get my fibromyalgia under control

I am happy to announce, that I am finally working on a treatment plan, with a steady doctor. The last few months have been a whirlwind, blowing me in new directions with every doctor and therapist visit.

I found out, not too long ago, that we had a free clinic. Well, technically, I already knew about it. I knew that women went there every Wednesday for family planning and the like. What I didn’t know… Thursdays volunteers from the hospital met in the evenings to offer free health care and medications.

Now… years ago, I had awesome healthcare, complete with a knowledgeable family doctor, and a great rheumatologist. Despite the great care I had been receiving, eventually I decided to quite my full time job. I was in too much pain, and could not concentrate fully on the task at hand. I made so many mistakes, and cost the company quite a bit of money. It was really the best thing to do, so I set off on a journey to improve my health, and my relationship with myself and my family.

Shortly after, my family doctor had family issues of his own, and sent notice that he would no longer practice in the state of Ohio. I started looking right away for a new doctor, but was turned away so many time, I started to believe that I would never have a general doctors guidance again.

I did not fret at first, but months later, my rhuematologist announced that she would be leaving, to practice in a new office. One that did not offer health care costs on a sliding scale… one that would not cater to those without health insurance.

Now, I am not angry, life is a series of never ending surprises and change. I’ve become at peace with this. I was however, left without a regular doctor or a specialist to recommend treatment, medication or document the changes and progressions of my long term health conditions.

Eventually I ran out of medication, getting sparse refills with after care or the emergency room. I made call after call and set up appointment after appointment, only to find that the doctor was not comfortable treating me, or that they did not want to deal with the fact that I was a chronic pain patient, or were baffled or overwhelmed with the number of diagnosis that I deal with at such a young age.

This was frustrating, stressful, and made me feel that I was not considered important enough for the medical community to pay attention too. I wasn’t asking for much, I only wanted a little relief from the pain, and for prescriptions for thyroid replacement, so that my head wasn’t so foggy… I was willing to make a sacrifice, or a compromise, and let everything other health issue go, for those two things.

Without medication and proper care I found myself living day to day, in a brain fog, horrid mood swings, and pain that was not touched by over the counter analegics. My memory suffered, I could not concentrate nor remember things from the day before. I had no sense of time, and easily lost track of days and weeks. A torrent of depressive clouds that are just now, finally starting to clear away, that made day to day life impossible.

Anyway… back to the free health clinic. I found out, visiting my local job and family services, that Thursdays I could see a doctor, and that I could not be turned away, regardless of my ability to pay, or what health issues I may be dealing with. It was hard to believe, and after my nervous first visit, I could not believe that I had not known sooner. I was in shock, and very happy that we moved to this county. I would not have found such care in the county where we lived before.

After a few visits, and blood tests, a follow up was automatically scheduled at a local doctors office. I also started therapy at the mental health clinic for my depressive mood swings.

I have a long way to go, however, now have a treatment plan to follow, medications and monthly blood tests to make sure everything is going how it should be.

I am starting to wake up from the brain fog, and can remember more, day to day. I am more coherent on some days, and average 2 or 3 good brain functioning days a week.

I am receiving medication that is specifically targeted toward fibro patients, as well as another medication that targets nerve pain. I am left with a very strange sensation, in place of some of the pain, when I take it, but I am getting used to it, and it actually works. I have a way to bring my pain down to a tolerable level, at the cost of feeling drowsy, and somewhat drunk. Not the best trade off, but a blessing at the moment. I actually slept quite a bit the first week, but for the first time in years I am actually getting some decent sleep, as I am not waking in the middle of the night in agony. It’s good.

I suppose this is a very long, but very vague entry. I do apologize, but there is so much that I have missed I’m having a hard time filling in details.

It’s not just fibromyalgia that I’m getting under control, it’s also the many health issues that I have developed along with it, or maybe conditions that may have caused the fibro in the first place. It’s also about getting my life under control… to change the things that I can, for the better.

In another goal I’m working on, I will be creating something new every day. It is related, as it is part of a therapy plan that my therapist suggested, since I have a passion for art. I think it will be just as important as my doctor and therapist visits in order to get my fibro under control.

Any other fibromites out there incorporating art into your health care?

I am tired of being in pain all the time. I am tired of the headaches. I am tired of the burning muscles. I am tired of the depression. I am tired of the numbness. I am tired of cringing in pain when I get hugs from my children. I am tired of being tired.

I need to exercise daily, but carefully, so as not to over-extend myself. I always workout too hard.

I need to remember to stretch.

I need to get enough sleep.

I need to get a muscle relaxer that doesn’t aggravate my depression.

I need to not work so much.

I need to not be so hard on myself when I can’t keep up. It needs to be ok to say “no.”

I make all my food from scratch and eliminate all the foods that hurt my stomach like milk products. So far stirfry without broccoli has been the easiest :) I haven’t eliminated gluten, but I might have to.

I take Vitamin D instead of an anti-depressent, and it’s worked wonderfully.

My sleep is really messed up, I sleep 4am to 4pm, good thing I work on my own schedule (freelance/small business) and I make sure that I can. I still have the same sleep schedule no matter what, and over the holidays it affected my time with family, not to mention any future jobs I’m able to hold. Any suggestions? My sleep doesn’t seem to depend on exercise, and when I do yoga I’m not anymore tired. In fact, I should do yoga in the morning.

And about mornings…nothing, absolutely nothing short of my mother bringing me coffee to my bed wakes me up before my mind wants to and I haven’t a clue how to change it. I even have ‘get-up-and-go’ pills to take and I sleep right through them. I’m avoiding coffee like the plague because of it’s affecting on…well, everything, but it’s the only thing that works.

<3 I want to get fibromyalgia under control. I’m constantly in pain and I get random days where I can barely bring myself to do anything that involves leaving my room, today is like that. I don’t want to live in the shadow of fibro, I want fibro to live in my shadow. I’m going to do everything I can to work against it and finish this last quarter of high school and go on to graduate from college.
You know, it’s hard to believe that I have something that seems like a big concern to people. It’s also hard to believe that there’s no cure. It’s strange to me. No one in my family suffers from anything unless its brought on by their own minds and I’m the odd ball so I’m not that paranoid. Anyway, I have a plan to live happily with fibromyalgia and keep in under control.
1. I have to eat better, which I’m working on. I refuse to eat out unless its for a special occasion in which case it isnt at a fast food place.
2. I need to exercise more, which I am also working on.. I walk more than anyone else in my family and a nice bike trail is a block from my house so I can jog in a nice area when I have the time.
3. I need to get rid of depression and stress. Stress is a huge factor for me lately because of birth control messing with my emotions big time. Reading and simply laying in my room with candles lit works sometimes.
4. Sleeping habit is all messed up but I heard that regular exercise helps.

My boyfriend and I are taking on all those things together. He’s a great support for me right now.

I still have bad days, but my good days are outweighing them.

I am finding that accupuncture is helping again, so is taking the enzyme serrapeptase, and of course, losing the extra weight that I put on traveling is helping a bunch too, I am more active, which means that I have started walking more in the evenings.

As a result, I am off, almost all the medication I’ve been on in the last year. Which is making me feel even better.

- be aware of where I’m at in my cycle
- take supplements
- massage every two weeks
- exercise
- stop reading fibro message boards
- stay warm
- vent often

This is what I’ve discovered about a year after figuring out something was slightly off with me and 6 months after diagnosis. I’m one of the people who won’t take pharmaceuticals for this disorder, so it’s the above… or bust.

I can’t believe how up and down this “illness” is. I’ll feel damn close to normal one day and crash the next – and then stay crashed for days. I keep going on as usual because – well, I have to. I have to go to work, I have kids to parent, I have a spouse I’d like to enjoy.

I still, in a way, refuse to believe fibro is what’s causing all my problems.

Tonight? I feel like ass. My neck was really bothering me again, which then culminated in a terrible headache that started in the middle of my back and went to the top of my head. I feel like I’ve been beaten – I havent’ had one like that for a long time.

Anyway. I’m still trying to get a grip on what’s going on here – I’m far from being able to get it under control.

I’ll persist. My rheumatologist is an OK guy. He probably should do more bloodwork, but I have my yearly physical soon and I’ll ask them to do it.

Bleh.

Yesterday, as I was thinking about digging up some potatoes for dinner and sort of dreading the exertion (something I used to relish), I thought, there’s no way this can be it. There’s no way that I’m going to be feeling like this or worse for the rest of my life. There’s no way this is a real disease. I’m just lazy, undermotivated, being a big baby.

The people with fibro I’ve met have been overacheivers, fixers, do-ers, taking on more and more and more and always blaming themselves for things that don’t get done.

It’s hard to let go of that.

I dug up the potatoes.

Out damn fibro, out!