Acid Blah!!

Acidity is the most difficult for me to get under control. There's this amazing book, Alkalize or Die by Dr. Theodore Baroody. This book changed my life, but the alkalizing diet just doesn't seem to be enough lately. I think all my meds are actually causing so much acidity that eating nothing but avocadoes and drinking only water, I'm still ridiculously acidic. This seems to be really common for fibro fighters.

Symptoms of Acidity

• sore throat
• heartburn
• gas
• bloating
• chest pain
• nausea
• metallic taste in mouth
• hoarseness
• cough

Muscle Tension

Muscle tension, and spasms cause the most pain for fibromyalgia patients. There are a few tricks to try and keep tension down. Stretch, stretch, stretch! That's the number one way to keep it down. Of course, if you're like me, you can stretch 24/7 and still be stiff as a board. Today is one of those days. I swear my muscle are trying to jump out of my neck and shoulders! They're seriously like baseballs. If stretching doesn't work, then try taking Benadryl. If Benadryl doesn't seem to help, you can take Ibuprofen PM (which has Benadryl in it). If that's not strong enough for you, then you need to see your doctor and discuss taking muscle relaxers. Unfortunately, for some of us none of those work, then the only thing you can do is live with it, or sleep it off! But you can change your lifestyle to reduce the amount of muscle tensions and spasms.

1. Get a weekly massage
2. Take a hot bath or jacuzzi
3. Sit in a sauna
4. Drink more water (I'm talking at least a gallon a day)
5. Heat pads
6. Stretch every morning and every night

Rheumatologist

I went to the rheumatologist today for the first time since 1998, when I was 16. It was much better now that I'm 31 and she actually took me seriously! She's starting all over with diagnosis, and she ordered so many more tests than they did back then! They took the usual 7 vials of blood and a UA. But she also got me an appointment with a neurologist for May, Physical Therapy for next week for a full analysis and consultation, and an MRI of my brain to be scheduled next week! I can't believe how much more peaceful I feel, knowing that my doctor is actually taking me seriously.

If you were diagnosed with fibromyalgia before getting checked by a neurologist, or rheumatologist, try going back. Unless they rule out all muscle diseases, and arthritis, they can't be sure that you have fibromyalgia! 

Barometric Pressure and Inflammation

Snow, sleet, and rain bring pain, pain, and more pain! If you think that weather affects how you feel, you'd be correct. I noticed the first day of snow brought horrible chest pains. I thought I was having a heart attacked about three hours before it snowed, but my husband remembered the same thing happening last year and reminded me that we should wait before going to the hospital. I'm glad he did, because that would have been embarrassing! I looked back at my medical history, and every winter I went to the emergency room for severe chest pain and shortness of breath. I've been diagnosed with costochondritis, and get chest pain regularly, but the pain in the winter is so horrible that it brings tears to my eyes. It has been proven that lower barometric pressure increases inflammation, causing immobility and pain.

If you're like me, then this just mean more inflammation, immobility and pain. The pain can be horrible. Looking back, I also noticed that I can get through most of the year without any serious pain killers, but in the winter I need vicodin or percocet to function at least 2 days out of the week. When the barometric pressure rises, the pain goes back to the usual achiness and random stabbing. The lower barometric pressure feels more like stabbing and then the knife being twisted back and forth for hours. Below is a link to an awesome article about barometric pressure and it's effects on muscles and joints.

http://www.ehow.com/about_5081553_effects-barometric-pressure-joints-muscles.html

Guaifenesin Protocol and Counseling

I started taking Mucinex again. It is defnitely working. You can always tell when you start going through that reversal period, when symptoms get worse at first. It stinks, but it's worth it. My anxiety is insane, pain is excruciating, fatigue is frustrating, but I'm forcing myself to get out of bed and do things every day.

I have an appointment with a counselor for Monday. I'm really excited, because it's been awhile since I've seen one and I think it really helps. My fibro symptoms don't get better, but it helps me mentally and emotionally. Fibro is very difficult to deal with, especially for someone who is a thinker. Physical anxiety can cause and anxious mind, and the knowledge of how to do things combined with the physical inability to do them is obviously the perfect recipe for depression.

Treatments & Medications

Here is a list of treatments and medications that I've tried so far. Each one I tried for at least 3 months (or as long as I could), and many helped minimize one or two symptoms, but none of them are cures. I really think that a combination of the Gerson Therapy and the Guaifenisin Protocol will be the best, but it will be really expensive.

Aromatherapy
Accupuncture
Accupressure
Gluten Free
Dairy Free
Eat Only Fruits & Veggies
Raw Rood Diet
Massage Therapy (Weekly)
Amitriptyline
Flexeril/Cyclobenzaprine
Vicodin/Hydrocodone/Acetaminophen
Morphine
Percocet/Oxycodone/Acetaminophen
Protandim
Jacuzzi Soaks (Daily/Weekly)
Gerson Therapy (2 Week Home Treatment)
Reiki/Energy Healing/Chakra Healing
Ayurveda (Herbs/Diet/Pressure Points)
Yoga/Pilates
Valerian Root (Pills/Tea)
Herbal Teas (Valerian, Jasmine, Green, Chinese, etc)
Ginger (Pills/Tea)
Garlic (Pills/Tea)
Juice Cleanse
Chine Medical Practitioner (Arnica, Damp Heat Regimen)
Arnica Gel
Icy Hot
Heat Pads
Ice Packs
Maximized Living (Diet/T3 Exercises/Stretches)
Chiropractor
Meditations
20 Minutes on Treadmill (Daily/Every other Day/3 Days a Week)
Psychiatrist/Psychologist/Therapist
Walking (2 Miles Daily)
3 Hour Stretching Daily
Epsom Salt Bath
Apple Cider Vinegar (Drinking/Bathing)
Alkalizing Diet (Alkalize or Die)
Daily Hand & Foot Massages
Carrot Juice Daily
Green Drink Daily
Whey Protein/High Protein Diet
High Fiber Diet
Zero Protein Diet
Vitamin D3
B-Complex/B12
Vegetarian Diet
Pescetarian Diet
All Natural/Organic Diet
Carb/Starch Free
Iron
Liquid CalMag
Calcium Pills
Magnesium Pills
L-Glutamine
Pharma GARBA Chewables
BLISS Pills
Niacin
Lemon & Cayenne Pepper Cleanse
Drink Only Distilled Water
3 Day Fast
Sugar Free
Sodium/Salt Free
3 Day Fast
Rolled Up Damp Hot Towels
Reflexology
Serotonin
Nia Dancing (Once a Week)
Levothyroxine
Plexus
That Dragonfly Stuff
2 Glasses of Water with a Whole Lemon Squeezed In
Juice Plus
EFT/Tapping
Fresh Arnica in Hot Water
Heal Your Body Mantras
Liquid Raspberry Ketone
Low Glycemic, Low Gluten, Low Dairy, Pescetarian Diet
Toradol/Ketorolac Shot
Tramadol
Guaifenesin Protocol
Propel Zero Powder (Once Daily)
Tiger Balm

Amitriptyline & Guaifenesin

Since my anxiety has been out of control lately, and I've been snapping at my husband a lot, I started taking my Amitriptyline again. It seems to be helping for now. But it's always the same thing with all these meds--they work for awhile, I get used to them, I up the dose, and then I stop when I get to the highest possible dosage. At least it'll work temporarily.

The Guaifenesin really helped, but I didn't recognize the severity of my case. I guess there aren't a lot of people out there that can honestly say they've had fibro symptoms for 26 years. When I stopped taking it, during the cycle, all my symptoms got worse again. Now I'll have to start all over, but this time I'm not taking a month off. Screw the cycling, I'll need to keep an eye on my diet and eat only alkalyzing foods since Guaifenesin can cause acidity, but it'll be worth it.

Once I get my symptoms under control, I'll have plenty of opportunities opening up for me. I might even get to start my Hospitality Consulting business!

Good Days Really Good?

Today is a good day, but how good can a day really be for us? I just have the usual achiness, and a little anxiety. It makes me want to do everything that I can fit into the day, because I don't know how many days I have before the next flare. I do know that if I do as much as I possibly can, then I'll be feeling it tomorrow. I probably won't be able to move at all tomorrow if I do everything that I want to do today.

Every little thing is a debate. I have to weight the pros and cons, just like everyone else, but the greatest con is always the fact that I might not be able to move due to taking on too much. People are always saying that you're body will let you know if you're doing too much. That's not true if you have fibromyalgia. The body doesn't let us know, until after we've done it. Sometimes the pain comes days later, or it builds up inside us and doesn't rear it's ugly head until weeks or months have gone by.

When I have a lot of good days, I always manage to convince myself that this is it. The fibro is under control and I can live my life again. I get a job, and after a few days I am reminded that no matter how "under control" I get the fibro, it will always get worse. Even the call center position, where they let me work from home when I was in to much pain to make the commute, ended with me screaming and crying in agonizing pain for hours at a time.

Anxiety!!!

Good news, the pain isn't too bad today. It's just the usual achiness, a little worse this morning, but slowly fading into the usual achiness and flu-like pains. The anxiety, on the other hand, is getting out of control! I'm going to try taking a couple amitriptyline to see if it helps. I stopped taking it because I was taking it consistently for about three months but it slowly stopped working, so the doc just kept upping the dosage until I was at the highest dose possible (150mg every night). Eventually, it had the opposite affect on me, so the doc said I should stop taking it, but there was nothing stronger to give me. I've just been dealing with the anxiety ever since.

Anxiety is not what most people think it is. They picture someone with stress, running around like a psycho business woman with a million things to do. Anxiety is more like having electricity pushing through your whole body, and no matter how relaxed or controlled your mind it, the body is hyper active. Most people release this anxious feeling by doing some kind of fun activity. Swimming is the best way for a fibro patient to relieve this anxiety, but I don't have a swimming pool.

The big issue for the day is this cycle that I keep getting caught in. The anxiety leads to energy and wanting to do things, then I do things, and the pain gets worse, and then there's fatigue, followed by muscle tension and inflammation--and unfortunately the inability to move. Rocking back and forth is the best way for me relieve it with the least amount of pain. So, I'm just sitting here now, looking like an autistic child waiting for a playmate.

Stress, Pain, Fatigue, and Dreams!!!

The pain and fatigue seem to be fluctuating, but there is no rest for at least another two weeks. Stress is building, but our dreams are in sight. Not quite the dreams we had, but we've learned to change our goals to whatever is more attainable. Our new goal is to begin again in New York, surrounded by family and friends. I am slowly packing, then resting, then packing, then resting. I've been packing for over a week and I've barely made a dent in it. I'm going to try to pay a couple of guys $50 to load the truck for the move next Wednesday, and put whatever we can't take with us in the dumpster.

Sneaky Depression & Disability

I started having fibromyalgia symptoms at the age of 5, so when I hit 30 (April 19, 2012) I thought I had it beat. My symptoms were still steadily getting worse, but I was happy. I can't remember a single day of my life without pain, but until recently I also couldn't remember a single day consumed by depression. I always have a few small moments of happiness each day. I cling to those moments and make them last in my mind as long as possible.

Something happened this past year; something that I didn't even realize was happening until it was too late. Depression crept up and took over my life. Today I turned to my husband and said, "I've been really depressed and cranky all the time lately, I'm sorry. I'll try harder to be happier again." He said, "You've depressed for a very long time now. I love you, and I hope that this new move will make you happier." The move he was talking about is our move to New York. We're going to be staying with family for awhile, but hopefully we can really set down some roots and begin our lives again.

It's hard to stay happy when the government says that I'm not legally disabled because I can work from home, but no one wants to hire me because I can't work a steady schedule. I never know when I'm going to wake up and can't move. When I say I can't move, I don't mean it hurts too much, I mean that the muscles and tissue become so swollen and tense that I literally can't move them. Have you ever woken up in the morning after sleeping funny and the muscles are so tense that you can't move your neck to one side? It can take hours of stretching with intense pain before you can move that side of your neck. Now imagine that in every muscle of your body, and no amount of stretching relaxes the muscles. All you can do is take a cocktail of muscle relaxers, sedatives, and pain killers; sleep for 15-20 hours; and hope that it's better when you wake up. Sometimes I can wake up and still can't move, and it takes days before I can move again. The longest this has happened was three months. Unfortunately, according to the government it has to happen for twelve months before I qualify for disability.

The thing that gets me depressed is that I try so hard to work and make money, and there are so many people who don't try at all. They just sit back and get disability. I've been told now that if I didn't keep trying to work, I would qualify more. I have to be unemployed for over one year, which I was but couldn't afford a lawyer and had already been denied SSI Disability once, so I had to go back to work and I have jumped from job to job until I couldn't move for the past three months. Now I might have to wait another year before I can apply again. Why do people who don't even try deserve disability and those of us getting laid off left and right, working our butts off, deserve less?

Two More Jobs Down

That's right, I lost two more jobs in the past three months. I thought I was doing well, so after two years of trying various fibro treatments I went back to work.

The first job was at a hotel, my dream job really, as the Front Office Supervisor. I lasted about two months, but I ended up being more of a glorified Front Desk Agent then a Front Office Supervisor. This meant that I was on my feet 75% of each shift, which is not what I was expecting. I started having a harder time standing and walking, and my knees and feet swelled to the point of excruciating pain every time I put even the slightest pressure on my legs.

I had been applying for every call center position I saw the whole two years I was home, but having a job seemed to change everything. I got a position at a call center and put in my two weeks at the hotel. That didn't seem to help, so I woke up one day and couldn't move. I called in and then next day, I was able to move but I was incredibly weak and could barely make it down the stairs to the car. I called, and they let me work from home. That night, the pain was so horrible that I cried and screamed the entire shift. The manager monitoring my calls must have thought I was dying, but he was kind enough to keep it to himself. I gave up. It was only a matter of time before they asked me to stop working for them, I mean I couldn't even make it through the shift at home! I had already put in my notice to either work from home or stop working altogether, and they were just waiting for the date. I told them that was my last shift, and that was that.

My husband injured his arm at work, which doesn't offer workman's comp, and was out of work for almost two months while I was at the hotel. Then his Grandad passed away and he left for Georgia. I worked both jobs for two weeks and got my first paychecks from each one, which was just enough to pay rent. We were broke. Our lease was up, rent was raised, and we couldn't find anything in Denver in our budget. We had a choice, either live in our car or move back to NY and live with family. We leave a week and a half from today. I'll try to keep posting about whats going on and how I'm feeling.

Pain, Paint, and Pain Killers

This morning I started out with what I call my "usual" pain. It's basically that all-over body ache. I've been told that it's what the flu feels like, but I can't be sure. I can't remember any day without that ache. When I've had the flu, the only difference was that I had a sore throat and cough.

Anyway, I walked to Sherwin-Williams to get some paint testers for our new apartment. The Management Company said we can paint as long as we do neutral colors. Walking there was nice, but walking back with the box of supplies was difficult. It's only a few blocks, but I seem to get those sharp, stabbing pains more often and quicker than I used to.

The pain is hard to live with, but at least I'll live! Tomorrow my walker is being delivered. I'm hoping that with the walker I'll be able to do things for longer periods of time. Now, my muscles start to tense and spasm when I am out doing things. After only two hours of walking and shopping I'm now having stabbing pain in my shoulders and it's difficult to move my head. The walker should help keep the stress off my shoulders, and it has a basket that I can put things in. It should keep the pain at a steady ache, and help me keep the spasms down.

I know what some of you are thinking, "Why not just take muscle relaxers for the spasms and pain killers for the pain?" I used to do that, but I was up to 5 vicodin and 3-4 flexoril per day. Now, I take percocet and only half a pill keeps the pain to a minimum. I take half a pill when I'm going out to do things. Growing up, I used to think everyone was always in pain. I didn't know any better. Now I know that most people actually have days without pain. I wonder what that feels like...

The Bus :o(

Today started out great, but then I got on the bus. Since I don't have my walker yet, people assume that I'm not handicapped and some people don't consider fibromyalgia to be a handicap at all. I had to stand during most of the bus ride. I was squeezing the handles in the bus as hard as I could, but still was being tossed around like a rag doll. By the time I got off the bus, the muscles behind my knees were so tense that they were like baseballs and it felt like someone was stabbing knives into them and twisting. I stretched for about 20 minutes, and I'm still limping. I can't get my muscles to relax!! And now my hips and ankles are getting tense because they are working extra hard to make up for my knees. Ugh!!    

Anyway, I'm still here! I'm still walking, and still going to all my classes today. I'm also going to pack more for the new apartment. That's why I haven't been on the past couple of days. We're moving! The new place doesn't have an elevator, so that'll be tough, but the bus ride is shorter and once I get my walker I'll just have to walk down a few stairs and can use the walker the rest of the time. Soon, I will be completely independent. We don't have to be out of our old place until October 31st, so at least I can take my time. I got through the whole weekend without percocet, woohoo! It hurt like hell but it was totally worth that feeling of satisfaction-knowing that I was strong enough to make it through.

Living with Fibromyalgia

Welcome everyone! This is the first blog for Fabulous with Fibro! Be sure to check out my Facebook page. It's listed as my website, so you can just click the link. I guess I should introduce myself a little more for this first blog. I was born and raised in NY and moved to CO in 2004.

Getting Diagnosed

I was diagnosed with fibromyalgia when I was 16. The first time I went to the doctor they treated me like a hipochondriac, who overreacted to every little pain. They were finally convinced when I went into the office with neck muscles like small boulders. They were so tense that it seriously looked like rocks were under my skin and I couldn't move my head at all! The doctor sent me to a rheumatologist, and I was officially diagnosed with fibromyalgia. Since then, whenever I go to a new doctor or an emergency room, the first thing they ask is "Were you diagnosed by a rheumatologist?" 

More Than Just Pain

At first, the muscles in my neck were the only ones that I actually couldn't move. Until then, I thought that fibromyalgia was just about pain. I realized that there was actually a very real possibility that the rest of my muscles might tense and I wouldn't be ble to move them either. For almost the entire first 13 years I pushed and pushed. I pushed myself to go to school and to work for a few months-then I couldn't move any of my muscles for a few days. I pushed myself to do it again for a few months-then I couldn't move for a few weeks. I pushed myself to work 2 jobs when I moved to Colorado-then I couldn't move for a few days. I cut down to 1 job and lived on people's couches-then I couldn't move for a few days. I moved back home and pushed myself to work for 5 months-then I couldn'tmove for a few days. I came back to Colorado and pushed myself to work for a month-then I couldn't move fore a few days. I moved into the Hare Krishna Denver Temple and pushed myself for 8 months-then I couldn't move for a week. I had an accident, and I couldn't move for 2 weeks. I went back to work for a few months-then I couldnt' move for a few days. I moved in with my husband, worked, and took care of him while he was having seizures for a few months-then I couldn't move for 3 months. That was the worst. My husband got a job, woke up every morning before work and carried me to the bathroom, held me up so I could go, carried me to the couch and held me up with one hand while he fed me with the other, carried me back to bed and I laid there until he got home from work. After 3 months, I finally was able to start moving again. I worked for a few months-than I couldn't move for a few days. The cycle repeated for a few years. Now that I'm married, my husband works and I am going to school. I still get days when I can't move, but its no longer due to me pushing myself too hard. 

Getting Help

All that time, I tried a lot treatments, "cures", diets, exercises, medications, lotions, etc. Here is a list of what treatments, diets, exercise regimen, medications, lotions, and other products I've tried. The things that I still do, because they help, are starred...

1. aromatherapy*
2. accupuncture*
3. accupressure*
4. gluten free diet*(now do about 5 days a week)
5. dairy free diet*(now do about 4 days a week)
6. eating only fruits and veggies*(still do once a week) 
7. massage therapy (tried going weekly for a few months but didn't help too much)
8. Amitriptyline*(100mg every night)
9. Flexeril/Cyclobenzaprine
10. Vicodin
11. Morphine
12. Percocet*(limiting 2 per week now)
13. Protandim*
14. jacuzzi soak/hot bath*
15. Gerson Therapy (could only afford the home program for 2wks, and it helped so much that I would like to do the full program in Mexico for at least a month-but it costs $22,000)
16. Reiki*
17. ayurveda (various ayurvedic practitioners & diets)*
18. herbal remedies (Valerian Root, Green Tea, Black Tea, Chinese Tea, White Jasmine Tea, Raspberry Tea, Sleepytime Tea, Relaxation Tea, Bedtime Tea, Chamomile Tea, Ginger Tea, combos of all these teas, Lotus Tea, Tulsi Tea, etc.)*
19. various energy healings/healers*
20. raw food diet*(now do for at least 3 days a month)
21. juice cleanse*(now do for at least 1 day a month)
22. Chinese Medicine (like Arnica, and whatever else they've recommended)
23. Arnica Gel
24. Icy Hot
25. heat pads*
26. ice packs
27. yoga*
28. daily stretches (various types from various doctors)*
29. Maximized Living*
30. chiropractor*
31. meditation (various forms including but not limited to mantra, third-eye, relaxation techniques, om meditation, chakra meditation, Diamond Color Meditation, etc)*
32. personal trainer(s)
33. 20 minutes of cardio per day
34. 20 minutes of cardio every other day
35. crystal therapy*
36. chakra healing*
37. color therapy*
38. prayer
39. therapist for anxiety
40. swimming*
41. jogging
42. alcohol free*(I only drink alcohol about once every couple months)
43. sleeping pills*
44. sleep routine*
45. continuous stretching for at least 3 hours*(I do this at least once a week now)
46. moving into a temple and becoming a monk
47. Epsom Salt baths
48. Apple Cider Vinegar baths*(I try to do this at least once a week still)
49. alkalizing diet from the book, "Alkalize or Die"
50. studying scripture (Bhagavad-gita, Srimad Bhagavatam, Bible, etc.)*
51. candle healing
52. hand massages*
53. foot massages*
54. 1tbs of Apple Cider Vinegar in water, daily
55. carrot juice daily
56. green juice daily
57. caroot/apple juice daily
58. whey protein
59. vegetarian diet
60. pescatarian diet*
61. all natural/organic diet (no processed foods at all)-can't afford to stay on it anymore, but really helped
62. starch-free diet*(eat starch only 1-2 meals per week)
63. high protein diet
64. high fiber diet
65. fibro/fatigue/pain clinic
66. all natural/organic products*(I try to do when I can afford it)
67. Vitamin D3 (5,000 IU daily)*
68. B-Complex*
69. iron
70. Liquid Potassium*
71. Calcium*
72. Magnesium*
73. Liquid CalMag
74. L-Glutamine for digestion*
75. Pharma GABA
76. Bliss (Market America)
77. Niacin*
78. lemon/cayenne pepper cleanse
79. drink only water
80. only drink distilled water*
81. full fast (no eating and only drinking water)*-still do fast once a month
82. corn syrup-free diet*
83. sugar free diet*
84. sodium free diet*
85. wake up same time every morning*
86. round foam pillows for neck & back, at least 15min. per day*
87. rolled up warm damp towels under neck & back
88. HerbaLife
89. caffeine free diet
90. T3 exercises (Maximized Living)* 
91. reflexology*
92. thyroid medications (my thyroid is normal but the doctor thought I should try it anyway cuz it's helped so many people in the past)
93. Serotonin
94. "That Dragonfly Stuff" (worked pretty good for a few minutes, but I had to keep reapplying all day, and it never kept my muscles relaxed for longer than 20 minutes)- I would recommend it for less severe cases

When I say I tried these things, I mean I tried it for at least 3-6 months. A lot of people say, "Well maybe you didn't try it for long enough. Somethings take awhile to show results ya know." I know. I tried.

What I Learned

I've learned that although I have hope for a cure, I can't keep waiting for one. About 2 months ago I started a Facebook page called "Fabulous with Fibro" to share my experiences with the rest of the fibro patients out there. I know that somewhere there is someone who just found out that they have fibromyalgia. They're either pushing themselves until they can't move, or waiting for a cure. There is another alternative. I'm learning to live iwth the fibromyalgia. It's becoming a part of me that I can use. I can't drink alcohol, or do any drugs, because they cause fibro flares. Fibromyalgia has kept me in check, and it's keeping me on a spiritual journey. In many ways, my life is better than others that I have met because I have fibro and they don't. 

The Future

Stay tuned to this blog to find out what I'm still learning. I'll put tips on how to live with fibro, and share secrets of what really helps. I'll post what I'm doing, so that those who are stuck in bed can remember that it's only temporary. Every day that we are out living life is definitely worth a day or 2 of pain. I promise it gets better. Attitude is important, but everyone has days that they're depressed and hate life. That's okay. You're not in pain because of your attitude, you're upset because you're in pain. Don't let anyone make you feel like you are causing the pain, because you're not. You are amazing, because you wake up every day with the pain and keep going on with your life.