I am scared....

Hello to all my dear friends/family! I have not been posting much lately because I have just been so miserable and I feel like that is all I do anymore is whine! I have never been such a negative person and I just hate it! It just seems like lately, I am not getting a break from the pain at all! It never has gone away completely....but I used to feel like it would ease a little, to where it was not the only thing I could concentrate on. Now it seems to consume me completely!

Anyway, I have been around.... reading posts and keeping up with everyone.....and chiming in occasionally....because I can not stay away from all of the amazing people here! So now I have somewhat of a dilemma.....as many of you know my appointment with the Rheumy did not go as expected and basically was told that he wanted to see me in a flare....however he was going on vacation so he was going to put me on a low dose of steroids to keep me out of a flare until he returned. Well he is back from his vacation but I am scared to go off of the steroids!!! This past month has been awful! I hurt soooo bad and I am so worn out! I know that I need to stop the steroids, but I can not imagine going into a flare and feeling worse then I do right now! I know that I can not move forward with anything until I do this and I need to move forward.... oh my goodness.....this sounds really silly! I sound crazy or something, or like the biggest baby around! I know what I need to do and I guess I just need to do it! I will probably wait until Sunday, just in case it happens quickly. I would not want it to happen on the weekend if I can help it!

Sorry, I guess I am just kind of rambling because I am scared.....and trying to work this out in my own head! Thanks for listening (reading)! I miss you all and care very much what is going on with all of you! Hopefully, I will get this over with soon and begin moving in the right direction....well any direction would be nice....I have been stalled for quite some time!!

Wishing you all a LPD!

Take care of you.....all of you!!
Hugs,
Beckey

Beckey,
when is your next appointment with this rheumy? and I'm sorry your in
this situation, but you can make it thru it instead of a total cut off can you cut back
on the steroid, maybe cut back two days before your doctor appointment, do
it slowly, steroids need to be tapered...hope that'll help...and sure hope you
get a low pain day soon..
((((((((((((((((((((((((Beckey))))))))))))))))))))))))))))))))
("Your not alone" is a good song by saosin) and with us your friends you'll not be alone in this...

   Dear Becky,

   I was just thinking about you the other day *hugg* I am so glad you had a chance to stop by and give us an update. You sound just plumm worn out and I am so sorry. I wish I could help some how.

     When is your appointment? I ask because it takes several days for the steroids to leave your system. Did they give you a specific time frame? If not, then call and ask. That way you will know for sure.

     I am so sorry you are so frightened. Who could blame you? When the future is so uncertian? When so much could change in just one 30min appointment? *hugg*  You can do it. You know why? Because you owe it to yourself to give your body a chance to survive. I know you can do this! I am so sorry you have been kicked around by the medical community when you needed them the most! But, give yourself a chance & give this doctor a chance. He might be different, he just might be able to help. You wont know til you take a deep breath and take the first stepp!

     *warm huggs*
          dani

Know that I am thinking about you and have felt the EXACT same way before. The feeling will pass hopefully in a few days. I know it's a hard time for you, but keep the faith and don't lose hope! You are strong and have gotten this far in chronic pain with screw-ups from doctors before. Things WILL work out in your behalf. Just keep the faith!

Thank you all so much! This is why I love my friends/family here so much!!

Dani, You already know how I feel about you! You are an angel on earth! Thank for taking the time to post a reply.....I know you are stretched to your limit! Love you!! I do not have a scheduled appointment....I am just supposed to call when I go into a flare! I have tapered down to the bare minimum on the steroids at this point, but I feel it when it is time to take it! Almost as bad as if it were a pain pill! Anyway, I just need to decide to stop them and do it! The only way to get help is to do what the doc wants! Love ya' lady!

Heather, Thanks for posting and helping me to understand.....once again.....that I am not alone! Everyone here really...truly....understands!!!! My first flare was soooooooo bad! I woke up shivering at 2:00 am in May! I put on sweats and got under 2 blankets and fell back asleep. When I woke up again at 6:00 am EVERYTHING HURT SO BAD! I even thought I had the worst ear infection ever....but it turned out to be my jaw joint! I did not have insurance right then so my doc only did a SED rate and it was sky high! She put me on steroids to see what happened! She said RA reacted very well to steroids.....and guess what....within 2 days I was feeling so much better! So I tapered and then went off the steroids and 2 weeks later went back into a flare. My insurance was back in effect and they did a RA test. My PCP was concerned about how high it was! She said 35-45 is high.....over 45 is extremely high and I was a 57. So back on steroids and made an appt with the rheumy. At that appt.....a month later....my RA test still came back at a 54.....but the doctor could not "feel" any damage in my joints and he was headed out for vacation......sooooo he put me back on steroids and basically told me to hang on until he got back and then when I went into a flare come see him! I have tapered down to almost nothing and now he is back and I should stop them. I have felt so completely miserable the last month that I am scared! I told him how miserable I was and his answer was...."well, it is a good thing you are on unemployment right now....isn't it?" So I felt like it just did not matter much and I needed to suck it up and get through it! Anyway....short story long....that is what is going on now! Thanks so much for your concern,,,,,I really needed it! Big hugs!!!!

Elenor, thanks so much! Like I said.....this is why I belong to this forum! I got what I needed....people to respond who understand and care!! Thanks and Big hugs!

Skeye, Thank you for responding....and in case you did not see....I have tapered and am basically at ground zero now and have to decide to just stop....I just don't wanna!! I feel like I just want to lay on the floor and through a major hissy fit! Kicking my feet and flailing my arms and whining right now! But my daughter would get a swat on the bottom for that behavior.....so I guess I better not! LOL! Besides....she is 21 now, so I better act my age too! It means so much just to know people understand and care! Thanks you and Big hugs!

Sooooo....I am going to take the steroids through Saturday and none on Sunday and we will just have to see what happens! Thank you all for helping me through this! I just got to be tough now and quit whining! Sending you all lots-o-love and healing thoughts!

Take care!
Hugs,
Beckey

Hello Beckey! Sorry I got here so late. Life has been busy for me lately, but I do check this forum as much as I can.

I too am stunned that your Dr would want to see you in a flair. It sounds like he is wanting to learn at your expense. I don't buy it, but maybe he has a valid reason that I do not understand.

We all feel for you, and I can understand the fear of going through something that you know will cause you great pain. I'm the biggest baby when it comes to pain. I used to be OK with Epidurals,
as I was always sedated, but the last idiot would not listen to me, and gave me one without sedation. Needless to say, I now have a great fear of Epidurals now.

You're fear is real, and can haunt your mind, and in some ways be worse than the pain it's self. You're fear has a friend that works together, and that is pain.

There will be a solution for you, and I know that you will get through this, and of course we will be here waiting. It really does help to know that there are members here that really do care, and try their best to understand.

My hope for you is sincere, in that you will face this fear with confidence, knowing that there may be a good outcome in the end. I certainly don't have the answers for you, but in spirit I will be there, with the rest of the members from this forum.

SE

Beckey,

I am sorry that the doctor wants to see you in a flare up. That doesn't make sense, and I don't understand any doctor's reasoning at this point. Being scared is normal reaction to a request like that, so try not to feel like you are crazy or wrong. I know I have gone through being scared many times and it is not an easy place to be.

You are in my prayers, and I hope that you soon get the pain relief and help you need.

Hugs,

Mindy

Mindy,
We were posting at the same time!! Thank you for your prayers and support!

Hugs,
Beckey

Well it still doesn't make sense to me, unless he is thinking it is a gout flare-up, and wants to see it, to make sure, that it isn't that, but I am no Doctor so what do I know??? I guess I am just naturally suspicious of most Doctors and what is really behind their reasoning. But as long as you trust him and are happy with him that is what really counts! And of course that he is helping you!  It is difficult when you have to drive along way to see these specialist, I certainly wish you well Becky, I do know what it is like to to have problems with ones back and then other joints!

 

 I just got a steroid injection into my right hip joint last week as I have bad inflamation in that joint and that joint is really bad according to the MRI and Arthrogram reports, I had been to a rhuemy several years ago and had a positive ANA but neg for lupus, and nothing said about rheumatoid arthritis, since then the fingers on my right hand have went to "Hello"  in a hand bag, and I have one finger ( my little pinky) that is very sore and tender and really deformed at the joints and swollen up and the joints are hard and locked and cannot bend them, the other fingers are swollen and red and I cannot straighten them out flat. But unless I bump that hand and that pinky it is tolerable, and I get by!  The problems and the pain  I have in the right hip and the back and neck are more than enouth for me to deal with right now. I know this saying is trite, but  I will say it anyway, Hang in there Becky!  you know we are all here for you, and I do wish you all the best!

 

White Beard

Chartreux, thanks so much for your prayers and hugs....I need all I can get right now! You may be right about the injection....I don't know!!

White Beard, the problem is....I don't know if I trust him!!! I am going by what others have said, The bigger problem is....where I am, there is not much of a choice! I have heard he was an excellent rheumy, but so far...I am not impressed and I found him to be very condescending. For instance, when I asked with my test being so high twice and the bad flare and the way it reacts to steroids along with other things like the morning stiffness and the nodules and the way it effects both sides pretty equally....all signs of RA...why was he still questioning it....his answer was "I have been doing this for a long time and I don't feel it in your joints" or when I said that 3 1/2 hours was a long way to have to go in that much pain....he said "Well that is how things are in Nebraska and I treat plenty of people who live as far as you do and even farther." And finally when I said but in the mean time, I am miserable. I hurt everywhere and I am so fatigued all I want to do is sleep....his answer was "Well I guess it is a good thing you are unemployed right now." So, I don't know what to think...he made me feel stupid and I have never considered myself as stupid! I have my blonde moments...LOL...but I am far from stupid! I am just confused and hurting and needing help! Anyway, I am sorry that you hip and back are really bothering you right now!! Back problems stink bad enough on their own!! I will hang in there and you try to also! Take care!

Susie, thank you for your advice! I read this and I did call them and try to explain and they did not do a whole lot but they did ensure me that they will squeeze me in no matter what when I go into a flare! I wish I had other options, but there is only one other possibility and she is 3 1/2 hours the other direction and my doctor had never heard anything about her. So I guess I will try....one more time and see what happens and then go from there! Take care

For all my wonderful caring friends/family here....I am sorry this has turned into a novel! Thank you all so very much for your advice and support! It means the world to me! I am so scared and so confused about all of this and add in that I am miserable... I really needed and appreciated all of your responses! So again THANK YOU ALL!!

Hugs,
Beckey

Hi Beckey,

I agree with Susie and WB, it sounds so off to have to see you in a flare. The last time I flared I ended up in hospital for 8 days. Is this what he's wanting from you? Just sounds so irresponsible. It can take months to properly settle from a flare, I can't believe he wants you to purposely flare. So wierd.

My rheumy goes on my symptoms, if something hurts even if the swelling is minimal in that joint she believes me. Why would I complain about a joint and want a steroid shot for nothing?

Last time I went off the prednisone it took about 4 weeks, to adjust to the extra pain and that was at a time my RA was under good control. I'm completely stuck on prednisone now to keep me stable. I hate it and love it...

Can you send him an email and state your fears, the 3 1/2 hours drive time, how you're already feeling exhausted? These are all symptoms of RA not being under good control. How is your morning stiffness? Beside my rheumy said some people have RA and no swelling or minimal swelling of the joints but still can get damaged from it. I swell along my tendon sheaths alot which is painful but not damaging the bone.

There is no way in the world I would go off my meds to prove to some rheumy I had RA. It sounds wrong.

Is there no one else you can see for another opinion? Best wishes and gentle hugs, golitho