Fibromyalgia 2013 – UPDATE

#Fibro – Awareness Day (Photo credit: sand625)

I’m being a bad patient. Yes, I’m confessing. I have a doctor’s appointment with a new rheumy (as us Fibro patients like to call them) a new rheumatologist in about a week and I think I am going to postpone it. Again. My old rheumatologist who I do indeed love, takes about three hours to get there and back, usually more, and this one is only twenty minutes away, I’m getting lazy. However, this is the height of flu season and I really do not want to expose myself to the “flu factory” that is my doctor’s office. It is not just one office, it’s two buildings of sick people for every specialty in the world. It’s a factory for any illness you can think of. In addition to having Fibromyalgia, I also have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis. Just glance at me and I will catch it.

This is a tough choice. Had I been feeling extremely poorly now with Fibro I would surely go for the appointment but the fact is I’m feeling pretty good. (I know, don’t jinx it) It’s the first time in many years that I am NOT complaining about aches, pains, moving or walking. SHUT UP! my friends will say but no, I cannot. Of course, I still have Fibro Fog to the extreme (really scary) and I am on enough medication to kill a horse but this last combination of drugs apparently is doing a little something-something. You guys understand…

Sure, I suffer from the tender points, but I don’t even count them, they are as natural to me as getting up in the middle of the night to pee. I accept it. And yes, I have all the other symptoms of Fibromyalgia: IBS, tingling, headaches, “yada yada yada*” but overall I feel better. I’m not asking for fabulous, I’m just satisfied with better. Better to a Fibromyalgia patient is like a miracle, BUT it is a miracle for however long it lasts. I think a lot of it has to do with my endorphins being raised quite a lot. Wish I could say it was from exercise but let’s not get too crazy here. It’s the result of medication, and no, not-self medication.

Right now, I’m just appreciating feeling a little different, in a positive way. I want my Fibro friends, and the newbie Fibrosmyalgia patients to know that it is, indeed possible. Don’t give up hope, maybe one day you will feel better too with the right combination of medicine. Keep fighting. I know there is no cure but you need to trust your doctor, or team of doctors and they need to believe in YOU.

For now, until it changes, I am happy, fine, content. Do I think it will stay like this? Probably not. Do I hope so, definitely: yes. But, as we all know with Fibro, we have absolutely no control over anything, which really is the hardest part of all.

Let’s wish each other a whole lot of luck.

If you have questions for me, especially those who are new to Fibromyalgia, feel free to ask, I’m happy to help.

*yada, yada, yada from Seinfeld

Hope For Fibromyalgia-Medication (Follow-Up)

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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.

Rx: Ginger Snaps

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I have self- prescribed a new medication that treats many of my annoying illnesses, my arthritic hands, my painful legs and general muscle and joint pain. You can find this medication at some drug stores and every grocery store. You don’t need a triplicate, you don’t need a physician’s signature and no one will think you are crazy if you fill this prescription; they will not look at you crossly if you double the amount. You don’t need to plead with your Doctor or Specialist and you don’t have to see their withering looks when they deny you the medication.

My new drug of choice, are ginger snaps. At first, I bought them on a whim. Then, seeing the improvement in my mood, I bought them again and I think they help more than the other six or seven medications that I am on for Fibromyaligia, or Hashitmoto’s Thyroiditis. Nothing else seems to work so I may as well get enjoyment out of this prescription.

I don’t have to eat ginger snaps on a full stomach or two hours before eating: there are no instructions. I eat them when I want. More importantly, I don’t resent this drug for not working as much as I do all the others. They are not covered under my insurance plan but that is alright, they are reasonably priced and always available. They are my treat after long days trying to adjust to a new, busier schedule. My husband is working full-time now while I am still feeling my same old, tired, achy self.  I have tried the generic brand instead of the name brand and I am completely satisfied with either choice.

The first bite, those of you with (TMJ) might think about putting the cookies in the microwave, for a while before digesting.  Nuke to taste. Or, just suck on them for longer joy and satisfaction. You can also dunk them in a lovely cup of Earl Grey tea, milk or coffee. There is no real overdose danger except your pants might feel a bit snug if you eat the entire box in one night but that side effect has never been reported (and who would report it??)

It stands to reason that this particular drug, unlike Oreos, Milanos, Twinkies, or Chocolate Teddy Grahams, is a guilt-free treat. My point is, I feel like they are entirely medicinal. My stomach feels soothed, my mouth has something to crunch on that is not  boring old celery and I get many different taste sensations in one bite. The first bite fills you with a very hard crunch, be wary of any loose teeth you may have. The “ginger-esque”  burn comes at the end: during and after your last swallow. The only problem I see with this medicinal treat is that they are highly addictive so make sure you have a box or two extra, hiding in your pantry or medicine cabinet.

I pretend/know they are healthy and I don’t even look at the calories, fat grams or carbohydrates. Here is my theory:  if they are not sweet, they are definitely good for you. If anyone else has down the same medical research on this drug or any other, I’d love to hear about it.

UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

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I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses  for over four years, with three different doctors and probably over 15 drugs in some combination or other.

I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.

Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.

Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the  brown overstuffed pillow.  The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.

I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number.  I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.

It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.

I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia  know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty,  and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.