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Fibromyalgia
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Posted 10/8/2010 5:01 PM (GMT 0)
Hi everyone! This is my first post here. For months now I have been tested and re-tested for some type of auto-immune disease. My PCP is convinced that I have lupus as I have most of the symptoms and have had 3 positive ANAs in the last 8 years. I was finally able to see a rhuemy yesterday and she was amazing! After asking tons of questions and doing a thorough exam, she said that she needs more tests to determine the lupus diagnosis but that I definitely have fibro. Likely both. I suspected the fibro all along as I have every single symptoms that is listed on all the websites I have found.

She is switching up some of my medications and it will take a while to see the results of that since we are taking it slow to avoid any more problems.

My biggest issue aside from the horrible pain is the fatigue. Currently I work 50 hours a week and have a 50 mile round trip commute to/from work each day. Yesterday I actually nodded off while driving home. Scared me to death. Fortunately I have a sit down job where I am on the phone most of the day. While we are waiting for the medications to kick in, does anyone have any advice on how to tolerate the fatigue? As I am the sole income in the household, I have to maintain this schedule to make ends meet and keep my health insurance.

Currently I get up at 6am M-F and work until 5pm. Once I get home I lay down and rest for a couple of hours, then get up and have dinner and what not, then am in bed by 10:00 usually. On the weekends I sleep constantly.

My current medications are 20mg of Paxil, 150 mg of Trazadone, and 50 mg Elavil. The plan is to ween me off the Paxil over a period of time and try Effexr instead. I am to stop the Elavil immediately, and begin a low dose of Klonopin. As you can see, there is nothing there for pain and she is reluctant to give me anything.

This has been an ongoing thing for many many months and Im so tired of dealing with it. I welcome any suggestions that anyone might have to help get me through this.

Thanks for reading!

Stephanie

Post Edited By Moderator (Sherrine) : 10/8/2010 11:14:44 AM (GMT-6)

Posted 10/8/2010 5:23 PM (GMT 0)
Hi, Stephanie, and welcome!  I'm glad you found us and joined our family.  You do have quite a schedule, don't you?  It is important to keep moving.  This not only helps the pain but also the fatigue...somewhat.  You seem to be on a good sleep schedule during the week but sleeping the entire weekend might not be the answer.  Yes, sleep is important but there is such a thing as too much sleep!  When I was a teenager, I'd "sleep in" on the weekends and was more tired that usual because of it.  I, too, go to bed around 10 PM and get up around 6 AM but I do it seven days a week. 

 

Try not to eat too many sweets and carbohydrates.  These can raise your blood sugar and make you more tired, too. 

 

I take malic acid/magnesium supplements and they help with pain and fatigue.  I also take extra vitamin D3.  Many have deficiencies in this and it can cause more pain and fatigue, too.  

There are some gentle stretching exercises that I do sitting down.  These would be good for you, since you have a desk job.  This could help with pain and fatigue also. 

 

Be sure to check out Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot.  There are links to the stretching exercises I mentioned and also the vitamin and nutrient supplements, too.

 

I'm looking forward to getting to know you.  Don't hesitate to ask questions because we are here for you.  Hope to hear more from you soon.

 

Sherrine 

Posted 10/8/2010 5:34 PM (GMT 0)
Thank you Sherrine. Its good to know that Im not alone in this. Until recently I thought that fibro was one of those diagnosis' that was a way of saying they have no idea what is wrong.

I do get up and walk around often during my day. My doc prescribed Effexr and she said that it should work really well for me, but I found out my insurance does not cover it and it is very expensive. Does anyone know how to get around that, or recommend a similar drug I can talk to my rhuemy about?
Posted 10/8/2010 9:32 PM (GMT 0)
They have a generic Effexor now that is called Venlaflexine, my husband gets that now instead of the effexor, your insurance might pay for the generic. Its worth checking into. Welcome to our fibro family and feel free to ask questions, Vent or offer advice to others. Hope to hear from you soon.
Gentle Hugs
Shirley
Posted 10/8/2010 10:04 PM (GMT 0)
Thanks Shirley. When I went to the pharmacy last night they told me the generic was $250 and the name brand was $380 since my insurance doesn't cover it. That surprised me because I have pretty good insurance.
Posted 10/8/2010 10:50 PM (GMT 0)
Welcome, Stephanie! It's so hard to give advice about meds since we are all so different. If you're on here much, you'll hear the gamut. And though that can be confusing, I learn something almost every day that I can use. We are all in this bizarre illness together!

Debbie
Posted 10/9/2010 3:19 AM (GMT 0)
Welcome and wow, you do have quite the schedule! A normal (not to say you aren't normal) person would have a hard time with that! Just be very careful not to burn yourself out, especially considering you are the only income and obviously need to keep your job. The past few months, my doctor refused to reduce my working hours, until boom, Wednesday, my body just completely shut down on me while driving (no accident thankfully) but now I'm off work indefinately and lost my license! Just take care and listen to your body!

Krista
Posted 10/9/2010 9:01 AM (GMT 0)
 I really feel for all of you that have to work. I don't know how I would. Just babysitting my 2 yr old grandson is enough. I always worry about falling asleep on him.

   Usually Doctors are reluctant to give out pain med's. I just get tramadol but it does work pretty good and it's non narcotic. Ask your doctor.  If I need real pain meds I just get one of hubbys. he's a veteran and they hand out pain pills like candy over there. I really don't need alot though.

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