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Old 08-26-2011, 08:35 PM
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Abbie Abbie is offline
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Join Date: Oct 2006
Location: In a DARK corner.... not looking for a way out.
Posts: 5,526
15 yr Member
Abbie Abbie is offline
Elder
Abbie's Avatar
 
Join Date: Oct 2006
Location: In a DARK corner.... not looking for a way out.
Posts: 5,526
15 yr Member
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Hello Kitty...
First I want to say that you are NOT alone!!!
I am writing to you as a fellow RSD patient who also has mental health problems.

I have had RSD for approximately 8ish years... it starting in my foot and within a year it spread full body, head to toe, including internal organ involvement. It has also spread to my eyes causing severe burning, stabbing pain, watery eyes. Mouth and throat...can't eat or drink anything colder or hotter than room temperature---imagine a zillion of razor blades cutting and sliding as they go down.

It's a daily battle for me to stay alive. Suicide is a constant companion and has been for years. I have Bipolar, PTSD, Severe Depression, and other mental health diagnosis.


I hope you don't mind but just so you know you are not alone in your symptoms, I will address your symptoms below and let you know which ones of yours also match mine.

Please note on a side note.... No two RSD patients are the same, None of us have the exact same symptoms and no medicines treat us the same.


Quote:
Originally Posted by kittycapucine1974 View Post

First, I had RSD (Reflex Sympathetic Dystrophy) in my left knee. Then my RSD moved into my whole body. RSD causes severe chronic pain and other symptoms, such as:
-electrical discharges going up my spinal cord all the way to my brain (my head then bobs up and down), My medicines cause me to do this...not sure which medicine it is as I take many and I'm too afraid to go off of them to narrow it down to which one is the cause.
-feelings of icy cold (like liquid nitrogen) running through my veins and arteries, making me shake real bad and giving me cold hands, This is the feeling of all of my veins. 24/7. Cold air makes it worse.
-feelings of insects crawling through my veins and arteries (creepy crawlies) in the torso area, I have this feeling frequently in my arms and legs.
-migraine headaches, Everyday
-stomach and intestinal pain and cramps, I have the cold burning, stabbing sensation.
-blurry, dried eyes,
-poor appetite with frequent nausea, I eat maybe once a day.
-etc.

I have trouble accepting I have full body RSD with its pain and all other symptoms. I think everyone I have talked to who has RSD feels this way. I didn't want to accept this diagnosis either.

Results:

1) I do not have the desire to live anymore. I feel this way more often than not. But sweetie... you have a beautiful baby boy that has the desire for you to live.

2) I feel desperate and sad. I would say many people with RSD feel this way. RSD takes the wind out of our sails.... it's a MONSTER that steals from our very being.

3) I cannot even be a good mother for my adopted two-year-old baby boy. You can be the best mother... you are the only mom that baby knows. He's so young...he won't remember this bad time your going through....

4) I do not enjoy the activities I used to enjoy (sky diving, water skiing, horseback riding, rock climbing, reading, etc.) Is it because you can't do these things anymore? I do understand... I was super athletic... Basketball, softball, martial arts, all kinds of sports.

5) I feel unloved, lonely, and rejected. This sweetie I understand... YOU ARE NOT ALONE. That baby boy of yours loves you unconditionally.

My family hates me for multiple reasons (too long to list here). I have no friends in real life. My coworkers do not care about me. Family, well, that's a rough one....it's hard they play their own games with our emotions.... I found out I was the one that was causing problems because I didn't have a self-filter on my mouth and I would say what I wanted and that just caused problems and everyone stayed away. Friends, I've lost many because of RSD..but mostly because of my depression and wanting to die. They didn't know how to handle me. Many didn't want their children to ever believe there was a reason to not want to live. Coworkers, well, they are just that... they are just coworkers.. very few are friends...ever notice that when you leave a job...you never hear from them again... a friend would call... a coworker just goes on working.

I take medications for my RSD (Duragesic, MSIR, Tambocor, Inderal, Relpax, Keppra, Klonopin, Tylenol, etc.) Ive taken some of these, they did not work for me....no longer on any of these listed.

I saw so many psychiatrists I lost count. I do not get along with them for several reasons: I've been to a few... finally found a Psychiatrist that I trust and who believes in me...she took the time to look up RSD. Here is a suggestion if you should like... go to www.rsdsa.com and print out information about RSD and take it with you to your psychiatrist and other doctors so they can understand that RSD is not a mental health problem but it does cause mental health problems.

1) They do not believe I have RSD and severe chronic pain, even though it was diagnosed by:
-Emergency Room physicians,
-Primary care doctors,
-Physical medicine & rehabilitation physicians,
-Orthopedic surgeons,
-Pain management doctors,
-Neurologists, and
-Radiologists.

2) They treat me like a druggie, even though my narcotic painkillers are the foundation of my pain treatment, without which everything would come crashing down. This is diffamatory for them to call me a druggie.

3) They treat me like my pain and other symptoms are in my mind.

I tried anti-depressant, anti-anxiety, and anti-stress medications, but they do not work at all, even if they are taken long enough and at maximum dosage. I, personally, think that these meds need to work hand in hand with going to see a therapist and psychiatrist.

I am looking for some love, understanding, support, and prayers from those who are able to understand what I am going through.
I understand. Been there... still there. Hold on,,,(I know...I hate those two words too..) You will have better days. I'll be praying for you. Hug that baby boy for me!!!

Thanks for everything.
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niece Ashley!

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Rest in Peace
3/8/90 ~~ 4/2/12
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