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Disappointed, Sad, and Desperate...

Original post by Mich0621

So, i am sure many remember my posts from the summer about my battle with my systemic Rheumatoid Arthritis ( i learned systemic comes from the fact that it spread to my eyes )

I have been diagnosed for 10 years and I am still waiting for a miracle. Or at least to feel well and not have to struggle with something regarding my health. I want to feel better and i am incredibly desperate at this time.

I thought things would be better when my doctor added a medicine called methotrexate to my weekly injection of enbrel. i used both medications on their own and failed on both.

Well, when I started the two together, i felt better and my hands stopped swelling. I felt great (except for my back, which is still causing agony-and no heels to make matters worse, since i do have a shoe thing).

That was up until last week. My hands were throbbing and i thought it was just my body reminding me i needed my shot. This week, both hands swelled terribly. i can't hold anything for more than 5 seconds because the pain makes me drop everything. It takes me a few minutes to button something or to zip. I can write for a few moments. It is even harder to type and that is basically why i haven't been on much.

So back to the drawing board. I am going back to my rheumatologist on March 10th. I also see a spinal specialist and I am scared that he will recommend surgery. I never had any surgery before, but the pain in my back was so bad that I has to crawl around to get dressed. I couldn't work yesterday since the pain was so intense. But I know since DH and I are going to talk about TTC in early 2010, I need to take care of this stuff now.

DH has been amazing, but i feel so bad that he has to deal with me like this. i am incredibly mean and nasty and I snap at everyone around me. I hate being like this, but the pain is unbearable. I have pain meds, but then I become incoherent. I feel like i waste my life away sleeping, because that is all i am able to do anymore.

I am going to Puerto Rico in two weeks, which is exciting, but i am frightened that i will be ill the entire time. Nothing excites me right now, and i feel like i am stuck somewhere i don't want to be.

Sorry for the pity session. I know people have it much worse than me, and I should be grateful for that.

But when is this going to end? I want to be able to enjoy life, not be confined to bed as still as possible in fear that if I move, the pain will come back. I am tired of being sick. Ugh!

Sorry again. Vent over. If anyone has ideas that will help, let me know. I am in physical therapy and there is nothing OTC that works. Accupuncture didn't work either. I really want to do kickboxing, but my back is so unstable that I can't yet.
Aug07OFCbride Posted:

Re: Disappointed, Sad, and Desperate...

I wish I had a suggestion as to something to try but I just wanted to offer some hugs and prayers!! Ya know Im always here if you want to chat or vent!
Mich0621 Posted:

Re: Disappointed, Sad, and Desperate...

I once again wanted to thank everyone for their kind words and concern...as of tonight, my hands are feeling a bit better and my back is okay. The swelling in both hands went down a great deal.

I am going to all of my doctors on the 10th. All I know now is that my doctor officially failed me on enbrel injections completely.

He increased my methotrexate (disease modifying anti-rheumatic) from 3 to 5 pills a week. So far, I tolerated them. I also am on 30 mg of prednisone, which I am hoping to stop in two days. I am researching a drug called Humira, which is another injectable medication, and I will likely be switching to it.

Everyone's caring, love and support is really making me feel a lot better.

And so are the new black ballet flats, 5 pack Mets tickets, and Juicy sweats i purchased in my misery. But I didn't spend too much so DH was happy with me!

Now, gotta get some sleep-ongoing trial and PT tomorrow night (I am forcing my therapist to get me to the point that I can take kickboxing, which hopefully I can do one day!)


to everyone. I hope for all the health and happiness to everyone here and anyone who is feeling icky, feel better!
jtgarsik Posted:

Re: Disappointed, Sad, and Desperate...

hey michelle - just read all of this...and ur update. i'm so sorry about everything ur dealing with nobody deserves to be in that much pain...although i am glad to see u're feeling a little better I will agree with heather about the hot bath...my aunt who suffers from lupas and r.a. really bad has always used hot bath with salts to relieave her pain...they have always helped her - especially at night before she goes to bed. i'll try to pick her brain and see what other tricks she has since she's been dealing with her disease for a very long time. lots of hugs to you....keep us updated following ur dr.'s appt. we love u!
DeannaNDave07 Posted:

Re: Disappointed, Sad, and Desperate...

Michelle, im sorry you are in so much pain.. i really hope that it subsides and the doc can help you.. i feel terrible for you
dgirl0114 Posted:

Re: Disappointed, Sad, and Desperate...

Michelle, just wanted to send many prayers & hugs your way that you find something that helps you very soon. I have fibromyalgia and have days like you described, but only once in awhile when I have a flare-up. It's not constant like you and my heart goes out to you. I am so sorry, sweetie!!

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