[painfull]

I'm new here and have recently been diagnosed with RSD. I am very overwhelmed with the constant dr appointments. I have been able to remain at work, only because my employer is so understanding, not because this disease is giving me any mercy. I am here to find some friends or atleast someone who can relate to what I'm going through. I am very fortunate to have an entire team of dr's on my side. But there are no support groups in my area, it becaomes very lonesome when you feel you are the only one with this problem. A year ago I was training for a triathalon and now I can't walk with out a cane. I was hurt at the gym training with a trainer, but you know I signed a liability waiver to sign up at the gym....all the gyms do that. So I have no recourse with the gym. If i don't work, I don't see my dr. I can't go through the day with out my medication, the pain makes me cry all the time. With my medication I can walk a block, with out I can't walk at all. I'm still very angry at the world for this disease, but I'm trying to work through it. I wish I had never seen that trainer, or pushed myself that hard. I tell myself had I not been hurt at the gym maybe I would still be ok, or if I had health ins at the time and been able to see a dr right away maybe I could still walk. My drs say the injury went so long with out help that it has become RSD on top of the injury. I'm sick and tired of being sick and tired. I have no energy to do anything and I throw up atleast 3-4times a week. I ask my therapist how much can 1 person take, and he just says "more than you know". I suppose I am full of different emotions all the time: anger, sadness, confusion, even embarrassment....but not much happiness anymore. I HATE THIS DISEASE!!!

[bgus1969]

Originally Posted by painfull

I'm new here and have recently been diagnosed with RSD. I am very overwhelmed with the constant dr appointments. I have been able to remain at work, only because my employer is so understanding, not because this disease is giving me any mercy. I am here to find some friends or atleast someone who can relate to what I'm going through. I am very fortunate to have an entire team of dr's on my side. But there are no support groups in my area, it becaomes very lonesome when you feel you are the only one with this problem. A year ago I was training for a triathalon and now I can't walk with out a cane. I was hurt at the gym training with a trainer, but you know I signed a liability waiver to sign up at the gym....all the gyms do that. So I have no recourse with the gym. If i don't work, I don't see my dr. I can't go through the day with out my medication, the pain makes me cry all the time. With my medication I can walk a block, with out I can't walk at all. I'm still very angry at the world for this disease, but I'm trying to work through it. I wish I had never seen that trainer, or pushed myself that hard. I tell myself had I not been hurt at the gym maybe I would still be ok, or if I had health ins at the time and been able to see a dr right away maybe I could still walk. My drs say the injury went so long with out help that it has become RSD on top of the injury. I'm sick and tired of being sick and tired. I have no energy to do anything and I throw up atleast 3-4times a week. I ask my therapist how much can 1 person take, and he just says "more than you know". I suppose I am full of different emotions all the time: anger, sadness, confusion, even embarrassment....but not much happiness anymore. I HATE THIS DISEASE!!!

Hello there. My name is Brian. Although I don't have rsd, I do have hydrocephalus. Ihave pain like you describe but in my head everyday. i have been on vicodin for 2 years and am ready now for percocet because no other medicine helps other then narcotics. i'm like you in the fact it's really hard to accept this and that theres no cure. Nobody understands unless they go through it. Ever since my 2 brain surgeries I suffer from major depression. If you need a friend to talk to i'm here.

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

Check out the founding link where there is a great number of members to assist you:

http://neurotalk.psychcentral.com/forum21.html

There are great number of fellow members here to assist you. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

[MelodyL]

Hi.

My heart goes out to you. But you sound like a fighter so, please keep fighting. One day, you'll find a med that won't make you sick and that interrupts the pain signals to your brain.

Have you ever considered medical marijuana (if it is even legal where you live).

I know people who swear by this. It does not get them high. It makes life tolerable.

Look into it.

Take care,

Melody

[Jenna Delaney]

Originally Posted by MelodyL

Hi.

My heart goes out to you. But you sound like a fighter so, please keep fighting. One day, you'll find a med that won't make you sick and that interrupts the pain signals to your brain.

Have you ever considered medical marijuana (if it is even legal where you live).

I know people who swear by this. It does not get them high. It makes life tolerable.

Look into it.

Take care,

Melody

I agree with what you said about marijuana. Only in small amounts. It really helps!

[whisperstothesun]

Hi. Sending you love because RSD is terrible, and at first the life changes feel unconquerable. I've had RSD for over 18 yrs, after a brutal car accident mangled me. I can relate to the "what if" and "if only" thoughts you mention realing about in your mind, but they are not helpful. You need all your energy to overcome and manage this right now. I did the same thing at first, but eventually I realized it changed nothing, and distracted me from productively seeking coping and disease management tools.
May I suggest a couple of things? It sounds like you are in very good hands, and also like you are one strong fighter (a trialthalon, afterall!), but in case you've not tryed these yet--- cranial sacral therapy is wonderful for RSD. It is the only "bodywork" I can endure. It is featherlight holds applied to the cranial and sacral areas to regulate the spinal fluid pulse, thereby relieving and relaxing the sympathetic nervous system. Nothing stops the pain completely, or we wouldn'y be here, but this really helps, and is often covered by insurance if the treatments are administered by a physical therapist. I would try asking your DRs. for a PT referral for this and this ONLY. NO other PT works, and will only make someone with RSD worse. ALso, I was wondering if you are vomiting from nerves or meds? Depending, I can make recomendations for this problem also, because after 18 yrs. "been there, done that" too. Hang in there, and feel free to ask me anything. I'm also new to this forum, but a veteran of the fight. love and light to you!!