Confused, frustrated and overwhelmed without answers

Posted by lisabeans @lisabeans, Jul 15, 2017

Hope everyone is feeling well. Long story, short: been seeing a rheumatologist going on 3 years with severe muscle and joint pain. Had a positive ana (1:160 homogenous). I responded well to prednisone so he treated me for ai issues (either ra or lupus). All other tests are negative. I have pain, swelling, fatigue (I do have mild sleep apenia) hair loss and photosensitivity. Went to Penn Medicine to get a second opinion. Saw the pa. She examed me and went over my history. She said I have 14 out of the 18 pressure points in pain. She said I definitely have fibro. After 45 minutes the doctor came in. He agreed with fibro but said can't definately rule out ai issues. Also said my positive ana and symptoms could be from my colitis which is in remission. I have to take more blood work. They said to stop the arava and increased amitriptyline to 50 mg. I go back in 4 weeks but should call if I have bad pain sooner. The pa also said that they don't treat fibro patients. I am so lost and confused. Any input would be helpful. Thanks for reading thisong post.

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Parus | @parus | Jul 18, 2017

I do believe we are all like this in different ways...Finding a supportive team is laborious and I have reached the point I trust no one...Mayhap this will pass. I am sorry for the pain, fear, uncertainty, we are all facing.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 19, 2017

Hello @lisabeans,

I'm glad that you posted about this confusing condition and I'm sorry to hear that you aren't receiving more practical help. Mayo Clinic has some information about treatments for Fibromyaliga, here is the website, http://www.mayoclinic.org/diseases-conditions/fibromyalgia/diagnosis-treatment/treatment/txc-20317826. Are the new meds helping you at all? As your current doctor said they don't treat Fibro patients, have you asked them who they could refer you to who does treat this condition?

Teresa

lisabeans | @lisabeans | Jul 19, 2017

Teresa,

So far I dont have any relief. Since stopping the arava and increasing the amitriptyline, I am sleeping better but tbe pain is much worse. The new rheumatologist said to come back in 4 weeks. Tbey are goung to trest me for niw since they can't say definitely there is no ai issue. She also said to call her if the pain is tnat bad. I have to get all the blood work done again.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 19, 2017

@lisabeans You say you will be tested for niw. I'm not familiar with that term - what does niw stand for? Teresa

lisabeans | @lisabeans | Jul 19, 2017

Sorry. I wrote that without my glasses on. I meant they are going to treat me for now.

Parus | @parus | Jul 21, 2017

I had been saying how much my pain has worsened...now in PT in the hope of getting an injection because of...go through the hoops as no one wants to part with funds and spends more funds trying to save...I am in so much pain trying to do as I am asked and I am not a slacker...time lost because of hoops.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 21, 2017

In reply to @parus "I had been saying how much my pain has worsened...now in PT in the hope of..." + (show)

@parus I understand. Hoops can be a stumbling block - but the process of jumping through them can eventually bring us to a better place. Teresa

John, Volunteer Mentor | @johnbishop | Jul 21, 2017

In reply to @parus "I had been saying how much my pain has worsened...now in PT in the hope of..." + (show)

Hello @parus, I am so sorry you are having to go through so much pain and doing your best to deal with whatever life throws in your way. It is a struggle we can all relate to and I also find it sometimes depressing. The trick for me, if you can call it that, is to put happy positive thoughts in your mind and surround yourself with people who are positive. Having negative folks around you even in what I call "coffee conversations" is a drag on you and like osmosis, it's easy to absorb. My wish for you today is that you find some relief for your pain and a long term solution that helps you.

Please don't let the hoops get you down!

John

Parus | @parus | Jul 21, 2017

Long term solution...not a healthy choice. Mayhap I misunderstood. My father made the long term solution...

John, Volunteer Mentor | @johnbishop | Jul 21, 2017

In reply to @parus "Long term solution...not a healthy choice. Mayhap I misunderstood. My father made the long term solution..." + (show)

Sorry, what I meant by long term solution is some treatment that will get rid of some or all of your pain and help with the health issues. Didn't mean to cause confusion.

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