Sunday, July 24, 2011

Another Frustrating Appointment- Part 2



I had my back x-ray two weeks ago. The results?

Normal.

I should be happy about that but I'm not in the slightest. Frustrated just isn't an adequate word to describe how I am feeling. This roller coaster ride of emotions is exhausting.

I felt like screaming at the poor woman on the phone, normal? You try and deal with back and rib pain for four months and then tell me everything is normal.

No. Everything is not normal.

What part of I can't work due to this pain, I'm struggling to function and I really need some pain killers, please, screams normal?

Now that endometriosis pain has been ruled out, I've pinned my hopes on arthritis because it seems the most logical but my mind is drowning in doubt. I've never experienced pain quite like this before and it did start very suddenly. Heck, I've even turned to google in hope of some clues, which, is never a good idea. Now I'm terrified that I have some rare disease that no one will be able to diagnose.

My doctor just doesn't know what to do anymore. We both fear that every test will come back normal when we both know that whatever this pain- normal it is not.


(image via)

Knowing the results of the x-ray I was advised to consult my rheumatologist about the matter and let her decide what to do next.

Well that appointment was one hell of a whirlwind.

She suspects the cause to be arthritic too but the fact that the back is not commonly affected to this degree in rheumatoid arthritis, means that my symptoms are officially not typical of rheumatoid anymore.

We need to get out of the rheumatoid basket.

After a year of assuming I have rheumatoid arthritis because that's what my nan has, I now feel like I'm back at the very beginning. Although, this time I have my mother contributing to the confusion. She's been seeing my rheumatologist since this year also and apparently our "type" of arthritis, whatever it is, is most likely the same. Well, at least we have established it's genetic. That's something.

She's even gone back to using the term 'polyarthritis' which is code for I don't know. It sucks when you have to hear from other health care professionals oh that's a nothing arthritis, it doesn't exist. Um, yeah it does. Just because I don't know what type of arthritis I have, doesn't mean that I don't have arthritis. I should know, I'm the one that struggles with joint pain every single day.

During my appointment a family history of psoriasis was questioned for like the millionth time. No one has psoriasis. My mother informed her that one of our family members had recently developed a scaly rash and was going to the doctor about it. This news excited her.

If the rash was psoriasis, she should order an MRI. She suspected psoriatic arthritis and presumed the pain in my back and ribs to be spondylitis.

She sent me off for more blood tests and told me to phone her to let her know if psoriasis was diagnosed in the family. She also told me not to get my hopes up.

I stupidly did. I thought I was surely close to answers and pain relief.

Nope. Far from it. The rash was dermatitis. I wouldn't wish psoriasis on anyone, especially not a family member... but Damn you dermatitis. Damn you.

On Friday I phoned my rheumatologist. All blood tests were normal.

Normal.

I informed her that it wasn't psoriasis and so apparently an MRI isn't necessary. Why oh why am I not convinced? I reckon I should be having one again but I guess that's not my call to make. Still, I can't help but be concerned about the lack of investigating.

I'm not even allowed to try medication to dull the pain yet and while she still believes that my pain is inflammatory pain, she now wants me to consult the chronic fatigue specialist who I am finally seeing this week to hear what suggestions he has to offer. If that appointment sheds no light then I'll be placed on prednisolone for yet another trial.

As soon as I got off the phone I couldn't help but burst into tears. I'm suppose to be seeing this chronic fatigue doctor about my fatigue, not about some stupid unexplainable pain. It's not his job to figure out if it's arthritis pain or not. More than likely he won't know what's going on, then I'll be put on prednisolone and by the time that kicks in... or if it doesn't- that's one more whole entire month in pain.
 
I just can't do this anymore. I am tired, and I am frustrated. I just want to give up. It would be a hell of a lot easier. But I have to keep going.

This pain gives me no choice.


 






2 comments:

phylor said...

So sorry you are still in pain and with no answers as to why.
I'll have to look up the proper spelling, but a friend has aksomething spondylitis. Apparently, there is a test that can be done to see if you have the marker for the disease. It effected her back and shoulders. She took celebrex (after it was allowed back on the North American market) which is indicated in some types of arthritis. Another friend has a rare form of arthritis. He has swelling as well as pain, and has been on various different meds and pain killers.
I have osteoarthritsis and osteoporosis. The areas where the osteorthritsis is the worst (neck, jaw) are the areas that hurt; sometimes the bones in my legs and arms hurt too. I had it in my jaw for several years before it actually started to cause pain issues. With osteoarthritsis, there isn't the same kind of inflamation of the joints, etc.
I will find my friend's email about the test for a marker for aksomething spondylitis and pass the information along. I don't know if they do the test in Australia, but she had it done in Canada.She had to change her diet (sorry) but she has been doing okay for the last few years. She uses a computer daily (she is a newspaper editor) and is able to keep up with her job.
Sending you gentle (((((hugs))))).

Emily Ruth said...

yeah I've heard of it, I've probably been tested for it as I've been tested for so many things but I'll have to find out if I have been. I'm sure she would have mentioned it if she thought I had it. I've tried celebrex and it did nothing for me, then again I didn't have this pain when I tried it. Will be interesting to see what this fatigue dude says... maybe she thinks it could be a possible reason for my fatigue. It would be interesting to know what diet your friend is on, I wonder if it would help me. I desperate to try anything at the moment. LOL!
Thanks for the info, hopefully I'll get some answers really soon.

♥ Miss Chronically Creative

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