Newbie
 

Good evening everyone,

My name is Gina and I'm 27 years old. For the last 2 years I've been suffering from pain, swelling, sweating, and color changes of my skin. Doctors had no idea what was going on with me until just recently.

I thought I would be relieved to finally have a name to put with my illness but that couldnt be further from the truth. I have no family support, am often alone because I have a hard time leaving the house, and I'm just waking up each day watching my once bright life, pass me by.

My current boyfriend has been a blessing but his military career/deployments, keep us more apart than together.

I have lost all motivation and hope. I have never felt more alone that I do now. With a little research I have come across this support group. Im really hoping that by reaching out I can find some kind of comfort and a positive support system

I would like to say welcome :welcome_sign: !
I have only been diagnosed a few months now, butdealt with the pain far longer. I found this group shortly after diagnosis. These people have been amazing, and helpful, any questions you have, we will all do our best to help. I am sorry to hear you have been diagnosed with rsd too :( I hope that you have found a good doctor, or at least a decent one.

I wish i could say more, but know how it is. I am a hermit, because i can no longer drive. I have to FORCE myself to leave the house when i do have the chance. I am sorry your home based support is not there, but i think you will find a good group of support here. You can message me if you want to talk.

I am 22, have rsd in my right arm ( and some spreading to other limbs now).

Please don't be afraid to ask anything, these people are here to help in any way they can.

I hope that your days get better.

We all lose hope and motivation and some stage, and like you I am virtually housebound so it's probably worse for us. after fighting to get help finding the un/misdaignosed here for 18months and only my own MP joining in, in May I got a letter from my future King stating he was to busy to help.
I've never felt so low, if The Prince of Wales doesn't care about 250,000 of his people why should a stupid old man. To my shame I gave up for a couple of months I was so low I could have walked under a snakes belly.
One day my wife told me that since it spread to both legs my granddaughter has been breaking down crying in school and having nightmares, they hadn't wanted to tell me because they thought I had enough to deal with.
Right there and then I was disgusted with myself and vowed to fight to my very last breath and if I was going to fight the UK goverment I might as well fight the whole world becuase there must be 10,s if not 100,s of millions of un/misdaignosed out there.
For the last 6 weeks I have been working on a project which should be ready to go by end of next week. Two of the top uS Sites have agreed to help get it out and I have asked the webmaster here to join in but that won't be enough I will be asking everyone on the forum to get involved.
Hopefully when you see it, it will motivate you to join in and give you hope for the future

Gina,

Welcome to the forum; sorry we had to meet this way.

But as the others said, it is a good place to come to for support and information on CRPS. Which is possibly one of the most misunderstood conditions in the human body.

As for treatment, what you're getting and from WHO is very important. It took me a half dozen doctors before I settled on my primary CRPS physician (a podiatrist as I have it in the foot) who actually knew a fair amount about CRPS. Many doctors gave me the "doe in the headlight" look when I told them I had CRPS. So you thank them for their time and you move on to the next one. You need to specifically ask any professional you are seeing "how much experience have you had with CRPS?"

Others on my TEAM include a physical therapist, pain management doctor, chiropractor, general practitioner and sometimes a massage therapist.

Don't forget about your mental health too. Depression is extremely common for those of us with CRPS. I am being treated for it. A therapist (and anti-depressants) can often be a huge asset to developing a reasonable quality of life, which we are all entitled to.

It takes TIME to figure out what works for you. Although there certainly are symptoms that many of us have in common, it can be a very unique condition. What works for one may or may not work for another.

Good luck to you!

Thank you for your response. I can completely relate with forcing yourself to leave the house. MY CRPS started in my left arm and since then, has also moved to other limbs.
Im really hoping to get connected with you all here for support.
I am also here anytime you need someone. :hug:

I commend you for fighting your government for help. Where can I read more about your project?

finding doctors that understand CRPS has been a nightmare. I can't even begin to tell you how many i have been too. I am still actively looking to this day. I'm looking forward to learning more about my CRPS thru this site and also getting to know fellow CRPS suffers.

I've had CRPS for over 8 years and I still have spurts where I'm upset, then I'm ok with it, then upset again. I found myself asking "what's the point in being depressed about this?" Those feelings are not helpful whatsoever. I've met many people with CRPS and those that are doing the best seem to have the best attitudes. That's just my observation though.

Finding a PM doc that truely listens to you and one that has a genuine interest in your wellbeing may help with your acceptance of this disease. Most people are not going to understand CRPS. I mean, did you hear about this prior to your diagnosis? Not many people have. We have to remember that even though we feel we're "experts" on this, far more people are ignorant to its existence.

Just putting the final touchs, Will be up and running Friday or Saturday

it's up Worldwide Awareness Campaign post