RSD Outreach awareness

Richards Misery

Go down

Re: Richards Misery

Post  byrd45 on Thu Dec 29, 2011 1:40 pm

Hi Richard,
thank you for sharing your story here with us and I hope it helped to lighten your burden for a little while. You are dealing with so much and I am so familiar with those feelings you spoke about. RSD has a way of tearing you down and turning your life inside out until you hardly recognize it anymore. If you aren't currently going to one seek out a neurologist that specializes or is knowledgeable in RSD. Is the doctor you are seeing now a pain management specialist? That is who you need to handle your medications. If they are one I would seriously think of moving on to a new one. If a general doctor is handling this for you that could be a problem because they are very hesitant to prescribe pain medication and don't truly understand just how severe the pain gets with rsd. I would hate to see another person take their life just because they weren't being heard so please make suicide somewhere you can never go for yourself. I learned a long time ago thinking is one thing doing is another. I think mostly all people that have RSD have thought of it and some more times than we would like to admit but you can't let it take your life from you too. That is the depression part of RSD talking and at work and it can do a number on you if you don't fight it. Take it from someone who has been living with RSD for ten years and the depression close to eight years it can be overwhelming and life destroying if you let it. RSD has pulled my life to pieces too and I feel your pain and know what it is like to have doctors not understand you and not help you like they should. I fought with workers comp to get medicine and treatments I desperately needed for nine long years until I finally settled my case for very little money that has already been eaten up by hospital bills. I was an artist and photographer in my life before RSD and I worked with special needs kids. I wanted to show my work in a gallery some day. I was so talented now I shake and my right arm is messed up and doesn't do what I want it to and it is hard to think straight anymore. Do you and your wife have kids? My husband and I do and for them and him and because I made a promise to myself I will never commit suicide no matter how bad the pain gets and it gets severe to the point I vomit from it. What we do everyday fighting our pain making it through the night which for me can be the worst time makes us survivors and each day we are a little stronger whether we realize it or not. You had to be tough to do all that weight training and competition. What you learned there is going to serve you here. That digging a little deeper when you feel like you have nothing left that feeling you get of hitting the wall but pushing past it anyhow.You have these skills and need them to fight through the pain, plus the way you breath means alot when your pain is high. If I can manage to keep my breathing under control it helps. did you notice when the pain vamps up your breathing gets real fast which is like hyper ventilating and doesn't help. I have learned if you can slow it down long slow breaths it helps. I was really into biking before I got hurt and I miss that exercise to this day but I still use the breathing from back then and those ideals. I am very sorry I didnt reply sooner but hope you see this just the same.
take care,

Posts : 1014
Points : 343
Reputation : 0
Join date : 2008-10-29
Age : 54
Location : PA

Back to top Go down

Richards Misery

Post  rbohica on Thu Apr 21, 2011 2:02 pm

First I would like to apologize for the terrible grammer but it is so difficult to focus with the continuous pain.
RSD is taking my will my hope and taking over my life as well. Just two years ago I was an extremely active 44 year old Regulatory/Quality Assurance Manager that participated in amateur body building and power lifting competitions. To say that I looked like a picture of health was an understatement. I stood 6'2 and weighed 270 pounds with 8-10% body fat during non competition periods. Please understand that I am not attempting to boast or anything of the sort but I worked hard in my career and worked hard in my bodybuilding and power lifting hobby and lived a very clean and healthy lifestyle with my loving wife of 17 years.
Then two years ago due to the many years of extreme weight training and a prior history of sports to include football up to the semi-pro level for 7 years my left knee had finally completely worn out. I began suffering an extreme case of arthritis as the joint was bone on bone and causing extreme pain with the loss of the ability to walk let alone any type of exercising. Through consultation with my orthopedic physician who happens to be a prominent physician in the Orange County California area, it was recognized that I had one of two choices either a complete knee replacement or perform a (High Tibial Osteotomy) on my knee. We decided on the High Tibial Osteotomy as this was expected to provide me with another 5 to 8 years of competitive type weight training once the healing process was completed to which the knee replacement meant the end of my hard working lifestyle as I knew it.
Then it happened! I had the surgery and somehow obtained a staph infection within my knee which would not heal and forced me to undergo a second surgery to clean the infection out. Once this surgery was completed I still was not healing properly showing signs and symptoms of a non closing wound, extreme pain, redness, swelling, burning etc. This went on for a couple of months and through this and many examinations by a number of specialists to include vascular surgeons, pain specialists, orthopedic specialists etc. I was diagnosed with RSD (Reflex Sympathetic Dystrophy) or to some as it is also referred to as CRSP (Complex Regional Pain Syndrome).
I have received and or tried every type of treatment possible such as the Spinal block injections, Physical Therapy, Psychological Therapy, Electronic Stimulations, Oral Medications, Spinal Stimulators, etc. and all without any success. The only thing that seems to offer at least a temporary minor level of relief is the regimen of oral medications that I am on and it is amazing how the doctors are so hesitant to prescribe the medications. Seriously cant anyone understand that as an intelligent adult male I am fully aware of the risks of these medications but that they far outweigh the alternative!!!!!
This disease first started from my knee down to my toes on my left leg and then spread up to my hip so as to include my entire left leg, and is now beginning to show itself and appear on my right leg from my knee down. This disease is horrible as it has completely crippled me in my left leg. The pain is so horrible that I am not even capable of wearing pants as I cannot handle pants rubbing on my leg. I am unable to sleep in my bed with my wife as I cannot allow sheets; blankets etc touch my leg due to the extremely painful sensitivity.
Due to the extreme pain and inability to wear proper clothing I have lost my very lucrative, challenging and exciting career and now become permanently disabled. As a matter of fact this once proud powerful man now must depend on my wife to help me get dressed and undressed so that I may simply use the bathroom!!!!
I was once friendly, outgoing, confident and excited to be alive and now live as a shut in as a hermit due to the difficulty in relating to others because of my constant and continuous pain level as well as the extreme embarrassment from the grotesque deformity that has taken over my leg from the disease.
I have always considered myself an extremely strong man whether physically, mentally and spiritually however I now live each day battling within myself on whether to wake up one more day or not. This is a non discriminate and horrible disease that does not seam to care whether you are male or female, small or large, in shape or a sedentary but is hell bent on causing as much agonizing, life destroying, relentless, mentally challenge pain as possible.
And maybe the very worst part of this entire thing is the failure of understanding by others for anyone going through this hell on earth. It is amazing how little even the so called experts in this field truly understand or at least care what I am going through. The insurance companies are another issue in the constant daily battle to prove reasons as to why I need my medications.
As the poster previously I too apologize for this book but there are so few that truly understand this as I do, I guess I would like to say thank you for allowing me to vent and I wish all of my brothers and sisters suffering out there from this truly devastating disease the very best and I wish you the strength that I sometimes feel that I am losing which is to keep fighting for another day.

21 April 2011
I have just returned from the doctor to discover that I know have torn the meniscus and my ACL in my right knee due to the overuse caused because of the RSD in my left knee. The doctors cannot operate now and so I suffer even more pain.
I also cannot understand the lack of support or care I receive from doctors, pharmacists, friends even family.
It seems I am so alone as no one understands the amount of pain I suffer every minute of every day of every week of every month of every year. I have a grotesquely deformed and disfigured leg from the RSD along with xrays, MRI's etc showing and proving my injuries and illnesses yet all anyone thinks is that I just want medication to get high. The (EXPERTS) claim they are just trying to keep me safe from the horrible medication and that these medications can be harmful etc.
Please God will someone help me make everyone understand that I am suffering and I am so sick of hearing how they are attempting to watch out for me, look I am now a 46 year old educated, intelligent completely lucid man that knows what is best for me and my own health!!!!! The pain and suffering I go through now is in no way better for me and my health and if I ask for some medication just give it to me so that I can attempt to experience a short period of my day with a reduced level of agony and I will know when to medicate myself and when not to medicate myself.
Living this way is not what you call quality of life!!!!!! I am on a daily basis understanding more and more why so many with RSD choose to take their own lives.
If someone would just listen and care about the patients and stop attempting to act as if they know what is best for us. just stop interfering; how about just listen and help!!!! So alone and suffering.


Posts : 1
Points : 3
Reputation : 0
Join date : 2011-04-21

Back to top Go down

Back to top

- Similar topics

Permissions in this forum:
You cannot reply to topics in this forum