Hi IHH,
 

I am glad you don't have the TOS. That to me is just as bad as the RSD.
As far as posture, we probably do have some bad posture from doubling over with pain.

Mark, What I noticed is when I was at my worst that's when my past came out. I had things that happened to me when I was younger that just came flooding out when I first got injured. I couldn't understand that part, what that had to do with the pain, I actually think it all made my pain worse.

I spent over 5 years dealing with my past in therapy. It took me that long to get past the nightmares and fear. I am past it now and it hardly ever comes back to haunt me so the councelling had worked for me.

Unfortunetly, now I am dealing with the loss of Bill and more medical problems. If I weren't in councelling I wouldn't get trough it on my own. I realize that. I think you have to realize it to be able to say ok I need help.

Thankfully that is what Vanessa is doing. Now that she knows she needs the help, she will see a difference in months to come with it.

Mark, I think we all go through the I feel sorry for myself every once in awhile with this.

Allen, I wake up every couple of hours anyway, I don't need an alarm to tell me I need to relax and loosen up. LOL

This is a good thread, it lets everyone here know that we are not alone in the need of help with this nightmare.

Something else I wanted to ask that goes with this is if any of you have panic attacks. I have had them for years and they had calmed down but I started having them again around March.
That's when my breathing problems get worse.

Ada

OMG! Panic Attacks!
 

I started getting those last year, but thought I was having heart attacks. Went for a ride in the ambulance one day cause I couldnt even talk it was sooo bad.

They gave me ativan for them, and it worked great! Since January I havent had any medical insurance so I dont have all the wonderful meds anymore :(
I have noticed that the panic attacks are getting worse for me, even coming on when im trying to go to sleep. They worry me quite a bit still cause I cant tell if it is the panic attack, or if it is heart attack. Then that makes it worse, and I realize it must be a panic attack.

Maybe someday the SSI will come through, and I can get a doctor, and meds back into my life.

Yeah I need the alarm all day just to remind me to concentrate on loosening up LOL. The tense thing makes the pain worse too.

:grouphug:

Hi Allen,
 

Mine have gotten worse also In March the panic attacks started, it might be because of my decision to move out of my home with Bill In April after I moved in here I ended up going to the ER before I had the VNS put in. I knew though that I wasn't having a Panic attack that night. I ended up having a heart attack and it might have been from the stress from the panic attacks and what I was going through.

I have sense had quite a few panic attacks. I had one tonight. I had a Drs. appt. and we discussed my sleep apnea test and then we talked about the 4th of July and what each of us were going to do. I was fine until I got home and then it hit me. On my computer desk we have pictures from the last 4th of July with Bill. On's of me and Bill, one with Bill with each of the boys and one of all four of us, one of all 6 of us, then some of Bill with each of the men that I call our adopted kids. I just went into a major one and was crying and panicing so bad that I will dealing with all of the symptoms. I called my Dr. and he talked to me about what I should and shouldn't do. At this point I don't know if I can go to the picnic that the kids are having out at our place Wed night. The memories just came flooding back and I haven't been able to get to sleep yet. I have to get some rest though for a Drs. appt. tomorrow morning or I won't make it to it.

I do wish you could get your SSI. I will do a lot of praying for you, I know exactly what you are going through because of what I went through to get mine. The stress of what we all go through brings on these attacks.

Back to Vanessa, I didn't mean to take away from your post, I just wanted to touch up on the panic attacks also. They do come with the councelling.

I realize I most likely talk too much about Bill on here also and I'm sorry for that but I just wanted to tell Allen about what brings mine on.

Hang in Allen and you too Vanessa. I'm glad to see so many of you getting the help you need for the depression.

Ada

I did try the Lyrica when it first came out. It reacted with another med I was on, so the doc changed it to topamax. Im glad it is working for you. I heard when it does work, and there is not many side effects, it really works well.

The topamax worked real well for me, but had its side effects also. They got bad enough that I had to stop taking it.

My problem is getting a prescription. When you dont have any money, and no insurance the ER is your doctor. You might get one prescription, but the refills are hard to get. It is frustrating because I feel like RSD has bound me up. Back before RSD I was a dynamo! People had a hard time keeping up with me, and now I have a hard time just walking. The rug was pulled out, and I am at the whim of RSD. It is this helpless feeling, always present, and no cure in sight.

My mind has all the answers, but my body cant deliver.

RSD has slowly transformed me from a workaholic, career chasing, dream making person, and turned me into just a person that just dreams about life. Totally against every fiber of my being, I have all my hopes on SSI. Talk about goals :rolleyes:

I hope everyone can chase away the depression, or at least find ways to deal with it. :grouphug:

Thoughts
 

Hi Nikon-
Just a couple of thoughts from a mom's point of view on the counseling that I have been through. As a mom, I am desperate to help my daughter with any tool that I may have. If it is a chance at helping my daughter get better, I look at options and decided if it is worth it. Talking to the counselor is an option that can be helpful in so many ways and selfishly, can be another way I can try and help my daughter. I know one of the hardest things she has had to do is try to find a way to open up and talk and one of the ways her therapist has tried is to talk about all sorts of other things to get to know her and to start a line of conversation. The therapist may just be trying to break the ice, get to know you and give you something that you are confident in to talk about, working up to talking about RSD. She may be trying to learn how you best cope and handle situations so she can guide you with RSD better--why try techniques you've tried in the past that didn't work?

You are probably the teacher here in teaching your therapist about RSD. She might not know what to say when bringing it up.

It is quite common for therapists to talk individually with parents during therapy. The dreaded RSD affects so much in a family that often it helps moms and dads to talk it out. My daughter's therapist was also very good at telling me to try and relax a bit.

Allen-
I have severe TMJ, no cartilage left in one of my joints, and most gone in the other. I have had it for years and the only solution I have found that has been incredibly helpful is to get a splint from my dentist. I wear it every night and can tell when it is just a bit off. I have mostly done away with headaches from my TMJ etc. I have cracked and broken many teeth from grinding and clenching and this splint has really helped. It is not an athletic protection splint but one for TMJ. Wearing it has also helped my back as I am not so tense in the morning, and saved my teeth!

As far as panic attacks go, while my daughter doesn't seem to have these, I have them all the time. I am so on edge for both of my girls that they are going to get hurt (my other daughter has had symptoms of RSD) and that her RSD is going to spread etc. Thanks to everyone here for helping me along the way, it is a good place to go when I am panicked as everyone here helps me get through each one.:hug: