Reflex Sympathetic Dystrophy (RSD)

[lighthouse1]

I wish I had all the answers for you. I really don't know if anyone has died from this or not. I also heard that some people have committed suicide due the severe pain and agony this has caused them however don't actually know anyone either. I was diagnosed with RSD three yrs ago after spraining my right ankle on Thanksgiving. Yes, I can say this has spread from my rt ankle to both my toes, feet, legs up into my hips and buttock area. I now have probs in both my hands and fingers and arms more prominent in my left fingers, hand and arm then my right however it is prominent in my rt toes up to hip. Since my RSD i have been diagnosed with two bulging disk in my back on the l4.l5 and fibromyalgia, neuropathy and now Inappropriate Sinus Tachcardia and they say it is due to the RSD or due to my Central nervous system. I feel like this has took over my whole entire body as I have pain all over in differant parts of my body or everywhere depending on the day or minute to minute. I can only tell you to that some days the pain gets better and it does go dormant and then other times it is progressing and so excruciating I wish I could just go to sleep quietly and not wake up. My two kids, brother, friends and family is what keeps me going. I try to be thankful as much as I can what I can do rather then what I cannot do and when I hear or see people worse then me, it make me realize I am not alone which keeps me going. Some days like this week it has been extremely difficult. This week I have been PMS really bad and in alot of pain with my hands and arms, back, toes and feet and then I see my specialist to find out my other dr wants to restrict or take away my driving from me which devastated me even more. As it is I lost my job a yr ago, cannot work as I am disabled however still fighting my disability and most of the time I don't drive not because I can't but because I don't feel good enough to even go out of the house and told I will have it restricted or taken away even more just made me want to die... This is the last little freedom I have left....Sometimes it is hard to live with this however I know for my kids sake I have to keep fighting if not for them but for them.. This is a daily struggle. I do think it is normal to be angry and sad and going through what you are going through as look at what you have to deal with now, you have lost, etc. We will have stages to go through as we try to live with this and heal and maybe one day there will be a cure and this will pass..

[ERZ]

How to live with this: #1. Breath deep. #2. Create an emotional support system outside of your loved ones who knew you before you were in agony -- people who can validate your perceptions. With the diagnosis—and a successful treatment course that includes Enbrel, a medication used to treat arthritis and psoriasis— Paula Abdul's failed treatments were over (including 12 surgeries and heavy medications that people chronically nauseous, sleep-deprived and "loopy").
A clinical trial using pulsed electromagnetic therapy on acupuncture points for 6 weeks -- showed 100 percent relief on both RSD suffers.

[ttuck]

Hey folks:
Been a while but, still hanging in there. I think I've lost about all I can and I am just starting to concentrate on moving to a new career.
In respect to the treatments, it took a little waiting but I have just received a double RFN treatment.
L1...L4, and six point on the left knee. I have found a reduction of about 25% in pain and it makes it easier to sleep.
I no longer take the medications that make you loopy, and am making great strides in overcoming the anxiety and mood affective states that accompany third stage RSD.
My wishes to you all are for peace and pain free days...take care.

[G0J0G0]

Hi all.
These suggestions are great, but one caution here; remember this disease is unique to each sufferer and what works for me may not work for you and vice versa. I still find desensitization and physical therapy are beneficial to long term treatment. These are not a be all end all, but they do help. The one thing I do not recommend is a radio frequency ablation, or lazer frequency ablation; both are supposed to kill the central path to the nerve and there by shut the communication link from the spine to the nerve endings. It is not effective and caused more pain, more intense flare ups, and makes the pain overall more difficult to treat. I had this done in February 2008 and the pain increased substantially, and nothing has been the same since...

Hi TTuck, how are you; like you been hanging there? If you like I would like to chat with you some time. Many blessings to you and yours. gojogo.

[ttuck]

Hey GOJOGO:
Truthfully, my life has been a type of suspended animation, so I guess I was hanging there for a while.
I've been doing a lot of meditating and trying to rid myself of all the negativity that has built up over the past four years.
It seems for quite the time everywhere I turned was confusion and stalling, I have absolutely no support network to speak of, slipped into a deep depression, took my final slaps in the last few weeks.
Everyday I get up and I look at this picture I have posted on my door. It has a great motivational saying.."When you have lost all that you can possibly lose....Character is what remains."
Its hard to do this on my own...but I guess there is a plan for all of this, and the greater good will prevail.
Pain is an interesting enemy, it robs you of your social skills, your livlihood, and changes your personality. I agree with you 100%, RSD is personal. Aside from the pain, I suffer from mood affective disorder, GAD, lost 17lbs in 3 mths, hypoglycemic periods and exema. The more I read the more I understand that RSD links so much of the emotional and pain centers of the brain that it becomes a two front assualt.
I would be very interested in chatting with you...and I hope you are doing well.
For now I will bow to the Amida Buddha in all of you, for that is what is good and spiritual in us all.
I wish you peace and God Bless. ....Tim

[denise29929]

Please check out my reply to "can't handle this anymore" dated 6-21-09. Might give you hope. Denise

[reruho]

ttuck
Can you tell me about your bout with excema? I had my forehead turned bright red and start peeling. It was from the hairline and 1to 1.5 inches down the forehead. It was right after a period of high stress. I freaked out..

Mine has cleared up with vitamin E oil and lots of moisturzers.

I have read some comments about RSD and excema but it is very fleeting comments.
Reta

[Shianne]

Reta,
I have always had dry skin but what you described I did not get until I had RSD. In fact it is so bad between my fingers that I cannot where my ring most of the time. My guess has been poor circulation but I would like to know why also.~Shianne

[ttuck]

Hey folks:
Reta and Shianne.....excema related to RSD seems to center on the afflected areas. Considering your Sympathetic Nervous System is what this condition stems from ...it is not above the consideration that your response to outer stimuli is going to spread as does the condition when it reaches third stage.
Doctors love to give you cortisone based creams/lotions for a short fix, but long term use of these creams can become ineffective over time and actually start causing effects of their own.
My excema started on the afflicted limb, but as my immune system response became overwhelmed by the pain stimulus, it spread to my chest, and areas that we perspire more than others.
I looked at the basics...started using phosphate free, unscented, dye free natural laundering detergents, using reusable anti-static balls in the dryer, unscented antiperspirant, this cut down on the external exposure to possible irritants. I turned to natural soaps...Oatmeal, in particular because of its natural soothing and moisturizing properties....Olive Oil, for shaving. Trust me....there is not a great deal of expense involved, less than the prescriptive. I found a natural daily vitamin and started taking doses of Wild Salmon Oil capsules (1000 mg). I am almost through with smoking (5 per day) and started drinking tea instead of coffee.
I still get outbreaks, but they lessoned in duration. I also use a buttocks paste for moisturization (zyncofax,nivea,vasoline,tincture of benzoine and whichhazel) on the affected sites. For your hands I would strongly recommend a beeswax based moisturizer, go to a natural dish washing, cleaning solutions, or wear rubber gloves. For the scalp...there are tar based shampoos which are helpful and you can rinse with lavender essential oil and water mixture to mitigate the strong odor. Apply the beeswax moisturizer to the afflected areas.
But I can't stress enough the inclusion of a good daily vitamin and the Wild Salmon Oil. Remember your immune system is compromised to a certain degree because of the reaction to the RSD. Just think of the burning reaction you get when your affected site is touched, this tells you how sensitive your system has become.
Hope this helps.....God Bless you both and have a peaceful and pain free day.....Tim

[ttuck]

Sorry Folks:
I guess I am getting a little overstated.
Reta...stress is a well known contributing factor to the accerbation of excema outbreaks, the more you experience the worse the outbreak. Most of what we experience with RSD is stress related because of the pain. The excema in its simplist terms is an inflammation (dermatitis), we all know about the inflammation associated with RSD.
Most of the inconvenient side effects we suffer from are because of over stimulation of our nervous response system which lies next to the emotional center in our brains. Overexcite one and the other is affected.
Again sorry for the added posting......Peace to all....Tim