Fibromyalgia Support Group

Hi guys,

Have a favor to ask... Can someone please read this email I'm about to send to my Rheumy. She gave me her email so I assume it's okay to use it as needed. See if my message is getting across loud and clear enough and should I make any any changes?? Really appreciate any feedback! I'm desperate!!!!

Hi Dr. Arnold, 

  I hope you had a nice weekend.  I wanted to give you an update. I now receive PT two times a week with Debbie Kenney. She uses a gentle approach with massage therapy. I also saw Christine Crotion who gave me a prescription of Lunesta for sleep in place of what you gave me. She also renewed my prescription for concerta. My sleep has been significantly better. I also get accupuncture once a week. I continue to work very part time. 

 My concern is that my pain has not gotten better. It is constant, and often extremely bad. I can't get out of bed or from a seated position w/o a lot of pain in my lower back and hips. The pain often travels down to my knee and more recently down my whole leg. I always feel deep pain in my hips and buttocks, usually on the right, but it changes. My lower and mid back are always  very tight and painful.  My neck, shoulders and upper arms are more stiff than painful but if I sleep wrong they hurt the next day. 

My goal has been to keep as active as possible all day long. I take long walks, clean house, garden, swim, stretch. It helps but then the pain increases when I'm done. I am also trying hard to be optimistic despite my total change from the person I was before. 

The Butrans patch does not seem to be helping. I think the cymbalta has helped stabilize my mood but doesn't seem to address the pain. I have a small amount of lorzone that i take hoping it  will help during those flare-ups, but that barely does anything. Ice and heat are often used. 

I understand the pain won't  go away completely, but I'm not even close to being somewhat comfortable. Yes, people tell me I look good because i try hard hard to put on a good front, but inside I'm suffering terribly. It's wearing me down. 

Not sure how to end it.??????

Sent from my iPad

I think I would say something like....

I am wondering why are you so reluctant to give me something to help make my pain more manageable. I know that nothing will take the pain completely away but I know other people that have Fibromyalgia and chronic pain and they seem to have other medications that help to calm the pain.

I hope that I am making sense to you and please get back to me as soon as possible.

I would like to not to have to write this to you but I really do not know what else to do at this point.

Thank you very much.

I look forward to your reply.

Julz, How does something like that sound?

I think it sounds good, maybe end it with asking if your rheumie has any further ideas on how to help you. Usually asking for feedback from them helps open the door for any issues they want to discuss but don't know how to start. It's great you are keeping all of your doctors on the same page by discussing any changes one made with all of them. I hope you can get something done to help you become more comfortable.

Hmmm....more point blank than I was trying to be....guess I'm scared of her reaction....but I like the part about mentioning other people who have fibro that use other medicines.... Also ending is good.... Thanks Ang, let me give it some thought!!!

You have nothing to lose at this point. She is not listening to you now and you have tried a very nice approach. Sometimes we have to be a bit more direct. What have you got to lose? She can say yes or no. You have a 50-50 chance. Think about it and let me know if you need help. Hang in there Julz.

You can do this...and just know that when you send it out to feel confident in your wording and your choice to do so.

Julz, Also maybe you can write something about if she wants to call you that you will be more than happy to talk to her on the phone.

Shayluna~ I like your idea about asking at the end if she has any ideas that could help me...that way she HAS to come up with something....maybe not what I want but it's a start! Thanks! Angie~ if she says no, then what will I do??? I guess I could look for another doctor, but she is very nice..just not nice enough!!

Angel, you made a great suggestion for the ending and some good points about the doctor not listening.

Julz, writing an email to your rheumie was such a good idea. Sometimes it's easier to get a point across in writing because the reader has to give it their full attention. It gets so frustrating when the doctor doesn't seem to want to work with patients. I "fired" a couple of doctors before I found one that actually listened and tried to help me. Find a doctor that will work with you and listen to everything you have to say. I don't advocate switching doctors over a minor issue, but sometimes you have to if the one you have just isn't working for you.

Shayluna~ I agree completely about writing things down....it's much easier and you can think about how you want to say something. You also have a record of your concerns!! I'll give her a little more time because I like her, but if this goes on too long, I'm going to go out of my mind! With pain.

Ok..email officially sent...check that one off !