I am getting soooo frustrated

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TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/6/2008 3:05 PM (GMT -7)   
I have been on here before. My rhuematologist told me today that she can't figure out what is wrong with me. ( not sure if its RA now)  All my tests come back negative.  When I go see her I sit for an hour and a half so I have no/ little swelling of my joints either that she can feel.  I have tried prednisone, indomethacin,and naproxen all of those didnt work to stop the pain.  I am currently on plaquenil, and still have pain but have alot more when I dont take it for a couple days, so therefore it must be working somewhat.  Now I have asked for something to help with the pain.  I really dont care if they can NAME whatever is wrong with me....I just want to have daily NO pain days.  Now they want me to go for a MRI.  The place they want me to go for that is 3 hours away from home....(not like thats all that bad really but I do have 2 little boys at home...)
Now I KNOW this pain IS NOT in my head, but its starting to make me feel like maybe if I just convinced myself its not there?  Like maybe I convinced myself I hurt so I just have to do a reversal of thought.  I am getting really upset and flustered.  Also apparently my rhuematologist doesnt prescribe pain meds.....uh I never heard of a doctor not prescribing meds for pain.  So now I have to wait till Monday when my family doctors office opens and ask my family physician for pain medication....
grrrrrrrrrrrr
thanks for letting me vent .....just upset....take care hope you all have better days than bad.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/6/2008 3:20 PM (GMT -7)   
Hey there.. did they not do any x-rays on you? You can be negative with all the tests, and still have RA.. I have PA and I'm negative for everything as well.. A lot of rheumy's don't give pain meds.. I don't understand it either.. is there any way you can get referred to a pain management doc? Why do you have to wait til Monday? Can you call them and see if they'll call in a script for you, just to get you through the weekend?
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/6/2008 3:26 PM (GMT -7)   
My family medical center is closed tomorrow....i dont know why. And yes they have taken I dont know how much blood....and taken xrays of my hands writst knees hips chest feet....and still cant figure anything out. So the next step they are taking is the MRI.
I could go to the hospital for pain meds I guess , thats IF they would give me some and not think I'm one of those people that just go for the drugs....cause now do I tell them I have RA or dont I ? I am sooo confused and frustrated. Everything (except the test results apparently LOL) points to RA....even both my doctors, family and rhuemy thought so, and now they dont know.
Really I dont care what they call it....i just want to go back to when I had no pain. I used to take my feet for granted...now I notice my toes every day...wierd what ya take for granted but really do need.
Thanks for the support.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/6/2008 3:28 PM (GMT -7)   
I can't remember, can you take NSAIDS? If you can, maybe Aleve to get you through the weekend or Tylenol Arthritis? I long for the pain free days!
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/6/2008 3:30 PM (GMT -7)   
I have taken tylenol and tylenol extra strength...its like taking a handful of skittles or m&m's now... but thanks for the ideas....where do i get aleve? is it prescription or over the counter?

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 11/6/2008 4:11 PM (GMT -7)   
Usually with RA sitting for a few hours does not make the swelling go down-it stays for weeks at a time. Also, you get what is called the gell phenomonon where when you first start moving after sitting down it takes about ten steps to get your knees to open back up.
Having said that that still doesn't mean you don't have RA but it does mean they are right to keep looking. If plaq is helping it points toward autoimmune of some type-but there are many types. So if they will give you something for pain while they keep looking I would let them keep looking.
I hope you feel better soon.
Sj

Oh, Aleve, is over the counter you should be able to find it at any drug store or like walmart. It is a non steroidal anti inflamitory drug and will not be totally effective immediately it takes a week or more of taking it on schedule to see if it is going to make much of a difference and longer then that for full effect.

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/6/2008 4:18 PM (GMT -7)   
thanks Sjkly, the reason they thought was RA was because my hands started it both sides then moved to other areas of body but both sides...like next was both feet,,,then both wrists etc.
I will be glad to let them do more tests as long as they get the pain undercontrol.
thanx for the info on the aleve! I will go and see if I can find it...
take care

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/6/2008 6:26 PM (GMT -7)   
Hi, I just wanted to toss in that you can have RA and your x-rays will look normal...I had x-rays a few months back of my hands and they were normal, and I commented to my doctor that I didn't understand how my hands couldn't hurt so much and have my x-rays normal, and he said inflammation doesn't show up on them, only joint damage...it can take YEARS to get damage from RA.
 
Also, sitting usually makes it worse, at least in my hips.  When I get up..ouch! and I'm stiff for a bit while walking around..
 
All of my tests have always been normal and I have been going to the same rheumy for 4 years now, for what I thought was some kind of reactive arthritis sad
 
Although, I do have to say for joint inflammation pred is usually the gold standard because it is what usually works, I can clean my entire house on about 10 mg of pred.  I feel like super woman, that is the only medication I have ever taken that made me feel almost human.  Do you think it is fibro? I think someone mentioned to me once that if the pred/medrol doesn't work then the joint pain could be fibro related. 
 
How long have you been taking the Plaquenil? That worked for me too, and if you keep taking it, over 3 plus months you will see a difference but don't keep starting and stopping it.  I did that a few times because I thought I didn't need it and it took about four days and I couldn't get up my stairs.  Although, make sure you get a baseline eye exam for plaquenil users, I had to stop mine because it became toxic for my eyes.  I didn't get the baseline so we aren't really sure how long it was really affecting me.
 
I know it is frustrating, have you thought about getting a second opinion? You don't need positive tests to recieve treatment.

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/7/2008 7:48 AM (GMT -7)   
Momto3, thanks for your post. My aunt and my neice both have fibro, but I dont know if that is what I have. My rhuemy is wierd. She hasn't said anything out right, but my family doctor said I had "some RA factor" in the first few tests she did , thats why she passed me on to the rhuemy. I have been on the plaquenil since about june.... i was only off it for a couple days because i couldnt get in to get more. But I take 4oomg daily. With it there is less pain but still pain. I asked my family doctor for pain meds and she said she wanted me to ask rhuemy, so as not to mix up something the rhuemy was trying to do. Then yesterday I was told by my rhuemy's secretary that she doesnt prescribe pain meds. So now, because my family medical center is closed today dont know why, I have to wait till at least monday to stir up trouble and say "HEY IM HURTING HERE!! Somebody has to help!!"
I called the rhuemy today and told her to set up the appointment she wants me to take for a MRI, and now have to wait for those doctors to get ahold of me with the date.
As for a second opinion, I have thought about it, but apparently my rhuemy is THE best around where I live. I have a friend who is a nurse and she says that my Rhuemy IS THE BEST. That I was LUCKY to get in to see her as usually its a 6month or more waiting period to get in to see her. I was in by the end of the week.....
Have a great day....and thanks again for the help.

moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 11/7/2008 9:06 AM (GMT -7)   

TayIsa,

wow do I know how you are feeling with the pain. it is so overwhelming at times. I did go to a Rheumy, and he gave me 6 months of vicadin at 4 per day until I could get the appointment with the pain management Dr. Maybe you should get to  a pain management Dr  as well. I am going to one who treats a lot of cancer patients and I am hoping sh will understand the pain and help me with meds for the anxiety as well. I seriously hope you get some relief somewhere. the pain meds don't cure the pain but they sure help dull it!

good luck


 
 Degernative Joint disease, Depression from pain, Hypertension, Ulcers, Nerve damage
 Prozac 80 mgs, Synthroid, Ultram, Metroprolol, Lipitor, Norvasc, Vicadin, Benadryl (for sleep)__Vitamin D&K
 Bilaterla hip replacements, Bilateral knee replacements, Titanium Spine Fusion (L4-5)(4 spine surgeries)Angiogram, Oblation for SVT(supra ventricular tachycardia) Biopsy of left Optic Nerve, left shoulder surgery
 The hardest lesson in life to learn...Is which Bridge to cross and which ones to Burn.
 


TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/7/2008 9:35 AM (GMT -7)   
Thanks for your support Moondancer. I hope things get figured out soon. I am just getting kinda worried about winter coming on too,as cold and wet makes me ache more. So I was trying to get the pain meds worked out before that horrible winter weather comes.....I am going to keep at the doctors until they do something even if it is just pain meds to dull the ache without naming the "illness".
I will have to look into if there is a pain management doctor someone can send me to. Thank you for the suggestions.
Take care.
Its great to have all this great support, ((gentle hugs)) to all.

MellyMell
Regular Member


Date Joined Nov 2007
Total Posts : 23
   Posted 11/7/2008 4:11 PM (GMT -7)   
Has your doc done the CCP cyclic citrul peptide AB blood test?
 

Question: What is Anti-CCP? What Does Anti-CCP Indicate?

What is anti-CCP? What does anti-CCP indicate? When is it appropriate to have this test? Does anti-CCP determine if a patient has rheumatoid arthritis?

Answer:

What is anti-CCP?

Anti-CCP, which stands for anti-cyclic citrullinated peptide antibody, is a new and exciting blood test to help doctors confirm a diagnosis of rheumatoid arthritis.

Guide To Rheumatoid Arthritis

When is it appropriate to have this test? Does anti-CCP determine if a patient has rheumatoid arthritis?

Anti-CCP is a very useful test to order during the diagnostic evaluation of a person who may have rheumatoid arthritis. If present in such a patient at a moderate to high level, it not only confirms the diagnosis but also may indicate that the patient is at increased risk for damage to the joints. (Low levels of this antibody are less significant.) In the past, doctors relied on another antibody, the rheumatoid factor (RF) to help confirm a diagnosis.

Citrulline antibody is present in the blood of most patients with rheumatoid arthritis. It is used in the diagnosis of rheumatoid arthritis when evaluating patients with unexplained joint inflammation. A test for citrulline antibodies is most helpful in looking for the cause of previously undiagnosed inflammatory arthritis when the substance detected by the traditional blood test for rheumatoid arthritis, rheumatoid factor, is not present. Citrulline antibodies have been felt to represent the earlier stages of rheumatoid arthritis in this setting.


Mao periculosam libertatem quam quietam servitutem.
("Rather a dangerous liberty than a peaceful servitude.")


TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/7/2008 4:21 PM (GMT -7)   
MellyMel thanks for that info. I did not know about that particular test. Although I do know my doctors have told me that have done the blood tests to look for the (RF) they have not mentioned the anti-ccp test. When I speak to my family doctor on Monday I think I will ask if this particular test has been taken. I do know they have taken over 20 viles of blood, surely you would think they have done that test.....but then again. LOL
Thanks again, I will definitely be asking my doctor.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/7/2008 7:41 PM (GMT -7)   
You're welcome and yes sometimes you have to say just that...I'm hurting! Your rheumy doesn't prescribe pain meds for whatever reason and mine is very stingy on pred, will give me pain medication before prednisone...go figure, I guess it just depends on the doctor.  Although, there are very few pain meds that truly work for the inflammation, however, they can at least make a dent in the pain if nothing else..I hope you get some results very soon.

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/7/2008 7:43 PM (GMT -7)   
Me too! Have a great nite! I will post any updates if anything gets sorted out.

koi collector
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 11/10/2008 12:21 PM (GMT -7)   
i understand the pain problem. i have AS and i took 3 reheum to figure that out after a year and a half. i graduated from motrin to vicodin then percocet.
hang in there, maybe try a new doctor. i've gone through a total of 8 in different specialties, just to find out i have AS. good news is that rheum 3 has me on new meds that are actually helping quite a bit.

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/11/2008 12:07 PM (GMT -7)   
koi collector, i am soo glad that you have gotten onto meds that are helping you! Thanks so much for your post. I have confirmed with my rhuemy to set up the MRI appt and am waiting on that office to call me with the appt specifics. I have also made an appt with my family doctor to see what she is going to do about my pain until they get things sorted out. I have wrote down the name of that CCP test MellyMell mentioned and am going to ask if this test was done. I dont necessarily want it to be RA, but I DO want them to figure it out so that they can help me to heal/or at least cope.
Have a great day.

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/13/2008 9:43 AM (GMT -7)   
Well I went to my family doctor yesterday.  I told her my rhuemy is setting up an appt for an MRI, and I was asked why? LOL . All I could say was I dont know, but I agreed to go.
I also asked if they had done the CCP or anti CCP blood tests, in my family doctors records she said it didnt show that it did but to ask my rhuemy at my next appt.
All in all the appt was generally a waste, except that she gave me some Tylenol 3's to see if they will help with the pain, and said to go back if they didnt help.
She also said my tests were coming back with inflammation, and they do believe there is something not right going on but that they cant Name what it is, and that possibly the MRI is another way to help name whatever it is.
Thank you all for the support. I hope these T 3's help.  Take care and Im sure I will be talking to yous soon.
((gentle hugs)) and hopes for a painfree/ or less pain day for you all. smilewinkgrin
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