New to here and RSD
 

Hi everyone. I just was diagnosed today with RSD and have looked everywhere for something...anything to give me some sort of idea of what I am gearing myself up for. A little background is called for I guess. I had my last knee surgery almost 6 years ago, and I had to have my C5-C6 fused together 2 years ago. My knee has constently be giving me problems ever since the surgery, but my neck has been feeling fine (still does). I went to my doctor July 6 for my knee b/c all of a sudden it started killing me July 5. To make a long story short my MRI relieved that my knee is perfectly fine (thank god!) but that my bone marrow is speckled w/ fatty marrow replacement. That coupled with the pain, cold leg, sensitive to touch, and sometimes strange skin-color of my leg, I was diagonsied today with RSD. I am waiting for my referral to a pain specialist. Now, my pain I would not exactly classify as "burning" I can't describe it. The type of pain that I dread the most is when it feels like i'm being a pin-cushion from the inside out, that pain I can't stand. I have read that emotions and stress make this worse. Well, that does not mean good for me. I have an anxiety disorder, ADD, a 3-year-old, i'm in college and to top it all off my husband is over in Iraq right now and won't be home for another 9 months. I'm just really confused, worried, scared, annoyed and frustrated. Can anyone offer some words of wisdom, advice, comfort? Possibly tell me what i'm in store for?
Thanks so much for atleast giving me the chance to get all of this off my chest! :o

Hi Penguin,
Welcome to Neurotalk! This is truly a place where you can share your feelings, fears, whatever if frustrating you or sharing anything that is helping you.
I had surgery and it was 4 years for me, when I was diagnosed with RSD (from the surgery) RSD is an autonomic condition, which means it affects the involuntary organs in your body and the Limbic System in your Brain. That explains why you can get an anxiety disorder or panic attacks. I did after the surgery and didn't know why. Our short term memory is affected as well as while talking, sometimes we can't grasp the word we are searching for or forget what we are talking about.l I was diagnosed with a neuclear med test with dye. It shows the damagae done to the bone. This was my hand. It was positive for RSD. I had delay in treatment to it is partially paralyzed. But with therapy and desensitization, I can cut my own food, dress my self etc. Early treatment is so important. I had a lot of physical therapy and had frozen shoulder in both shoulders, one at a time. I went into remission twice.
You will find som much comfort on this forum. Friends will encouragae you, give you a lot of valuable information. I'd encourage you to read read read. We all have various systems, not always the same.
I'm sorry your husband is gone. It must be difficult with a 3 year old and not feeling well, Having a pain Dr. is imperative. Meds work differently for different people. One important thing is to sleep well. You need your sleep to function.I take seroquel 300 mg. My Dr. just finished a 200 person trial for the pharmaceutical company. I take vicodin for pain. An anti-anxiety med is of great help as this is a disorder of the sympathetic nervous system. I take lorazepam and that keeps the SNS calmed down. I take two high blood pressure meds. RSD is also tied in with depression. I take Cymbalta 120 mg.. For years i took neurotin, then lyrica for the burning pain. They both cause weight gain. I gradually went off and my electric jolts, jerks, spasms didn't come back. I've only had a couple since January. Went off real slow. Was on 3200 mg. Neurotin.
The national organization for RSD is RSDSA It has a lot of good information. They had their annual meeting this year in Arizona. Under Support there is a place to put in your zip code and will give you name and phone number of closest support group in your area. Support groups are very encouraging and you may be able to get some local names of good Drs. therapists, massage therapists etc. In Florida, there was a Dr. very involved in RSD until he retired. He has his website up rsdrx Under puzzles, there are 140 questions by patients and his answers. Very informative.
Take care, we are all here for you, loretta

Hi Penguin
 

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Loretta is correct in all that she posted. I hope you find peace and hope on this forum, as I have since 2008. Should you have any questions, please feel free to contact me. I am Dew, nice to meet you.:)

You certainly do have your plate full. I will keep your hubby, child, and you in my thoughts and meditation prayers.:grouphug:

We are a very supportive group of folks on NT. I look forward in getting to know you.:hug:

Hello and Welcome to NT!!! There are a lof of supportive and caring people on the forum.
I have two nephews in Iraq they are both in the Army. It's a good thing you have your 3 year old to keep you busy. They grow up so fast.
Visit the rsds.org website there is a lot of good information on the site. I remember when I first started looking for information on the web. I found some sites that really upset me. I have been living with RSD for 9 years. I go the Y for water walking and exercise. The water is great we are weightless so the pain doesn't bother me when I get in the water. I also see a pain management phsycologist and a chiropractor. He is a God send I'm sure his adjustments keep me for taking a lot of medication.
After 4 years of struggleing with this condition I finally got down on my knees and gave it to God. He gives me the strength and courage to get through the day.
Take care,
Sherrie

Hi I am sorry about your pain and dx. Has the person who dx you set you up with a pain doctor who deals with rsd? I think treatment through meds,other forms etc is very key. Also as someone who had anxiety before this it was something that really came back during. I waited too long to see a psych to help me mentally so I encourage others to go asap. It does not take away the physical but helps with coping of it and in turn when one is more relaxed I think that helps with pain. I know how scary and confusing this but it can get better with the right treatment. Are you currently on any meds to assist? What state do you live in?I ask cause I think many times a referal from someone who has the same condition and has a good doctor is helpful. I have seen so many in many states so I know that hunt for a good one. If you want an email buddy I am here. Support can really help

Hi Penguin,
Welcome to the boards!
The first few weeks and months can be difficult when newly diagnosed as the confusion, fear, and uncertainty mount.
In time, once you have a team of doctors whom you trust and feel comfortable with, the initial anxiety will decrease!!!

It is good to have a pain psychologist to work with and also to learn to develop relaxation techniques so that you feel as you you have some control over yourself rather than to let the RSD rule!

I hope you have some help as you sound like a very busy person with a little one to take care of and college classes, too!

Just remember to pace yourself so that you try and stay relaxed an unstressed..(easier said than done, I know!!)

For me, it is comforting to know there are people here on the boards that will understand me....I think about friends on the board each day and that gives me strength!! I have RSD in my left foot and leg, which is now 'visiting" my right leg and face!

Take good care, Penguin!
Hope4thebest :hug:

:circlelove:Penguin: Welcome to this warm and caring group! I am so glad that you found us. There are so many different words about RSD that I think the best thing that you should do at this point is just type into your computer: What is RSD? That is what I did over 8 years ago. There are so many stages of RSD! So maybe by typing it in you will know where you are. I know how it feels to be alone when you have this dx. I am facing this also all by myself and it is not fun to be alone. However I do not feel alone anymore having this great group here for me every day and night! Please ask any ? that you what to that is what we are here for! " I'm moving only clouds today... Tomorrow I'll try Mountains" Always Breezy55 :hug:

Thanks
 

Thank you all for responding, it makes me feel loved, understood and not so alone. :D
loretta--> Thanks for your info. It's kinda funny (not in a ha ha sort of way) but i've always had problems with my memory, some say (and I can't argue) that it's b/c of my "extracuricular" activities in high school.
Dew58--> Thankyou for your prayers, I know that we can all use and need them right now.
SBOWLING--> The water thing sounds fun. I know I enjoyed it when I did it after my second knee surgery when I was trying to learn how to rebend it, b/c it had started healing straight. :eek: Now that was fun! (not really)
daniella--> Thanks, but there is no need for you to be sorry :) I will be ok. I am just going to have to learn to adjust and adapt (at least this is my attitude thus far). I am on Tramadol, but almost out, so I reserve them for at night when I am at my worst. I live in Texas, but it's El Paso TX so New Mexico is closer than most Texas big cities.
hope4thebest--> Thanks for the advice, yeah, I am trying to go slow. I have been taking more breaks now and use my slowcooker a lot more for dinner now. OMG! "visiting" your face, that sounds almost unbelievable, I hope that is all goes well (well, as well as it can). I'll keep you, and everyone else, in my prayers :hug:
Breezy55--> Thankyou for those words...I really like the whole "moving clouds" thing.

hey penguin, i wrote a paper back in december for school about rsd and just about every aspect of it. here's the link to it if you'd like to read it.


http://neurotalk.psychcentral.com/sh...Research+paper

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