Fibro UnFriendly

English: A zombie

Image via Wikipedia

If Fibromyalgia was a mood and not a chronic illness, it would be grumpy, mean, hateful and cranky. It would be the scariest monster that rages everywhere, over my bed, not even bothering to hide but willfully taunting me in the open. Once constant factor is the weather and its changes, enemies.  I want to set up all the old green plastic soldiers that my son used to play with constantly and place them on the Batmobile and fire truck and police cars and surge through dividing lines. I want to storm the troops of Fibromyalgia pain and run them over completely. In my fantasy, all that would be left in their place would be peace and pain-free living.

I know, I’m living in a dream world but it is better than the one that I am living in now. At night, which used to be my savior, snugly asleep under the covers, has now become another battleground. Pain wakes me up, the newest pain is in my arms and elbows and I never feel well-rested. I try to ignore it at night but minutes later it wakes me up again. I imagine the enemy mocking me, sneering at me as if to say “you thought I was only going to appear once then go away for the rest of the night? HAHAHAHA” ‘That is what I was hoping for’ I try to mumble under my breath.”FOOL” they spit blood right back in my face.

Why do all these new pains seem to intensify after my visit to the Rheumatologist when the blood work is in? Liver function? A little high? Sediment rate? A little high?  Auto-immune disease? Yes, I have that too, an auto-immune disease of the thyroid, known as Hashimoto’s Thyroiditis. When is it too high and what do they do about it? A question that has never been answered so far. Should I take Tramadol, “you could give it a try.” I don’t want to give anything a try, I’m frustrated and tired and inflamed and I just want a definitive answer which I know logically I won’t get. The answer is “let’s recheck your blood in two weeks.”

I’m frustrated, even the small flight of stairs in our house seems insurmountable. My ten-year old dog can come up and down those stairs better than I can when I am in a Fibromyalgia Flare (if that’s what this is, we rarely know for sure.) I have to grab unto the shaky metal banister and pull myself up, hear myself groan out loud, the sounds coming from me are more animal-like than I would care to admit. I try not to emit these sounds when my children are home but sometimes I can’t help it. They know I have this illness, but it doesn’t mean I don’t want to protect them as much as I can.

I drove away their monsters when they were little, why can’t I drive away my own?

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.

UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

Various pills

Image via Wikipedia

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.

The Fabulous Fibro Spa and Resort

HibernationNow and Phylor’s Blog present: How a spa would be designed and managed by fibrologists:

Dear Guest:

Welcome to the Fabulous Fibromyalgia Spa and Resort! Whether you are staying in the main building or one of our cottages (the Pain Villa, the Fibro Fireplace, the Befuddled Bedroom, or the Nerve Damage Madness), you will find that we are equipped to handle any situation that may arise. While we don’t leave a chocolate on your pillow, you will find 2 Advils or Aleves and specially designed heating pads specifically for those tender 17 points. We know there are days when you don’t move around all that much, so rather than steps or long walkways, you will find escalators similar to those used a airports. Please hold on to the sides as we know that some of you may have balance issues.

You can check in at whatever pace feels comfortable to you. As memory problems can be an issue, you will be given several key cards (room number stickers available upon request) in case you should misplace one or lock yourself out of your rooms. At 4pm and again at 9 pm, our special welcome cocktail, the Fibro Fizz will be delivered to your room.

Each suite or cottage contains a memory foam king-sized bed, a large bathroom with tub and Jacuzzi. We have an array of unscented toiletry items available upon request at check in or with reservation. Beside your bed, you will find a white noise machine with peaceful sounds such as waves lapping the shore, rain-gentling falling, and other soothing sounds from nature. At your writing desk, you will find a supply of post-it notes in different colo(u)rs and patterns, pens, and stationary for making notes. There is high-speed wifi, HD cable, and a list of more than 200 movies on demand at no extra cost. You can search the movie database by genre, stars, director, screen writer. We are always open to suggestions for additions to our list that can be made available within 24 hours. Providing these in-room movies has been a big hit with our guests. If you don’t feel up to going to one of our many social areas, you can relax in the comfort of your own space and refresh your memory by re-watching classics, give your mind, rather than your body,  a workout with the action pictures (yes, some folks do move that fast), and since laughter is great medicine, our list of comedies is extensive.

For an additional $50 a night you can upgrade to one of our luxuriously padded rooms, conveniently located next to one of the dining areas. With walk-in bathtub, Epsom salts on demand, and doubly padded walls and floors, these rooms appeal to the fall and/or trip crowd.

Every hour is medication cocktail hour at the indoor and outdoor pools. Our staff will gladly prepare whatever combination of medicines, vitamins, and supplements suits your personal needs. Some of our more popular concoctions are the Savella Sling with just a hint of Tramadol,  the Lyrica Laser prepared with or without Xanax, the Gabapenten Gobbler, best served with a dash of morphine and the Oxycontin Overboard that contains over 7 medications, and 10 supplements.

Our dining facilities that include a formal dining room, casual café, and coffee bar are open 24/7 for your convenience. Our chefs have created a luscious array of soft foods for people with TMJ. You can choose from menu items, or request the kitchen make something special for you. Room service is also available 24/7. There is no need to get out of bed, the restaurant has a key and tipping will be added at the end

Our spa has all the latest in massage and relaxing techniques including hot stone therapy, therapeutic massage, breathing and relaxing exercises. We are always happy to deal with your bunions, your broken toes, your mangled feet. Included in your package are several free extras we call our Fibro Fix-up: a manicure and pedicure, hair cut, tricks to hide those dark circles from sleepless nights, and the opportunity to consult with one of our Fibro Fashionistas for the latest in lounging and sleeping wear. Our full Fibromassage offers gentle touching of those inflamed areas all over your body. We especially cater to the 17 point system of pain centers. Our staff has won over 25 first place ribbons at the Annual Feeling Fibro Massage and Comfort Olympics.

A recently added feature is our Fibro Fitness team. These well-trained and dedicated Fibro-Fit individuals wheel the exercise equipment to your room, carefully encase you into the fat-melting machine of your choice, and the machine does the rest. For those of you who don’t need to shed a pound or two, we have a special cheesecake and ice cream diet to ensure you get those needed extra calories. You can have these special meals delivered to the privacy of your own room, or you can join others on the thin side of healthy Fibro-Fattening Bistro.

One of our more popular features is the Xanax Room. Open 24/7, you can order the strength of Xanax you need to let those feelings of panic and anxiety just slip away. And the price is right: free Xanax! Adjacent to the Xanax Room, the Ambien Pre-bedRoom prepares you for a cozy, sleep-ful night. There are teas, comforting lavender and other scented oils and candles, and helpful staff members who will accompany you back to your room, and tuck you in for that nice, long sleep you have been looking forward to.

We have a fleet of electric scooters should you feel like a leisurely ride along one of our specially designed walkways that sweep themselves clean, so there is nothing along the route to jar your bones. We pride ourselves on our gardens, including the Zen garden should you feel the need to meditate outdoors, and a complete herbal garden for creating our special teas such as:

Morning Eye Opener, Afternoon Nap, Evening Relaxation, and Bedtime Comforter.

We have hotel hosts and hostesses posted every two feet so that when you lose your way because of Fibro fog and get lost, someone is always there to turn you around and point you in the right direction.

This is only a small sample of the information will find among the pages of your welcome kit. Please feel free to ask questions as many times as you need to while acquainting yourself with our facilities. Our aim is to give you as much pain-free, fibro fog-free time with us as possible. You are free to participate in any of our organized activities such as Bend and Stretch or Sitting in a Chair yoga classes, make use of our arts and craft room, or, simply lay back in the gentle hug of your bed, and let us do all the work for you.

Thank you for visiting the Fabulous Fibro Spa, we hope to see you again soon.

hibernationnow.wordpress.com and phylorsblog.wordpress.com

for Chronic Babes Blog Carnival