Saturday, November 19, 2011

I'm still living!!!!

I'm sorry that it's been so long since I've posted here. I've been very sick for the last 6 months or more and almost bedridden. I've had a severe swallowing problem caused by severe acid reflux, in which my esophagus had actually shrunk. I haven't been able to get most of my medications down and it has caused me to be very sick. The pain levels were daily 9 or 10's and even with the pain meds that I could get down (oxycodone) it would still be about an 8. I haven't been able to do much of anything, especially for my family, which is what hurt me the most. I love my daughter and husband very much and they are very supportive of me. I hated having to load even more work onto their shoulders, or even worse, the work just not getting done. My daughter is only in the 1st grade,so she doesn't understand why her Mama can't play with her or why I'm always lying down. The one thing that I did make sure of to do though was to always go over her home work every day. I didn't want her falling behind in school because of me. Some days this was done from my bedside. Most often from my faithful recliner, where I live!
I had had the swallowing problem for over a year and I should of had something done about it way back then, but money is tight around here and I just didn't think I could afford it. I thought I could just learn to live with it. But the swallowing just kept getting worse until finally I couldn't eat or drink and especially not take my medications. The only ones I could get down were the tiny ones. The others that I HAD to take, like my blood pressure and diabetes meds, I would have to break into small pieces and take little bits of them throughout the day. This wasn't the way they were intended to be taken and my health did suffer for it, but it was the best I could do. Then when I finally did decide that I couldn't live with this condition and I needed to seek medical attention I had to follow the chain of command to get anything done. First I had to see my primary doctor, just to have them refer me to a gastroenterologist. Then I had my initial consult with the doctor who schedule an endoscopy for me 1 1/2 months away. They didn't tell me at the time where it would be done at so I assumed it was going to be at the hospital right next door to them. Seemed logical to me!!! Well, it wasn't and it was actually going to be at a place too far to drive for us and still be able to be home for my daughter when she got out of school. So I basically had to start ALL over again. Go back to the primary doctor , get another referral, blah, blah, blah. It basically took over 3 months to have the endoscopy done once I finally decided to proceed with it. By that time, I had already lost 30 lbs from not eating (which I was happy about!!).
I had the endoscopy done this past Thursday and I'm already feeling better as far as swallowing. They did do some biopsies of my stomach, but don't expect to see anything there. I have started back on some of my meds, but I can't start them all at the same time. I had to take it gradually, otherwise I might overdose or something!! The main med that I was missing was my neurontin. I had been on a dosage of 800 mg 4x day before I had to stop taking it. Right now I am taking 400 mg 2x day as of yesterday. I will have to stair step this dosage up gradually until I reach a level that is actually helping me again. Even the 400mg 2x day is helping a little. Funny though, I didn't realize how much it helped me until I couldn't take it and had to do without it. I'm just thankful to God that I can take it again.
And it's coming at a crucial time..........fall and the onset of winter. These cold fronts have been killing me with pain, stiffness, etc...... I have fibromyalgia, osteoarthritis, ankylosing spondylitis, sjrogens, migraines, and a host of other medical problems. These are all affected by the weather for me. I don't know about you.
Anyway, I just wanted to say I'm sorry for being gone for so long , but that I'm back and hopefully will be posting regularly again. I really love this blog and I hope you do too.


Monday, June 13, 2011

The Fog Days of Summer

After surviving the longest, wettest, coldest spring that I can remember in the Pacific Northwest, I am having trouble adjusting to the fact that it's mid June. Mid-June! Unbelievable. I'm having a hard time wrapping my head around the fact that summer is right around the corner. Our weather is certainly not doing a thing to convince me that it is truly the middle of June.

Unfortunately, the thick bank of fibrofog that has descended on me is right on schedule. Maybe even a little early. I can't figure out why but mid-June to mid-July is my foggiest season but it is. And it really bums me out. My pain and stiffness are easing up and the feeling of general malaise is dissipating, so I should be doing really good. Why, why, WHY does this time of year always get ruined by the damn fog?

In the past, I've suspected maybe it's the adjustment to the kids being out of school and not getting into a routine right away. Maybe it's the sleeping in a little later and not getting out to walking the dog as early. But the fog is here and the kids are not yet out of school so that can't be it. It also can't be the typical weather pattern of marine clouds in the morning and afternoon sun because we haven't gotten to that yet. (Although that does seem to aggravate my fog).

Whatever it is, I wish it would go away. I hate feeling like this. I feel so disconnected from everyone and even from myself. I can't focus my eyes. I can't process half of what goes on around me. I can't think straight (or at all sometimes). Life just doesn't seem...real. It reminds me of when you're halfway to getting drunk, when your brain slows down and it feels like everything is moving too fast around you and shifting around in jerky motions. (At least that's how I remember feeling when halfway to drunk - I don't drink anymore. I spend too much of my life trying to obtain mentally clarity to throw it away on substances that make me feel weird!)

Somewhere in the distant, fogged in corners of my mind, I can remember posting an article about supplements to take to help with the fog. (Or did I only think about posting it?) I think it's time for me to hunt down that article and try some of those supplements because I do not want to feel like this for the next month.

Wherever you are, I hope your weather and your fibro symptoms are treating you better!



Tuesday, April 26, 2011

A couple of good articles

Sorry I haven't posted in so long. Again. The last couple of months have been busy and difficult and I can't seem to find the motivation to do much of anything. It's something I'm working on, so I hope to post more frequently in the near future.

Here are a couple of interesting articles about fibro. Both of them validated some of the odd things I experience so I thought I'd share them.

The following article probably has the best description of fibro that I've read, so far. I was surprised to see difficulty in focusing the eyes listed. I definitely have that, but I hadn't read about it anywhere else. Anyway, I thought this article would be a good one to bookmark to send to anyone who wants to know what having fibro is like. (Or, even if they don't want to know but you think they should :)

Here is another one that explains (a little bit) the effect the weather can have on our symptoms. I definitely notice the worsening of symptoms in December and an improvement in April or May when it starts warming up. I also feel it when low pressure moves in. It's good to know this is normal!

Does the weather effect you in this way? What about low humidity, does it worsen your symptoms? (I'm just curious - it's very wet here so low humidity isn't something I have much experience with.)

Wednesday, February 16, 2011

An Interesting Article on Fibrofog

Finally, an article that recommends some medications and supplements that might help with fibrofog!

It lists tricyclic antidepressants as possibly making fibrofog worse but it seems like my fibrofog episodes are much less severe since I started taking amitryptiline. Of course, I'm only taking 20 mg and I'm not feeling much of a sedative effect.

I'm certainly willing to try some of the supplements. CoQ10 is expensive but it also helps with fatigue so a round of it might be worth a try.

Another thing I found very interesting about this article is that it talks about how fibrofog might be caused by all the extra signals the brain is receiving because of pain and fatigue. Something I've noticed is that I get brain fog from being somewhere noisy with lots of movement and different things going on. My brain essentially shuts down for the rest of the day after time spent in noisy, busy environments. I wonder if it's the same thing - the brain becoming overwhelmed with too many signals?

Does this happen to you? Have you found anything that helps with it?

Friday, February 4, 2011

From Fatigued to Fantastic - A Book Recommendation

I finally got around to reading From Fatigued to Fantastic by Jacob Teitelbaum, M.D. and I'm very glad I did. Dr. Teitelbaum has treated thousands of fibromyalgia patients and even suffered a bout of CFS/FMS himself so he knows what it's like and, most importantly, believes that CFS and FMS are real conditions. I thought his theories about the causes and/or underlying conditions make a lot of sense and the treatments are very doable and affordable (provided you can find a doctor to prescribe them). He does recommend products that he helped develop but, as he donates all his royalties to charity, I didn't feel like the purpose of the book was to promote his products. Another thing I really like about Dr. Teitelbaum's approach is that he recommends use of both traditional drugs and alternative therapies and he gives an overview of each treatment. The more I learn about fibromyalgia, the more I feel a variety of seemingly subtle and unrelated treatments is going to help more than that one magic pill that researchers can't seem to come up with anyway.

Dr. Teitelbaum recommends a SHIN protocol

S - Sleep: The Foundation of Getting Well

H - Hormonal Support

I - Infections: Destroy Your Body's Hidden Invaders

N - Nutrition: Optimizing Your Body's Ability to Heal

At the end of each chapter, there is a list of questions to answer and directions for marking off the treatments to create your own treatment protocol. Some of the supplements and natural treatments you can start on your own right away. I've been taking the Revitalizing Sleep Formula, Ribose and adrenal support formula and, although I'm still having migraines and flares, I'm feeling much better than I generally do in February.

After reading this book, I feel much better prepared for discussions with my doctor about possible treatments, I feel much more hopeful that I can and will feel better and I feel like I understand how declining hormones - progesterone, estrogen and thyroid - could be what's making my fibro worse.

If you'd like to learn more about any of the From Fatigued to Fantastic products or research, Dr. Teitelbaum's website is (Just a hint - you can find good deals on some of these products at Amazon.)

Friday, January 28, 2011

Feeling Like Garbage

February is almost upon us and, for me, this means the most difficult time of year has arrived. I feel like garbage every single day. The weird, congested, achy, sick feeling across the middle of my back always flares up this time of year and it's the hardest pain for me to deal with. It doesn't go away when I sit down like my other pains and it's often accompanied by a feeling of sadness. It's a very heavy feeling that makes it very hard to get out of bed in the morning. In addition to that, my legs, hips, shoulders, arms and feet hurt and I'm having daily headaches AND more migraines again. Oh, and fatigue too. I can't forget the fatigue. I live in a split level house and having to go up and down those stairs a dozen times a day is exhausting. I feel like I need to lay down on the landing for awhile to get the strength to make it up the rest of the stairs. It's not fun. I wish I could just go to bed and not get up until this part of the year is over with.

And the hardest part? This could go on for months. Sometimes, I start feeling better in April but often feeling better doesn't start until May. Last year, it was July.

It's very hard to keep a positive attitude when faced with months and months of feeling like garbage. But I am determined  to stay positive and be happy this year. I don't want to be depressed, angry and bitter on top of being physically miserable.

I suppose the first step is to stay in the moment and take it day by day, instead of focusing on months of misery ahead. Maybe I'll feel better sooner this year. I do have some new tools in my fibro toolkit. I bought the The Trigger Point Therapy Workbook and I've had great success in treating my hip pain. I think the weird pain across my back may also be caused by trigger points so I'm working to figure out which ones so I can treat them too. And, I've discovered that doing a short, easy yoga routine every day helps reduce my pain levels.  I've also read some good, hope-inspiring  books about fibro lately which I'll share more about later because I'm tired now, which I'm sure you understand all too well!