I am scared....

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antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/25/2010 1:17 PM (GMT -7)   
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

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 8/25/2010 2:34 PM (GMT -7)   
Ah Becky, I can feel for you honey, as I am in the same boat. My days have been tough for a long time and it never seems like it is going to end because I have no doctors that can find an answer to my pain. I am trying to keep in mind my motto of one day at a time to get thru the day. I know that being negative won't get us any further ahead but I also know that that is easier said than done right. I just wanted to tell you that I understand how you are feeling. Know that I care about you and send you my thoughts and prayers.
 
Hugs
 
Suzane

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 8/25/2010 2:51 PM (GMT -7)   
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...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/25/2010 3:04 PM (GMT -7)   
Suzane, I know how hard your days are and when I think about how much you suffer, I feel like a really big baby! You are so strong! I think about you all the time and pray that they will find a way to get you some relief! Thank you for taking the time to respond and for letting me know you care! Sending you hugs and prayers!

Chartreux, Thank you for responding! I do not have a scheduled appointment with the rheumy....I am just supposed to go see him when I go into a flare. I am only on 5 mg prednisone and I started out with three a day, went to 2 and am now down to 1 a day. So I have cut way back and now it is time to stop. I had two very high positive RA tests that were done 2 months apart but he said that he could not feel it in my joints, so he wanted to see me in a flare. This is what scares me because the flare I had was soooo bad! I just wanted to cry or die or something! The rheumy is a 3 1/2 hour drive from my house....and as bad as I have been feeling, I just can't imagine basically causing myself to flare! But I know I can't do anything until it happens so.....I gotta do what I gotta do, I guess! Anyway, thanks so much for trying to help with the steroid situation... and know that just knowing that people here care helps LOTS! I will get through this! I need to quit being such a baby and just suck it up! I know so many people here suffer much more then me and I used to think I was pretty tough....don't know what happened! Thanks for your thoughts and kindness! Sending you hugs and wishes for LPD's!

Take care!
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/25/2010 3:26 PM (GMT -7)   

 

   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


 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 8/25/2010 3:47 PM (GMT -7)   
Hi!
Just stopping by to say glad you posted and that's what this web-site is all about. Talking out our situations and leaning on "our family" here!:)
I'am so sorry your going through Steroid He**!! It is such a double edge sword. It is really scarey going off of steroids. I have been on and off them and each time my body gets more and more mad at me! The reactive arthritus (so they call it) I get from it is debilitating! not to mention depressing because your whole body aches...and you don't want to even move! I also get a little fever with it...
I was wondering if you've already had some tests with positive readings WHY the Dr. wants you to go into a flare again? Doesn't he believe you? Is this because he didn't feel it? I guess I would ask if you could treat it without a flare. You have the numbers to support it! Flares are SCAREY and when your in one you can hardly imagine getting out of one.
All this happening to you and a long drive to get to the Rheumy too...
You'll be in my thoughts and prayers. Just remember we are all here for you!

Heather June
Crohns, Diabetes type 2, Fibro, (Depression and Anxiety..who wouldn't?) Back surgery on herniated L-4 L-5 and S-1. Total of 13 surgerys!


Imran 200 mlg, Asacol, Colestid, Bentyl, Lamotil, Paxil, Amitriptlyne, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!

JulietteSuzanne
Regular Member


Date Joined Dec 2007
Total Posts : 104
   Posted 8/25/2010 4:29 PM (GMT -7)   
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!

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/25/2010 6:47 PM (GMT -7)   
((((((Becky)))))))). I can understand your reluctance to come off the steroids. No one wants to be in more pain. Maybe slowly tapering off the steroids, rather than stopping suddenly, will help prevent you from going in to a really bad flare right away. Hang in there. You're in my thoughts & prayers.

hugs,
Skeye

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/25/2010 8:44 PM (GMT -7)   
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
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 8/25/2010 8:46 PM (GMT -7)   
Becky
You said (" I had two very high positive RA tests that were done 2 months apart but he said that he could not feel it in my joints, so he wanted to see me in a flare. This is what scares me because the flare I had was soooo bad!") What is he talking about not being able to feel it in your joints???? Did he not take X-rays of some of your joints???? Sometimes your joints become swollen and deformed and that can be seen and felt. But wanting you to be in a flare-up so he can see it.???????  I don't know but that sounds weird and off to me. Doesn't he want to treat you unless he sees you in a flare-up???  Becky  is it possible to go to a different rheumy and get a second oppinion?  Every since I first read your post about giving you steroid to keep you from having a flare while he was gone. ????? There is just some things that you have said about him that...........well....... kind of raises red flags with me,  but wanting to take you off and wanting to see you in a flare up???? I don't know????  Maybe it is the way that Doctor does things???  Just seems kind of funny to me though! Anyway that is my two cents about it.!!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 8/25/2010 9:11 PM (GMT -7)   
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

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/25/2010 9:33 PM (GMT -7)   
Hi Becky,

Whoops, sorry, I did miss that. I'm running on 2 hrs of sleep last night & less than 10 hrs total over the last 3 days, so I'm pretty tired & reading is a bit difficult at the moment.

Sending you more hugs. I too don't quite understand why this doc wants to see you so bad. You're in so much pain as it is, I don't know what he would see then that he doesn't already see now.

Skeye

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 8/26/2010 6:06 AM (GMT -7)   
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
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw


Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, adhesions, and a kidney stone! Wait, future medial transcriptionist I must say ureteral calculus!

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/26/2010 6:18 AM (GMT -7)   
Again thank you all for responding! It means so much to me!

Skeye, no problem....I know what lack of sleep does to my already jumbled brain!!

Underthebus, White Beard, Screaming Eagle and Paula, all of this does not make sense to me either. This doctor is supposed to be really good according to others I have talked to. I live in a very small town in Nebraska and do not have very many options as far as a Rheumy. This clinic is supposed to be great and the doctor is the founder. There was one other rheumy who was closer to me but mt PCP did not like him at all when she spoke to him, and I do trust my PCP. I spoke to Golitho about the reasons behind seeing him while in a flare and apparently a "flare" can be seen on a MRI. My sister researched how RA was diagnosed and found out that the criteria had not changed in 25 years....and the main thing they looked for is joint damage! I was not showing any damage in my hands yet. But now they are looking into earlier DX! This is copied from an article on dx'ing RA...."Though diagnosing rheumatoid arthritis isn't easy, it is extremely important to correctly identify those with the disease. Delaying the diagnosis can be harmful because joint damage can occur early in the disease. Some experts think that blocking early joint damage can have huge long-term benefits." Well duh!

So....this is where I am at....I do take ms-contin for my back and my fibro, but it sure did not help much the last time! And the problem with trying to be closer when it happens is.....I don't know when it will happen. The first time I went off the steroids it was 3 weeks before it came back. I do not think it will be that long this time....because it feels like it is right there in the shadows this time.....waiting to pounce! I feel like I have no choice and maybe this doctor just REALLY needed the vacation he was going on and will be better this time! I am just dreading this so much....but I guess I have to do it!!

It really helps knowing how much people here care and understand! Thank you all for your support....it will make this a bit easier! Wishing everyone a LPD and sending warm hugs to you all!! I will try to let you know what is happening!

Take care!
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/26/2010 6:19 AM (GMT -7)   
Mindy,
We were posting at the same time!! Thank you for your prayers and support!

Hugs,
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 8/26/2010 8:06 AM (GMT -7)   
Beckey
Prayers and hugz to you and I hope you'll get thru this okay...
Hopefully the rheumy will see what he needs to and be able to help
you thru this...I'm wondering if by doing this he plans to give you a
injection after he see's your flair...
anyways, lots of hugz, soft ones...
(((((((((((((((((((((((((Beckey))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 8/26/2010 10:39 AM (GMT -7)   
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
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 8/26/2010 11:50 AM (GMT -7)   
Becky since you have done the taper and the pain has increased that would seem to indicate if you stopped the steroids you would go into a full fledged flare. I would call this rheumy and get an appt asap and let him now what is happening. If he still does nothing kick him to the curb and start fresh for a new rheumy. I don't see why a full fledge flare is needed to prove something that is not right. You should never have to prove anything to a dr.

Susie

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/26/2010 1:32 PM (GMT -7)   
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
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 8/26/2010 2:53 PM (GMT -7)   
Becky
 
I am sorry that you were treated that way by him! That is wrong! He works for you, you.... one way or the other, YOU  pay his wages!!!. I do understand how you feel though! All you want is a diagnosis and help and getting everything fixed.  It is confusing and when I was younger I used to just put up with what ever the Doctor said. But as I have gotten older and more cantankerous and more knowledgeable from working on the other side as a RN, I no longer put up with the crap that these doctors put out! I will not stand being patronized by a doctor or in any other way being made to feel inferior to  that doctor, no matter who or what he thinks he is! To me they are all the same, they might as well be a plumber or a mechanic, they work for me I hired them and I can also fire them! And I will be treated at least as their equal, or as there boss,  which I really am! Arrorgant Doctors, are the worst!  I definitely want a confident doctor, but I will not tolerate arrogance!  I do not think I would get along with your rheumy at all! How dare he talk to you that way! That a angers me something fierce! Just be carefull with him, as for what ever my oppinion is worth,  I am not at all sure that he is  really helping you!  After all he never really did answer your question did he? (his answer was "I have been doing this for a long time and I don't feel it in your joints"That is really not an asnwer! It is just his way of saying ( shut-up! I am the Doctor and you are the patient I will make all the decisions here and you will just do what ever I say!) and make no mistake that is exactly what he means! I hate to be so blunt, but the things you have said that he has told you!  .....well... that is a real  sore subject with me!  I have a real problem with Doctors that treat patient like that! I am sorry for rambling, I do hope things work out well for you! Please keep us all posted on how things go!
 
Becky I wish you all the best!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/26/2010 6:12 PM (GMT -7)   
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

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/27/2010 9:18 AM (GMT -7)   
Golitho and Underthebus, I want to thank you both for responding and for your advice! I am just so upset with this doctor and so confused about what to do. One of the two places he x-rayed was my lower back because it was hurting bad that day. He told me that I had spinal stenosis in L3/L4, L4/L5 and L5/S1. When I originally hurt my back, the problem was only at L5/S1. Now I do understand that over time this can get worse on it's own, but with all of the research I have been doing.....I know that RA will cause stenosis. So why did he not look at that as visual proof of the RA? Then add in the 2 positive RA tests and the rest of my symptoms, Also, my back hurts all the time....it has since I injured it....but now it is sooooo much worse and it hurts to the touch, which is basically a pretty new thing. Well new since the original flare, which I am almost sure was the onset of RA. And when he said he could not feel it in my joints.....The only thing he did was feel about 3 of my fingers and he kind of rubbed them from hand to tip...but that was it!

Oh dang it!!! The more I talk about this the more angry and confused I get!! I feel so terrible....I just want to feel better! I just want some sort of life back!!

I am so scared, but I guess I just go off my steroids as planned on Sunday and see what happens! I don't know what else to do! I think it is probably going to be really bad, but I do not know how I am going to get some help if I don't!

Thank you all again so much! I appreciate all you kind thought and prayers! Please keep up with the prayers because I think I am going to need them! I will keep you posted!

Wishing you all a LPD!!!! (everyday....too much to ask?)

Hugs,
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone
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