hello everyone
September 12, 2009 12:37pm
It has been awhile....I was lost for a bit. Trying to handle it on my own....well not comepletely alone...I always had my BULL, my boys and my …
rebel64
11:18am, July 29, 2008
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About Me
rebel64
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About Me
Hey...I am rebel...I am married to a wonderful man and we have 2 sons {23 and 20} I was diagnosed with RSD {Reflex Sympathetic Dystrophy }in 1998. It is a nerve disorder that causes burning pain. RSD effects your muscles, bones, joints and circulatory system. I was diagnosed with Fibromyalgia in August 2009 {but was told I had it first}
Hey...I am rebel...I am married to a wonderful man and we have 2 sons {23 and 20} I was diagnosed with RSD {Reflex Sympathetic Dystrophy }in 1998. It is a nerve disorder that causes burning pain. RSD effects your muscles, bones, joints and circulatory system. I was diagnosed with Fibromyalgia in August 2009 {but was told I had it first}
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Interests
Enjoy making new friends and doing crafts.
Enjoy making new friends and doing crafts.
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Recent Activity
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Journal
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I am Confused
July 26, 2008 12:23pm
I am alittle confused....I went to the doctor yesterday...between my xray and my emg he told me I really look good. He knows the problems I …
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Hey everyone
July 23, 2008 10:38am
To start with I want to say "HELLO" to everyone. I know it has been awhile. I fell into a major depression and let the …
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It has been awhile
May 30, 2008 10:31am
It has been awhile since I have been here....I haven't been online that much and hurting alot. I came in to check on my friends and send a …
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Journal Entry for January 7, 2008
January 7, 2008 12:54pm
2007 ended kinda rocky and I had hoped 2008 would start better.
I had a real problem with depression this past Christmas...besides the normal …
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Hugbook
I’m With You
Always
Flower
Hi Robin! :) HUGS! :) We hope and pray, that all is well, and that you and your family are well. :) we are thinking of you all, and keeping you all close within our hearts, and in our thoughts and prayers. :) We are so very happy and delighted, to hear from you. :) Thank you so very much, for your wonderful hug. :) my family and i are doing well. :) We're really excited about the upcoming fall season, football season, and halloween season. :) We hope to hear from you soon. :) We send our love, warm friendship wishes, caring thoughts, many blessings, and lots of super big happy sunflower hugs, from CT! :) Take care, keep smiling and shining! :)
Hug
Hi. How are you feeling? Hope you're doing well and pain levels are low. Have you ever tried a sympathetic nerve block to help with RSD pain? I'm not sure if I asked you this before. Forgive me if I have. I have a terrible memory anymore, lol.
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Hug
Thanks for being here for me!! You are a constant in my life that I hope is always here.
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Support Groups
Close Chronic Pain
Hello to all...I am Rebel and I have RSD {Reflex Sympathetic Dystrophy} I was diagnosed in Dec. 1998. RSD is a nerve disorder that effects the muscles, bones, joints and circulatory system. I have endured Epidural Blocks, Sympathetic Blocks, Bier Blocks and Sub-Arecnal Blocks…I have also been to 9 different physical therapy places over the years. I did have 1 year of remission but due to some surgery I had to have I came out of remission, I am now stage 3 and still fighting. What started out as pain in my left foot now effects both feet, up both legs to my lower back, my left shoulder, both hands and also caused problems with both kidneys and my left lung. I now have asthma, IBS and suffer from TIA’s secondary to the RSD. The anti-inflammatory I was taking to help with the pain has eaten holes in my stomach, tried to shut down my left kidney and has now done damage to my intestines. Each doctor had their own ideas of physical therapy needs, drugs to take and each doctor told me how I was going to end up in a wheelchair when they met me but I just keep fight and I am not in a wheel chair yet. Through the years I have been told that I have called RSD, CRPS {Complex Regional Pain Syndrome}, and now they call it RSDS {Reflex Sympathetic Dystrophy Syndrome}…..they can call it whatever they want…I just know it hurt.
Treatments
- Chiropractic Adjustment Not Working
- I was told not to try because my bone break very easy.
- Hydrocodone Working / Worked
- This is the one med I can take on my bad days and take the edge off the pain.
- Lyrica Not Working
- never did me any good.
- Mobic Somewhat Helpful
- stopped doing any good after a few months.
- Oxycodone Not Working
- caused too much nausea
- Relaxation Working / Worked
- I use candles and massage to relax my muscles and ease my pain.
- Aqua Therapy Working / Worked
- I have done water therapy in and out of PT. My insurance only pays for so many visits a year, so the therapist showed me what to do to keep my muscles from wasting.
- Cymbalta Working / Worked
- amazing the difference it has made
Close Asthma
Type: Adult AsthmaI was diagnosed with asthma in 1999 after a bout of pneumonia.
Treatments
- Advair Not Working
- Didn't work very well for me..and trigger ongoing battles with thrush and yeast infection in my lung and stomach.
- Breathing Exercises Working / Worked
- I use a Voldyne 5000 ....helps eae my breathing sometimes.
- Inhaler Working / Worked
- I use an Albuterol inhaler when needed for bad asthma attacks
- Singulair Working / Worked
- Taken daily it helps alot with my breathing and I have less asthma attacks.
- Foradil Not Working
- Never helped me any and caused problems with thrush.
- Azmacort Not Working
- Worked for a short time to help control wheezing but caused more problems with itching in chest.
- Zithromax Working / Worked
- Only antibotic that helps when I have pneumonia.
Open Irritable Bowel Syndrome (IBS)
I was told most of my life I had a "nervous stomach"...I was finally diagnosed with IBS in 2006.
Treatments
- Avoid Certain Foods / Chemicals Working / Worked
- I had found that corn and small seeds {poppy especially} upset my system.
- Zelnorm Not Working
- Tried at first and never helped.
- Bentyl Working / Worked
- I was put on this last year and it helps me so much.
Open Urinary Incontinence
I have suffered from Incontinence and UTI's as long as I can remember. In 2000 the problem became worst due to my RSD. The incontinence and bladder spasms I have seem to be connect with my IBS.
Treatments
Open Reflex Sympathetic Dystrophy
I was diagnosed with RSD in 1998, a potato fell off a plate and landed on my left foot. The doctor I saw thought I had a stress fracture and confinded me to bed for almost 2 months. By the time I changed doctors and found out it was RSD I was already in stage 2. I have been to 9 different physical therapy places over the years, each new pain doctor had a diffrent idea for PT. I did have 1 year of remission but due to some surgery I had to have I came out of remission and I am now stage 3.
Treatments
- Neurontin Not Working
- It never helped very much except by making me feel like a zombe and destroyed some teeth.
- Oxycodone Somewhat Helpful
- Woked for a few months and then stopped working at all.
- Hydrocodone Working / Worked
- helps take the edge off the pain
- Aqua Therapy Working / Worked
- Most of the PT I have gone to over the years is water therapy...it has helped me alot and kept me moving. Thankfully with new insurance i am back in PT
- Cymbalta Working / Worked
- amazing it brought pain level down to a dull roar
Open Hypoglycemia (low blood sugar)
I found out I was hypoglycemic when I was 13 and I passed out in the bathroom. I have to watch what I eat and I make sure to eat every few hours.
Open Depression
Type: Clinical (Major) DepressionI was diagnosed with depression 7 years ago due to my chronic pain from RSD. I have been tried on a few things through the years.
Treatments
- Effexor Somewhat Helpful
- It helped for awhile and then started upsetting my stomach too much.
- Elavil Somewhat Helpful
- It helped me to sleep but caused back "hangovers". Doctors decided that bad out weighed the help and pulled me off after a few months.
- Lexapro Somewhat Helpful
- Seemed to work very good but after a month I became impassive and unresponsive.
- Psychotherapy Working / Worked
- I have worked with doctors over the years. I consider myself more frustrated then depressed because of my pain.
- Relaxation Working / Worked
- I use soothing sounds, candles and gentle massage therapy.
- Cymbalta Working / Worked
- Helped more than i ever expected.
Open Sleep Apnea
I was diagnosed with sleep apnea in 2004. I did the sleep study and they tried to set me up with CPAP but found I couldn't breath through my nose at all. I was refered to an ENT and he found I had a severe deviated septum. He did surgery to fix it & hoped that would help with my sleep apnea. It did help for about 6 month, I started to snore & have headaches again. Insurance felt I had been fixed and refuse to cover another sleep study or a cpap.
Treatments
- Levofloxacin Somewhat Helpful
- helps to dilate nasal passages and help me breath easier.
Open ADHD / ADD
I didn't know I had ADHD until my oldest son was diagnosed with it in 1991 {I was 27} Growing up I was told I didn't try hard enough & was put in a private school because I "played" too much in public school. I was given Valium to help keep me calm in school. I learned to organize myself and worked with both my son's who are ADHD.
Treatments
- Writing Working / Worked
- I make a list when there is something I need to get done so I can stay on task. If I find something else that needs to be done it is put on another list.
Open Fibromyalgia
My doctor told me that they determined I have Fibromyalgia. I have had RSD for 11 years and find out I have Fibro too. Infact he says the Fibro was first.
Treatments
- Cyclobenzaprine Working / Worked
- It helps with the muscle pain and twitching at night.
- Cymbalta Working / Worked
- I have been on cymbalta for over a year for my RSD....it is helping soon.
- Lyrica Too Soon to Tell
- I have only been on it for alittle over a week...was god at first.
- Walking Working / Worked
- It does help some...when I feel up to walking.
Open Shingles
I have questions...I had shingles a month after chicken pox when I was 19. I was told they went dormant and triggered fibromyalgia when I was 33. That lead to RSD.
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