Having a hard time believing

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Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 11/4/2006 4:41 AM (GMT -7)   
Hi first thank you all for the support. I am having a hard time believing I have RA. I don't have symetrical joint involvement. My RF has only been positive once it was 22. My anti cyclic citrullinated peptide was 111. I don't know if it is denial or a healthy mistrurust of doctors. I am on treatment because I don't want to find out I am wrong and damage my joints. I have been ill and I do have joint pain. There has been no joint damage so far. I don't feel like I get enough feedback from my doctor. If I have joint pain does that mean my joints are being damaged? I have been on Sulfasalazine for 4 months and on MTX for four weeks. I haven't had any side effects except I seem more tired. Yes I do ride a Harley.....A Heritage Softtail 1450 cc. My greatest fear is no being able to ride. My hand pain frightens me.

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 11/4/2006 5:24 AM (GMT -7)   
harley .... been there done that and in some ways i still question my dx. i think because it is chronic and not going away, that is why i think they must be wrong. but my body tells me otherwise. in the beginning i knew i had pain, but RA? so hard to except for me. i still sometimes look up other things to see symptoms. i too mistrust doctors. they are human and often make mistakes. but if u r like me the pain is real and constant and at times debilitating. it is esp. on bad days i accept my dx and on good ones still deny.

glad u r not feeling ill on the mtx, yep fatigue is normal for me.... i forgot to take mine last night so i have to take it today and it will mess up my day and make me a couch potato! hehehehhe

well take care and i think the denial is normal, anger and all those feelings will come for a bit i think they did for me . be careful on the harley! yalinda

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 11/4/2006 7:21 AM (GMT -7)   
Harley Hi and Welcome,

I know how yoy feel I felt the same way only it should nat have came a surprise because of all the other crap I have.I have CROHNS,RA,OA,AS,Sorgens as well and every one of them are auto immune disease.But it is never easy on any one that has this or othere disease.If is as if you are telling your brain to do one thing and your body doing somthing totaly different.Please do know that you are not alone and that feel free to post any time you need to.
Thanks
Curley......
a.k.a.Mela...........


dubjean
Regular Member


Date Joined Mar 2006
Total Posts : 38
   Posted 11/17/2006 1:38 AM (GMT -7)   
Hi Harley Diva,
 
I've have OA in both my hands and asked my rheumy the same question:  If I'm on painkillers and my hands don't hurt, am I further damaging them?  She told me YES.  I was told not to lift over 10 pounds and not to do repetitive motions for longer than 1 hour at a time.  This seems to help...except now when it's been raining for a solid week...lol!   I felt the same way..she never offered me this information until I specifically asked for it.  You would think they'd let us know right away.
 
It's natural to feel overwhelmed, angry, and feelings of disbelief and frustration.  Good luck and hope you feel better...just don't drive your Harley longer than an hour at a time and you should be fine!
   Dubjean

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 11/17/2006 6:41 AM (GMT -7)   

I think you are right to mistrust your doctors--I know that sounds cynical, but AI disease is darn difficult to dx, and rheumys are wrong sometimes.  That being said, with a slightly positive RF, and joint pain, it sounds like something is going on with you.  It may not necessarily be RA, but could be any of the connective tissue diseases.  Like you, I have a slightly positive RF with symmetrical joint pain.  My official dx is RA, but rheumy is the first to state I don't really have RA.  At this point, he really doesn't know what it is, except that it is something inflammatory, and it responds to typical RA medications like enbrel and mtx.  Without an RA dx, my insurance would never have agreed to pay for enbrel, which is a very good drug, so there is a rationale for  having a dx, even if it's not the correct one.  When my rheumy prescribed ultracet, he made sure I understood that it would not be a good thing to take just ultracet because it does nothing for the inflammation; just takes the edge off the pain.  Inflammation, even low-grade inflammation not associated with swelling, can do disastrous things in your body, including your joints. 

Early on, like you, I had good days and had a great deal of denial about anything AI going on.  These days, though, it is obvious to me and to those around me, that something ain't right.  Rheumy is also getting very aggressive with the meds.  I think you're doing the right thing by going on the DMARDs--you can always stop taking them if you're not comfortable.  You can't undo damage to your joints once it's already done. 

Best of luck to you,

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 11/17/2006 7:25 AM (GMT -7)   
Harley Diva said...
Hi first thank you all for the support. I am having a hard time believing I have RA. I don't have symetrical joint involvement. My RF has only been positive once it was 22. My anti cyclic citrullinated peptide was 111. I don't know if it is denial or a healthy mistrurust of doctors. I am on treatment because I don't want to find out I am wrong and damage my joints. I have been ill and I do have joint pain. There has been no joint damage so far. I don't feel like I get enough feedback from my doctor. If I have joint pain does that mean my joints are being damaged? I have been on Sulfasalazine for 4 months and on MTX for four weeks. I haven't had any side effects except I seem more tired. Yes I do ride a Harley.....A Heritage Softtail 1450 cc. My greatest fear is no being able to ride. My hand pain frightens me.
  Harley;),
 
All of us are having hard times beleiving their diagnosis because it is changing over time and when we feel better we may "hope for cure".
RA is rheumatic disease and like for all of them prognosis is very UNclear. Some people experence full remission, others suffers badly. So whatever you have, it is primary a rheumatic disease, so stay calm, your goal is now to find the optimal combination of drugs and life habits for you to achieve remission, and it is not impossible.
 
about the joint pain and damage. My joints are in pain for 1 year and a half now, never had swelling and I cannot say that I have any damage on them (knock knock knock). Remember joint damage is best measured when weather changes there should be dramatical joint pain changes. Once I was told this by an orthopedist doc. Only slight joint damage is not even seen on X-Rays, but is sensible to the weather changes. I'm afraid of joint damage too that's why I started taking glucosamine which is a substance feeding the cartilage. I think my joints ar more smooth and painless now when I'm taking it. If you want you can try. Talk to your doc first! I suppose it is possible to have joint damage only from pain but it will definately take much more time then from swelling. I was told that the swetlling damages the joints hundred times more then just in pain. And it also depends on the pain severity and swelling severity too.
 
Good luck
Keep in touch.
Marius.


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain

Post Edited (Marius123) : 11/17/2006 7:48:13 AM (GMT-7)

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