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...
Friday, September 21, 2012
Tuesday, September 18, 2012
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.
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.
Thursday, September 13, 2012
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
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.
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