Thursday, June 16, 2011

Nobody Understands

I figure this blog is my safe zone.  IF anyone is reading, you probably have an autoimmune illness, or some other painful condition that "normal" people don't understand.   Thing is, "normal" people understand Cancer.  We all hate it!  Problem with our conditions is that people don't UNDERSTAND how we feel. 

I hate the fact that I still don't have a solid diagnosis.  I really do.  I am considering going back with the original doctor who did the most thorough testing and diagnosed me with USpA.   I don't believe I have fibromyalgia.  The fatigue is the symptom that matches, and that goes with any number of other conditions.  I need a solid diagnosis so I can get on something to get me into remission or out of this flare that I've lived in for almost two years.  I'm so tired of hurting.

Nobody knows this pain.  I swear my family and friends (those I have left) think I'm faking or exaggerating or being a hypochondriac.  They don't know how truly sick I feel.  Or if they do, they don't care. Maybe that's it.  Maybe they are just so sick of me being sick that they just don't listen or care anymore.

My current doctor won't refill my pain meds that I take at max twice a day, but typically only once....a few days not at all.  He gave me tramadol which is doing NOTHING for my pain.  I'm weak.  I have no appetite because the pain is so horrible that it makes me nauseous.  I can't live my life this way.  I'm seriously thinking about ending it all.  (Please don't's how I feel)  I know my kids would be better off with their father and step-mom.  Two HEALTHY parents who love them.  I'm just way too tired and in so much pain to be any good for anyone.

I need help.  I need a diagnosis.  I am NOT going to another doctor.  I am just wanting something to work for me.



  1. Some hints to discuss with you physician in order to get diagnosed ( if you really thing your problem is rheumatic):

    - Ask, or pay privately for a MRI on whatever part of your body is causing more pain. A good radiologist should be able to detect trademark rheumatic features, like:

    * No clinically visible synovitis.
    * Tenosynovitis,Tendonitis or Enthesitis. Those are very usual on UsPA.
    * Bone erosion, or smaller joint space.

    If any of those are found, and they could not be related to a physical or overuse injury,suspect rheumatic condition.

    Have you been screened for RF, CCP, CRP, ESR? Any of those have an abnormal value? Fibro is not inflammatory on its nature.

    Also, have you been on Prednisone? You could ask for a small course on a small dose , maybe 5 / 10 mg daily to se if your condition improves. If so ,that would mean that your condition is inflammatory.

    I think, that, with that battery of tests you SHOULD be diagnosed. If your physician won't order them, just pay on a private clinic. Then , with the results go and put them in those doctors´face who ignored you.

    Wish you the best luck, please keep us updated.

  2. Above suggestions sound good. Good luck. I am so sorry you are going through this.

  3. I wish your current doctor was more supportive. I really do hope that somehow, you get some answers soon and get some help for the pain that you are in. *hugs* No one should suffer so much.

  4. I agree with first poster. Also, what else do you take for pain? Ask for a high prednisone burst, at least 30mgs. Tell doc this should let both of you know if it might be inflammation related if it provides even a little relief. Try different NSAIDs. Some work for one but not another. Try a 24 hr one, and then add Tylenol Arthritis a couple times of day. But take the TA at least four hours after or before the NSAID. TA worked better than Tramadol for me. The once-a-day nsaids Oxaprozin and meloxicam nsaids did better for me than rx 800 mg Ibuprofen that had to be taken 3 times a day. Adding in the Tylenol Arthritis helped a lot when the tramadol wasn't.

  5. I totally understand. Chronic pain is horrible and the search to figure it out is not an easy one. It took me 3 years a many doctors to finally figure mine out. Hang in there, I get wanting to end it all, I totally do. Its just too much sometimes. Keep fighting the fight girl!

  6. Oh and steroids never helped me and made me worse

  7. I know how u feel I'm sick and in pain everyday of my life seems like my fiance doesn't understand the pain is so unbearable I can't do anything fun Anymore I'm 35 and feel like hell..