Fibromyalgia Update: It Just Gets Worse?

Magnetic Resonance Imaging - Human brain side view

Magnetic Resonance Imaging – Human brain side view (Photo credit: Wikipedia)

July 30, 2012

My Fibromyalgia update is not full of rainbows and unicorns and fairy dust, it’s plunking along through a slow and painful process, apparently it goes on forever. Now, in addition to Fibromyalgia and the auto-immune disease, Hashimoto’s Thyroiditis I’ve had to deal with Nuerological issues as well. Imbalance? Ah yes, you know it well.  Now I have another doctor to include to my semi-annual repertoire  and I have a feeling it isn’t ending here. Just a feeling though…..

I’ve already had a brain and cervical spine MRI, the results were fine. My new Nuerologist (yeah, now I have one of those too) sent me a note saying that everything was normal given my age. “MY AGE” as if I don’t feel old enough. I do remember in the exam he exclaimed” So, what you are telling me is that you were basically a healthy woman until you hit the age of 50.” That grounded me, but it is so true. I know we weren’t supposed to trust anyone over 30 when we were young but no one said anything about falling apart when turning 50. You would think that would be written somewhere, or at least a warning sent when you are 45, (“ENJOY YOUR NEXT FIVE YEARS!!!!) not that we would have believed anything so preposterous.

Whoever says 50 is the new 40 does NOT have Fibromyalglia, I can pretty much bet on that. Tell a person who has Fibromyalgia that 50 is the new 40 and you are most likely to get a response like “my ass it is.” I couldn’t agree more.  I am so frustrated with different doctors and medications, I’m tempted (merely tempted) to talk to my Rheumatologist and see what he says about stopping Savella. I know, I’m ALL talk, Savella helps me, at least a little. However, my Rheumatologist put me on something called Topomax which he said would help me and I took it for many months.  I took it until my balance was so off kilter (even more than usual) and my forgetfulness was at an all time high AND I was getting tingling in my feet and hands; that scared me. One look at my medical history and the Nuerologist immediately said: Topomax: First two side effects are tingling and imbalance. Seriously, Did my Rheumatologist not know that? You would think that my Internist would be involved in some way but if it isn’t strep throat or a sinus infection, “it’s not her job.”

Once in awhile I have taken to using a cane, especially when walking our really strong 5 month old puppy, but with an 18 year old daughter, who embarrasses easily, I think I will use it more in three weeks when she goes to college. Wednesday, I am going back to the Nuerologist for results of my tests, I will see what he has to say. I’m bringing my husband along with me to listen; I am a horrible “listener” at a doctor’s appointment. I think it’s called the “white coat syndrome” whatever the doctor says, I seem to only remember the one or two bad words. My husband is much better at things like that than I am.

Next week I will go to the Rheumatologist and try to straighten things out. I would ask one doctor to talk to the other but in the past few years I have noticed they really don’t like to do that. I know, “LIKE?” I will insist, because the only one who can manage my healthcare, let’s face it, is me.

I’ll keep you posted.

Hope For Fibromyalgia-Medication (Follow-Up)

Various pills

Image via Wikipedia

For those of you who asked what drug regimen I am on I am happy to answer. However, I AM NOT A DOCTOR just a Fibro patient who has been going through this for over five years. You should have a Doctor, a Rheumatologist for Fibromyalgia. I also have Hashimoto’s Thyroiditis and sometimes doctors just look at thyroid levels. My thyroid levels were fine but I was still having the intense pain, so I went for different opinions. Don’t just go to an Endocrinologist if your Thyroid levels are fine and you are still experiencing ongoing pain, lethargy etc. Sometimes diseases can be linked together.

At the moment I am on Savella (drug for FIBROMYALGIA) and Nuvigil (was once used for late-night workers for narcolepsy). I also use Alleve at times (2) twice a day if needed but I mostly use that because I have foot problems, however, it may help Fibro problems also, too soon to tell. I also take Synthroid for my thyroid.

One of my friends asked which drugs I have tried. The list is so long it’s on my husband’s computer but I will post this now so you won’t have to wait for the other meds.  A partial list included:

Cymbalta, Plaquannel, Methotrexate, Arava, and Tramadol.

Good luck, let me know what is working for you and what is not.

The Sad Mom

wept

Image by the|G|™ via Flickr

I’m cold, terribly cold and I am not even outside in the twenty inches of snow we have. I’m in my bed with four comforters, a heating pad for my neck and shoulders and my feet are still freezing. I need to find those fuzzy socks that help tame the frozen beasts that are my irregular toes.

I’ve had Fibromyalgia for about five years now. In all this time I have tried many different medications and I have seen two or three Rheumatologists.  Still, no relief.  I am taking Savella and I am on the maximum dose and I swear it did work  for a while but now…..nothing. Does this happen with Fibromyalgia? I also keep getting new symptoms like my hands  and elbows and legs cramping in the middle of the night, symptoms that I was unfamiliar with but are now constant. I don’t understand this illness; perhaps nobody does.

Does Fibromyalgia encompass every symptom that has ever been heard of? Is it progressive? Why do I have more symptoms now than I did five years ago? I don’t know what to do. I don’t know which doctor to trust, if any. I also have an auto-immune disease called Hashimoto’s Thyroiditis which complicates my overall condition. I’m not feeling too lucky today; I’m just feeling sad, with no hope.

I have read countless books and articles, each one of them bringing a little piece to the puzzle but none of them fitting together to make a full-fledged picture. Ask ten doctors advice, you get ten different opinions. If you are lucky to get a doctor that doesn’t roll their eyes in disbelief, you consider that a win.

I would be open to new kinds of treatment , massage? acupuncture? diet? but I am not sure where to start. Not only do I not know where to start, I can’t pay for it even if I did.  Everyone “means well” and adds their opinion:  my mother says I should “just get out of bed and exercise more” when she doesn’t realize that getting out of bed is in itself is a painful exercise. My husband thinks I should go back on auto-immune drugs but I’m the one getting all the side effects and chemicals. Nothing seems to work. Nothing.

The only people who understand me are the people I meet in Fibromyalgia/Chronic illness chat rooms. I fantasize of a cure, an Oprah A-Ha moment but know that is unrealistic. I don’t like being the mom that has to be dropped off at the door of college presentations for my son and daughter, so I can sit down. I don’t like being the mom that sleeps a lot, when I can, and groans walking up and down our staircase.

I could easily start weeping but stopping would be that much harder.