Hey guys, I've been having an extremely rough spell lately and I was wondering if someone would help me?

See my CRPS has spread from my right leg up to my right arm, so it's been hard. My doctor didn't believe me, although I know it's there because of the pain and ice coldness. Also, my back has been real painful too. And I tend to cry a lot because of it because I don't know how to express the pain I'm in. It's really hard being 15 and having trouble with friends, family, school, and this pain at the same time.
So I've been turning to my boyfriend to talk to. But lately, he's seemed distant. Like he didn't wanna talk about it. He said he doesn't like to hear me complain about it all. Which he still listens but when I talk about it, in the back of my mind I know that he's not wanting to hear it. I know he cares but, still.. know what I mean? He means a whole heck of a lot to me and I really would like not to lose him. We've been together four months now and he's the first guy to ever care for me and take care of me, he even helps get my medicine and put my boot on and off my leg. He carries my backpack around for me and he holds my hand and hugs me and tells me it's all gonna be okay. He's given me a chance when noone else has, Logan's given me hope that there are people out there that love me for me, despite my being different. What's a good way to strike up a conversation about everything, is there a way to tell him that I don't like to complain, but I do need someone there for me since my mom thinks I'm just overreacting a lot of the time? (that's a different story) And is there anyway that I can try to keep my attitude more positive so that I can make everyone around me happier?

It's wonderful he's been supportive, but you are likely relying on him too much to vent. You need to have a therapist that specializes in chronic pain. Also finding a support group would be great as well. Have you tried an inpatient RSD/CRPS hospital program for kids/teenagers? It would be Good for you to meet friends that can relate to your situation! It's unfair this has happened to you, but it's also unfair for a teenage boy to be your main emotional support, and to an extent your caregiver.

It is nice, and I don't ask him to do anything for me. He offers on his own or does it without even a warning. But I agree with you. I guess I do vent to him too much, even for an 18 year old, especially for an 18 year old with graduation and a job to juggle around. &yes, actually I'm going to Boston Children's Hospital April 2nd to be evaluated to see if I can be accepted. It's ten hours away from home, but I think it'll help. Crossing my fingers that I'll get in. Thank you sooo much for answering me! I appreciate it a whole bunch!

Please understand that it's not uncommon for family and friends to abandon some of us. Let him know how rare he his and how much you appreciate him. Also, an 18 male is often the eqivelant of a 15 or 16 year old girl. The fact that he's so thoughtful is amazing. When you're having a good day make sure you do something for him to let him know how much you appreciate him.

P.S. And good luck with BCH's program!!!

Hi SM,

He could be stressing out and/or trying to distance himself if he is concerned about your upcoming evaluation at BCH. How long are you sceduled to be in Boston for ?

Something that has helped me a LOT, is seeing a psychologist! One who specializes in PAIN management! While family and friends can be a great support system, they often fail to understand how hard the particular condition is to deal with. The constant nature of this type of pain can strain not only with the pain, but emotional exhaustion, and a little depression as well. You really should look into a psychologist, I see one and she does "bio0feed back" and "hypnosis". It is calming and helps to clear out the stress that builds up so quickly with this "disease".

I think it would be beneficial for your mother to go with you as well. I feel she should talk to an adult who has this condition, or with a doctor well experienced with RSD/CRPS as she should be the one to help support you the most. Have her check out the Mcgill Scale of pain chart.


http://www.ozrsd.org/forum/images/mcGill_Pain_Scale.jpg

She might be surprised at how high it's rated by DOCTORS! Keeping a positive mind set is key as well. Don't let your MIND pull you down and convince your body to feed into this condition. It will make it worse. You can't really "will" this away but the mind IS powerful and SOMETIMES it can help lessen your pain!

Here's another site for your mother, boyfriend,friends to maybe take a look at.

http://www.rsdhope.org/

I really really think you should talk to your mom and see if there are any Pain Psychologists in your area. It has helped me tremendously to reduce stress and feel more capable at handling the daily life dealing with this condition. Don;t get me wrong it's not a cure-all and I too still struggle a LOT with pain. My medications were recently changed for the better and now my daily pain is a heck of easier to deal with. Sometimes that can be half the battle! Also since you are young still growing and have school, narcotics for pain would probably not be the best choice for you. Talk to your doctor about Lidocaine patches!! That might be a great way to help alleviate some of your more intense pain and carry on every day things a little easier.

Please don't hesitate to ask questions and speak up to your doctors about pain. I'm sure it's harder for you as they have to be careful what to give a still growing patient. Anytime you need an ear or have a question or problem don't hesitate to private message me! Sometimes just venting to someone else who understands how this condition can effect you can help immensely!

Hi my name is mike and i am 28 years old. I was currently diagnosed with Rsd of having it for the better part of 4 years. Everyone i talked to didn't believe me when i was telling them of how badly my pain was i mean in fact the funny part one orthopedic doc i had laughed at me and said to me i didn't know what i was talking about and that i was lying to his face! He said there is no way possible that i could have all these pains in random places at my age, that i was just milking the process because i was reluctant to work. Well that was 4 years ago like i said from the start so after that i was transferred to another orthopedic doc and he said that i had a little tear in my right shoulder of my labium i think that is how you spell it, well anyways i had surgery before on my right shoulder before and had 2 anchors placed in there to hold my rotator cuff in place. So at this point the doc thought that this was just a recurring injury so he tried to send me back to work while sending me to a RA Pains specialist. While seeing the specialist they sent me to physical therapy and aqua therapy and all the mean while my pain was intensifying and getting so much worse with my mobility. So they cut me off and said that i am just at my maximum treatment that they couldn't do anything further. So now i am still fighting the oh so reluctant Workman Comp trying to get my benefits back and stop them from fighting me to get these treatments down that i need. I am currently inline for keteamine infusion and blockage or the spinal infusion thing with the blockage with a pump implanted in my abdomen. I am in so much pain but i have gotten so used to the pain over the 4 years of having this but i just get so depressed because of everything that i used to do i am not able to, my rsd has gotten worse to the point to were i have a hard time taking a shower because of my pain. It has gone from just one hand and arm swelling and color changes to both arms, hands, and both legs now. There times that i just feel so helpless and all my friends just say i am just being mellow dramatic plz if u have anything opinions anything please tell me what i can do about this. I mean just 2 days ago i just broke one of my fingers because i fell cause of my pain i tried to grab for something and got my hand slammed into a door and then i fell on my hand funny and my finger broke. so anything would be helpful because i don't want to stop moving around. Thank you for listening to me.

hi Mike
I have copied your post to a thread of its own so that it doesn't get lost here on the other member's thread.

Here is the link to your thread http://neurotalk.psychcentral.com/sh...d.php?t=185667