I wish I knew where to start
Posted , 5 users are following.
My story is unbelievable. My suffering is 24hrs a day. More than just RSD. I CANNOT TAKE THIS ANYMORE. I have no life at all. I'll be a 51yr old male in June. My family suffers as well seeing all of this happening to me. This is my 1st time ever joining a group of sufferers from RSD. Mine is very complicated as well but I have other chronic issues. I've convinced myself that talking to others won't help because of all of my diagnoses. I feel now that I have no purposes anymore. So debilitated. I'm sorry to sound so pathetic because I cannot stand one to pity me. I just wish that I had my life back. I am completely changed now, no more wit and happiness. I know that there's no answers, believe me, I've given my all. Well, back to the couch where I've been for two years only being able to lay on my right side. Now my right side is being affected. I want to cry or throw up right now just typing this. I'M COMPLETELY LOST AND HOPELESS ABOUT MY CONDITIONS. Please, no disrespect to all who are suffering. Believe me, I understand.
1 like, 24 replies
Struggling50 ROCKY_BALBOA
Posted
I will pray for you to be accepted!
Tracy
allaroundanne ROCKY_BALBOA
Posted
Well, we could be twins LOL. I am only 58 and I took to the bed in Aug of 2016. We were actually out on our annual RV trip which is usually 6 months and my back pain got so bad I couldn't walk or sit. We had to emergently stop the trip and come home. It takes so long with all the evaluations ( including the stupid psych one, yes I am depressed I hurt so badly!) and the trials that I didn't get my permanent SCS until Dec of that year. I then had to get one for my neck, that I hoped would help with my arm neuropathy but didn't and in the meantime I got a common problem with chronic pain patients, a pelvic floor dystonia with severe burning lower abdominal and bladder pain. That was only cured by doing three months of intensive pelvic floor physical therapy which hurt like all get out but did completely stop the problem. Finally, after all that, I had to get a torn tendon in my ankle repair which has now landed me in CRPS world. To my boyfriend it looks like I am hypochondriac central. He thinks I like taking pills and going to doctors and so I keep coming up with illnesses. There is no way to counter this when things keep going wrong. And the worst part is this is what he tells my kids and so they think the same way he does. Everyone in my life can look at my multipage MRI scans and doctor reports and still look me in the eye and say, Oh Mom, there isn't anything here wrong. What??? It is so infuriating and exasperating I have given up talking to anyone I know about anything that is wrong with me. I just show up to things with a cast on my leg and they are all surprised and ask why I didn't tell them I was having surgery LOL.....So, I understand LOST and HOPELESS quite well, it also goes along with being utterly ALONE in this. People around you will get very tired of you being chronically sick, of you showing up with your cane, or in your case, your compression stockings, and start making comments about you behind your back. Then my boyfriend will helpfully try to tell me what my kids all said about me behind my back when they saw me after some operation or with my cast or whatever. I tell him to shut up. It gets ugly. I wish I had my life back or just some semblance of it. Or even that the people in my life realize that I wish for that. But it is what it is and you do the best with what you have been dealt. The thing I keep telling my kids that they don't believe at their own peril is that all of my arthritic problems are related to my hemochromatosis. Hemochromatosis is a recessive disease so all four of them have a copy of that gene and there are numerous papers coming out now that it only takes one copy of the gene to get some of the related issues, like the arthritis. They may all be in my shoes in 25 years. One already has disc issues in her neck at age 25.
ROCKY_BALBOA allaroundanne
Posted
Unfortunately the fall that I had paralyzed me for 6hrs in April 2016. That was well documented. I have a deep history of cervical spine disorders as well including a fusion down at 3 levels C4,5, and 6. It took 4 neurosurgeonso throughout a most the last 2 yrs to find nothing surgical to be able to repair but my persistent research lead me to find Craniovertebral Instability in I presented that to the 5th Chief Neurosurgeon at MUSC Hospital. I told him like the other surgeons that I wish there was a MRI machine that would let me sit or stand bending my head because the vibratory sensation gets much worse, the pain in my head, and lose of sensation in my limbs, I can't sit, I can only lay on my right side, and the spreading of CRPS is getting worse. He told me that there was a special MRI in Charlotte NC that would allow me to sit and bend my head back take images then forth take images as well. The other neurosurgeons prior to him knew nothing about this. He told me Craniovertebral Instability is very rare but that I was on to something. Come to find out because of my determination I was right. Now I had to have major surgery on the back of my head and neck. A device was put in to stabilize my head and neck and now I can't move my head " Permanently!" The surgery also made the CRPS, Trigeminal and Occipital Neuralgia much worse and it's now a 24hr everyday struggle. The discoloration and swelling in my left arm and hand makes CRPS very obvious. Sadly my diagnoses and major surgery makes it obvious to others now. In your case, I assume, that a cast, surgery, and such is not enough to receive recognition from particular family members is enough. I have a sister that would rather avoid talking about health problems and only make a conversation short. I only have one 20yr old daughter who graduates from college next Saturday that live 3 states away. I don't believe I will be able to attend and that is very upsetting for the both of us. She said she will understand but still I'm sure it hurts her. It's very upsetting to me being a proud father. As bad as this is for all of us who suffer from CRPS and other major health problems, at least now I know that I'm not the only one. I've opened my mind and time to listen to others on this site and that has helped me understand what CRPS really is to the mind and heart to others as well as myself. It won't change what I'm feeling physically but reading about others and their own research is giving me a little hope. We may not see any benefits in our lifetime but sharing our stories from all perspectives with our physicians may help others in the future. Who knows we may benefit part of this ourselves, we hope. If you can, take some of that focus off of your family members and apply that energy to yourself. Who cares if anyone thinks your being selfish. After all, it your own life that your trying to deal with. Worrying about if something was to get passed down to your children, which I understand, causes more anxiety especially when it hasn't happened yet. Use fear as a weapon to fight and make you stronger. It can be done if done properly. It's mentally and physically exhausting to try to make someone to believe what all is happening to you as well as the rest of us. Another fact is, once others meaning family members have major physical troubles of their own something happens. A switch gets turned on. In hope sake we wish those things won't happen but after all every single one of us are only human and these bodies of ours are going to suffer from something. Some minor, some major. We all will not have perfect bodies without suffering until we are in the presence of our Lord in Heaven. That is a guaranteed promise though "faith" of better things to come. I wish and pray for the best for you and your family.
Keep Punching!
Jimmy (Rocky)