new and I need some advice

I just stumbled across this forum and it is exactly what I am looking for. I am in desperate need of some advice before I go for a doctor's appointment on Monday, April 6th. I will apologize now because this post will probably be long, but I want to provide as much information about myself so that those of you who can offer me some insight will know where I am coming from.

OK, first of all, I was diagnosed with fibromyalgia in August 2007. Personally, I think that I have had it MUCH longer, but after years and years of going from doctor to doctor, I was finally properly diagnosed. I have struggled with massive headaches since 1992. I have had IBS since 1984. I have sleep apnea and started treatment in March 2007. I have a hypothyroid and have been treated for too many years to remember! I have also had several doctors tell me that they have never had a patient like me when it comes to stress. I don't even know that I am struggling with something stressful until I get sick. That's been going since my teens. So, with all of these issues, from what I understand, they are all related to fibromyalgia.

This leads me to the second part. When I went to my doctor, who is a rheumatologist, he diagnosed me and starteded treatment. These are the meds that I am currently on:
Lyrica 300 mg 2x a day-------------------for fibromyalgia
Cymbalata 60 mg 2x a day---------------for fibromyalgia
Librax 1 at PM; but up to 4 PRN bad gut-for IBS
Levoxyl 100 mcg 1x a day----------------for thyroid
Elavil 75 mg PM----------------------------for headaches (this was actually one of the first meds that helped my headaches in the beginning)
melatonin 3 mg PM------------------------for sleep
Vicodin 7.5/750mg------------------------ for pain. I have been on pain meds since probably 1995. But, with the pain I am in now, it seems like these meds aren't working as well. I truly don't want to go to anything stronger. It seems like I take at least 2-4 a day depending on the pain.
I also take other supplements------------vitamin B complex; Vitamin E 400 i.u.; Calcium 600 mg; Magnesium 200 mg

WHEW!! All this information tires even me out!! So, this leads me to my next issue. I have been struggling quite a bit lately. I am thinking it is a really bad flare. I have had headaches that have been so bad, it feels like there is hot lava in my skull. No kidding! Not only is it pain, but it burns! I have had these several times before, but when they hit me and I can hardly hold my head up and taking 2 pain pills doesn't even touch it, I just don't know what to do. I also have been having alot of pain all throughout my body. It feels like my body is weighted down and my joints hurt so much I can hardly stand up sometimes. Once I get myself going, I feel like I am 147 rather than 47 years old. I just feel so OLD!

I don't know what else I can do really. I guess that this is just something that I will have to deal with the rest of my life and try and live with it. I'm usually not so pessimistic, but when you are in chronic pain and it is unrelenting, I don't care who you are--it WILL get to you. I'm sure that everyone of you reading this post know exactly what I mean. This illness is not for the faint of heart!

Thanks so much to those of you who took the time to read my post. I especially look forward to those of you who can offer some advice or suggestions as to what/how I can explain this to my doctor on Monday. He is a really good doctor and he listens to me, so I just need to be able to come up with good questions or have some better insight into this. With the brain fog, I don't always articulate exactly what I want to say.
Thanks again and God bless!
Julie

Julie,

Welcome to the fibro family. This is a great place to get all kinds of great info, talk about your own personal experiences, or just vent if you need to. Whenever a newbie comes along, someone always suggests that they read "Fibro 101" at the top of the main threads. It really is informative.

LOL-don't worry about leaving long posts. If you're anything like me, you have a lot to say and maybe you also have no one around you who will listen. The great thing about the people here is that we will listen. I have met some wonderful people here, and if you are as lucky as I am, you may even meet some lifelong friends.

So, yeah, I really can't answer any of your questions, LOL. Sorry! I did want to welcome you and make you feel comfortable. Unlike a lot of forums, we really TRY not to be judgmental (although, we all have bad days) of each other.

Anyway, welcome. Join the family and tell us a little about yourself. We have members from all over the US, and there are even a handful of people from all over the world.

Hello Julie, and welcome. Don't worry about the long posts. If you are like me, you feel relieved to see other people who feel the same as you, and are glad to find someone who can sympathize and listen.

I've never tried Lyrica or Cymbalta, so I don't know how those meds work. Surprisingly they've never tried me on those. I take Tramadol, Flexeril and Trazodone for pain. Yes, all those for pain. Usually 4 tramadol (2 if its a good day) during the day and 2 flexeril and 2 trazodone at night works for me. I also take Topamax for headaches, just as needed when I get one, an am still looking for something that helps for stress (when I get really stressed out I get in lots of pain)... but if I were you, I would see about getting higher doses of the medication you are already on before trying new meds. Tramadol (ultram) seems to be a popular choice among doctors for fibro pain.

Thanks to all of you! it is great to know that there is a place like this where people know exactly what you are going through. Kelly71 suggested I tell you guys a little about myself, so here goes. I am 47 years old and I live in the Houston, Texas area. I have been married to my wonderful husband for almost 25 years (November 21st). He is really supportive and loving. He had taken over so many things that I am no longer able to do. I know most men wouldn't do that sort of thing, but my Honey is just wonderful. We have 2 children. Our daughter will be graduating from college in May. She plans on being a Spanish teacher in high school. Our son will be graduating from high school in June. He's the comedian of our family. At this point, he doesn't know exactly what he wants to get into, so we are praying that the Lord will give him some direction and that our son will follow that.

I am unable to work because I just don't feel well enough. Like I said in my first post, the headaches that I get are so bad at times that I just don't know how much more I can take. I also have the overall body pains and aches and fatigue. The headaches didn't start until I was in my early '30s, but I have had the body aches since I was a child. I remember being taken to a couple of doctors and they said that I had "growing pains" and that I would out grow them. Well, I never did. When I was in my teens, 20s and 30s, I would get these body aches, especially when I was tired. In about my early '40s, these pains became a constant symptom--no matter if I was tired or if I woke up first thing in the morning."

One of the most ironic things that I find in this illness is that it is one with chronic pain; but, at the same time it tends to lower your pain tolerance. Has anyone ever noticed this? I used to have a really high pain tolerance. I had a hysterectomy at 28 and didn't have one single thing for pain. Had gallbladder surgery and didn't have anything for pain. Had a breast tumor removed and got a really bad infection in my breast that took 3 months for it to totally heal--didn't have anything for pain. But, now I notice that just getting blood taken hurts. I never used to, but now it really does. I can't figure that out. The only thing that I can think of is that my pain tolerance has been drastically changed.

Thanks again for all of the positive and great feedback. I will definitely make this place home because no matter who we are or what sort of support system we have, NO ON can understand this illness except someone who has been there themselves. My husband is always saying to me "I understand." I tell him, "No you don't because you just can't know what this is like unless you have it yourself." So, thanks to all of you who are "in the trenches" along side me.

Julie

Hi, Julie, and welcome!  You have come to a good place with great people willing to help one another AND we really do care about each other.

My, you do take a lot of medicine and many on here do too.  Everyone's pain is different.  I use malic acid/magnesium supplements and they have helped me with pain and fatigue.  They don't help everyone but many members have had good results with these.  In the Fibro 101 thread...the second thread on the forum...I wrote a post all about this and how it works in your body.  Perhaps this would help you and you could get off some of the medication.

I also take vitamin D.  Many with fibro have a vitamin D deficiency and that can cause pain and fatigue, too.  In the past week there have been several posts about vitamin D so go back and check those out and see what you think. 

I rarely have a headache but I haven't heard of a "burning" headache before.  I would definitly get that checked out.  It could be fibro, since we do get burning in our muscles, but I know I'd want to be sure.

But, be sure to read the Fibro 101 thread.  There are links to all sorts of good info about fibromyalgia and that could help you with your doctor's appointment.  There is a link to a list of symptoms, too, and that could help explain what you are feeling.  Also, here is a link to a pain journal.  I think Chutz posted this a while back and I saved it.  This can help.

 http://www.painfoundation.org/Publications/TargetDailyLog.pdf

And here is a link to a pain level chart that will help you with that pain journal.

http://www.holyredeemer.com/hch-hospice-pain-management-pain-level-chart.html

It's easy to get down with fibro because of the pain but keeping a positive attitude really is a plus.  Try looking forward to each new day instead of dreading it.  We do have good days along with not so good days, so plan on it being a good day for you.  Do some stretching and some light exercises to get those muscles more flexible.  Make a simple goal for your day and try to accomplish it.  You will feel very good about yourself when you do.  It can be a really nice dinner for your family or mopping a floor.  You do need to pace yourself.  You can't do everything in the same time frame as you used to before fibro, but it still all gets done!  Recruit some help from your family, too.  Any help is great!

Anyway, I'm so glad you are here and have joined in.  Let us know how your doctor's appointment goes!

Sherrine

Hi Julie-

Marlee has a good idea in making a few notes and taking them with you to your appt.  That way you can make sure you cover the big things and not get bogged down in the little things. 

I think a lot of us have left the Dr's office and then said, "Oh yeah, what I REALLY wanted to talk about was ....."

Almost forgot - we lived in Pearland for several years before we moved to WA.  I like the cooler weather.  But B. is always cold and hates it here and misses the hot weather and "southern friendly" people.