of people but you are not the first person I've met on the message board that has said they've had one too- there have been more then a few) I probably shouldn't be as impatient as I am. Even when I was diagnosed with lymphoma it took almost two months before they got me on chemo. I'm battle fatigued getting through that. Now this.

Does this sound tenable? Plan everything as normal but expect delays and detours as part of the journey. Some things we know will just take longer to do and others will present themselves. I suppose that's no different than anything else, but probably just more reasonable given one is dealing with something that one doesn't have much control over.
Yes try to have the mind set that things may not go your way all of the time. But try to keep doing your life as normal as possible as long as you can. Patience is the key. But do not get to patient once you have your dx and you are swelling call your doc as soon as it starts so they can change your treatment paln if need be or get the swelling down as soon as possible. You are waiting now as the doc wants to know what is wrong with you for sure. But after that , say you get rid of the flare and suddenly it comes back, then you would call doc right away. I've found for me personally, there is No way, i could keep life, as it once was.. it comes down to prioritizing, planning and a willingness to adjust things if necessary.  In most cases you can live a fairly normal lifeHI, I only have one bit of advice to add and it is the same for all newbies, I would like to advise you to keep a journal, this enables you to keep track of when you start new meds, when you have Xrays, working out what may have possibly caused the flares, etc etc.,  I hope you don't have too much of a hard time finding some meds that work.  Best of luck from Janie. 
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