On the brink of diagnosis

One thing that helps me is not stressing too much. We've found out that stress makes things worse.

I use relaxation videos to ease my stress. I also take gabapentin which has helped with the skin pains for me.

I forgot to say that I have a lot of the problems that you do. My jaw is a killer. So are my allergies. And constipation, and roving pains. I remember I wanted to comment to you on that one. One day a spasm is on the left, then it's on the right. I draw on the diagram they give you on paperwork for a first time appointment. "Where is your pain?" Sometimes its a ridiculous question because the answers might be different tomorrow.
And apparently I can't remember how to spell, I have to read recipes one line at a time, finish the step, read the next line. I can't hold two recipe instructions in my memory, only one at a time. I even stop at a green light sometimes.

Post Edited (Sands) : 1/31/2016 9:22:04 AM (GMT-7)

I wish it were true for me that I would get tired of going to the doctor. Most of the anxiety I experience is health anxiety, so I'm much more likely to make an appointment than not, and for anything really. That is where I am finding difficulty trying to decide what is significant or not. I had middle back pain for about a month straight, and it felt like my back was going to crack in half. Made the appointment, couldn't be seen for another month, and by the week of my appointment my pain in the middle back was gone. So now I have had the same pain in my shoulder for about a month, and I don't have an appointment until next week, so we will see! In the meantime I am full of worry waiting for the appointment, and deciding whether or not this pain will be long lasting enough to even go to the doctor for it.

As for the jaw stuff, its my jaw and throat. It hurts right at the angle of the jaw, and right under the chin. I think a lot of it is muscle tension, but if I talk to much (this morning it was too much reading my daughter a short book), then my throat hurts to talk much of the day. How does one decide if that is a fibro pain, or something more?

Sands said...
I'm lucky that I've never had anxiety. (Well except for in grade school, on game day, when I first got on a sports team. It doesn't really count or compare). It seems clear that anxiety is part of the package that is the gift of fibromyalgia, for a lot of us. And I think that if may be pure luck, pure biology, who has anxiety and who doesn't. It is mentioned a lot.
As far as thinking about symptoms, I think it's very normal to focus on trying to figure out health issues. So many So Many! oddball things seem to go with fibromyalgia and for a while I wanted to figure each thing out.

After a while, and for this, reading fibro forums helps, you have a somewhat easier time of knowing what is normal in fibro. Many have been at Healingwell much longer than I, but my observation is that new members have one question after another, after another. It might have helped me to have this one-stop-shopping for answers in those early years. There are generous experienced people here.
And I'll add this one thing. If any new patient here is concerned that they want to go to the doctor for answers too often, well don't worry. The problem is eventually self correcting. You get so tired of that and it dies a natural death until you have to force yourself to make that appointment that you have been putting off.

Hi Tiger Tales!
Thanks so much for your thoughtful response. I went through and read those threads you posted, thanks for the information.

Its true, I am reluctant to take meds, period. The first doctor who diagnosed me had in the past denied existence of know medical disorders, and was two months away from retirement, so I was quite hesitant to do anything she suggested. My current doctor really listens and knows her stuff, and hasn't yes suggested medications (except for some bowel stuff because of my current constipation struggles). She isn't likely to dig into nutrient deficiencies though, and while we are trying alternatives to somewhat find a cause to my symptoms (we have discussed sleep studies, more physical therapy, and psychotherapy), she isn't very alternative and her suggestions will likely stop there and begin with meds to band-aid the symptoms I am experiencing.

I unfortunately live in an area that is HUGE on conventional medicine, and so my "alternative" options are very few. The functional medicine MD I am planning on seeing is about an hour and 45 minutes away from me. There are a few more about as far away, but in opposite directions. However, money is my limiting factor and she is the most affordable, so I am hoping that she can help!

I saw a NRT practitioner this summer (before fibro was suspected, and I don't remember exactly why I went..), but she had no medical background. She went through the testing, prescribed I think 3 pills in varying amounts and assured me that what she was giving me was find to take while nursing my daughter. $200 later I get home, and look at the bottles and they say do not take while nursing without a doctors supervision. Well, since she had no medical background I had a really tough time putting my daughters safety in her hands. I didn't take the pills, and I never went back. I've heard success stories about NRT, and I personally know people who swear by it, but I am just not convinced of the legitimacy of the technique. It is also off putting to me that SP is the only provider of the supplements. Another thing, is that it seems like those who go, and take the supplements never stop. Its a constant, life time thing. It keeps changing, and you keep shelling out the money. Maybe though, once I am done nursing and if I have the money I will try again, and this time go to a provider who has a DC.

Tiger Tales said...
Hi CountingStarsx,

You sound a bit like me...reluctant to accept meds from a baffled doctor, looking for alternatives, still digging so the the pieces of the puzzle will make a complete picture....Yeah, I can relate. You may want to read my intro thread. www.healingwell.com/community/default.aspx?f=24&m=3566107

I've seen an Integrative doctor (Functional Medicine). She was the one who tested Vitamin D levels and hormone levels to find out that I was low in Vit D and extremely low in cortisol. Getting Vitamin D levels up has made a big difference for me and for that I'm thankful. I believe a doctor of Functional Medicine will more readily test things that conventional doctors dismiss as unnecessary. For that, I find them very useful.

However, I found the approach of this particular Integrative doctor to be much like conventional doctors in that she suspected this or that disfunction and gave me several supplements that would typically correct it. There were some supplements I used that had no effect and one that even caused an adverse reaction. It was just similar enough to my experiences with conventional doctors that I began to feel like a guinea pig again. But that's just my experience with just one doctor. I chose her because she's the only one in my area. I had hoped that the wisdom of both conventional medicine and natural remedies would be a good marriage, but it didn't work that way for me. Perhaps you are in an area where better choices are available.

Currently I am having success with the protocol from a chiropractor trained in Nutritional Balancing. I detailed my personal protocol in this thread:
www.healingwell.com/community/default.aspx?f=24&m=3542934

Personally, I think the Fibromyalgia symptoms have been controlled by this protocol. But because I am having symptoms that do not relate to FM, my search for answers continues. I'm seeing a conventional doctor tomorrow to discuss the possibility of a mast cell disorder and request further testing.

Taking Natural Calm magnesium supplement has been very beneficial for my anxiety and sleep issues. I have also had success with using therapeutic essential oils for both.

I really feel for you and think I understand just how you feel. Members of this forum have been extremely helpful to me, and I hope we can do the same for you.

Kind wishes....

Hi Sherrine,
Thanks for your kind words. I've been praying a lot lately, and reading a lot of books about the power of positive thinking and giving your burdens to the Lord. I've been putting it into practice as I think of it, and it really does help. I think if I keep giving it my all I will see significant improvement. Thanks for affirming that.

I've read and studied quite a bit on fibromyalgia, both before and after I suspected having it. I've dabbled in alternative healing for many years, and am now going to school for a medical degree. So I had delved into it briefly a few years back. Since suspecting that is was what is going on in my body I have done much more research. Still, there were definitely some new and helpful things in the fibro 101 post. Thank you.

My mom and I were talking the other day and she was comparing my pain to the pain she experiences with her arthritis and tennis elbow. While we are similar in that we are both in pain frequently, I explained how much I would appreciate having predictable pain. Not knowing if you're going to wake up and have a good day, or if for the next three days it is going to feel like your sprained your ankle for no reason, or if you are going to have to deal with seemingly random pains in different places all over your body. She knows that if she does a certain thing with her body it will hurt in a certain way. I think that would be easier, but I guess it is still the same level of unfortunate.

I've tried Ativan for the anxiety, but it made me soul crushingly depressed and unable to care for my little girl, so that is out the window. I know that Dr. Google doesn't make it any better, so I actually just got rid of my smart phone so that I didn't have google at my fingertips 24/7. I've noticed an improvement in the few days since!

I'm uncomfortable taking a lot of meds, and my doctor knows it so she isn't prescribing anything right now. Sometimes when it is absolutely unbearable I take ibuprofen and it helps, so that is good. I saw you talking about the trigger point therapy book in another thread and actually bought the book this morning. Looking forward to using it!