[Gina_from_Mi]

Hi,

I am having such a hard time today. I have had this diagnosis for only a short time, and I am hopeful that I will get some pain relief. Right now, I am in extreme pain. I feel so alone, because my family does not understand what I am going through. I don't know what to do. I have been referred to a pain clinic, but I have to wait until they call me. Right now, I am having a hard time focusing on anything. I feel like the world is going on without me, and honestly I don't even really care. Feeling so lost and out of control.

[ali12]

Hi Gina,

I'm SO sorry to hear about everything you are going through right now and that you have been diagnosed with RSD! I really hope you find something that helps you real soon and am keeping you in my thoughts!

I was 12 years old when I got RSD after an ankle sprain and am now 14. It started in my left leg and has since spread to include both arms unfortunatley. I spent 13 months in a wheelchair after a nerve block caused me to lose all coordination in my legs. Like you, I have been really Depressed. It was so bad at one point that I thought that my life wasn't worth living and actually wished I was dead. I think some of that was from medications, pain and frustration. I was (and still am) frustrated at the world and I always keep wondering if i'll ever have a normal life, if i'll ever be able to do things normal teenagers do etc.

I'm not on any meds at the moment and my mood has improved quite a bit. It took a LONG time but after so long, you start to realise that you can't do anything so you may as well try and live your life the best you can, despite all of the limitations. I still spend many days crying because I can't do things that normal teens can, but I do seem to be able to 'cope' with it better now.

Do you see a Psychologist? They can be really helpful. My first Psychologist was useless and didn't understand anything about RSD but my current one has really helped me. It's so nice knowing that I can talk to her whenever I want.

I'm sorry your family don't understand RSD. I think that's something that we all have to deal with unfortunatley. I'm lucky that I have my mum there for me - i'm not sure what i'd do without her - she's helped me through a lot and never left my side when most other people did. My dad doesn't understand RSD at all and refuses to really. He'd much rather play the ostrich roll and pretend it isn't happening which is OK for him but what about me? I have to deal with this day in day out! He's only ever been to 2 hospital appts with me in the 2 and a half years that i've had RSD. My mums had many arguments with him over it and their relationship is basically over - he lives in the same house as us but it's only because my mum can't afford a Solicitor at the moment.

My grandad passed away last year. He never really understand RSD and we had an argument with him before he passed because of it. That is one thing I regret the most, i'd give anything just to see his face one last time. Even though he didn't understand RSD, he always made me laugh when I was feeling down and that helped a lot. I guess it's one of those things unfortunatley where you'll never realise what you've got til it's gone. I'm just glad we made up before he passed otherwise I don't know what i'd have done!

Everyone always say's that no one will truly understand RSD unless they have it and that is SO true! I know it's really hard but try your best not to let it get to you too much ... stress will only make you feel worse! Try and give your family and friends as much info on RSD as you can and let them ask any questions they may have and see what they do ... it's up to them to start understanding then!

I know it's hard but try and not give up hope! How far along are you into your RSD? There's many medications and treatments out there that could help you!

Sorry for such a long post. Just wanted to let you know that you aren't alone and that I understand. If you ever want to talk, I am here for you as I understand how hard it is dealing with such an horrible illness!!

Take care and hope to see you round more soon! There's many great people here!

Alison

[Imahotep]

Depression is one of my big problems too but for me it's the lack of control I think. Plus I feel guilty a lot.

This thing does change our lives but it doesn't have to remove us completely from life. It certainly makes us appreciate what we do have.

Hang in there. You'll probably get on the right medications for you in time. Since you've had it a short time your chance of a partial or nearly complete recovery are much higher. Learn your triggers and avoid them but don't give up.

Most of my family members have come to understand my limitations even if they don't understand it. I'm really in the same boat since I don't understand either.

[Gina_from_Mi]

Thank you both for responding. I am feeling much better about things today, and I'm sure that I will have good days and bad days. Yesterday was especially bad for me, because I had to back out of an event that I was so looking forward to attending. My sister was here from out of town, and I see her only once or twice a year. She was frustrated with me, and it only made everything worse. Wow, I had no idea that something like this could be so life changing. I am not ready to give up on the things that I love. I need to be here for my family and I will fight. Today is a new day and things will get better!

[AintSoBad]

Gina,
That's a great attitude!
WE ALL get down.
I've had rsd since '83.
And, even though I feel I have the best doctor, and care, I still have more down days than up, or should I say, everyday, I get some "down" time....

Special events, like your family visiting, tends to give us an adrenaline burst, and that can really hurt, once it passes!
I hope that your sister has the time to "listen" to you..
That's what you need to ask for from her.
Let her know you're more frustrated than she is! (I'm sure you are).

You will get through this.

Blessings and peace,

Pete
asb