Late night musings - : confused:
 

the risk of this coming across completely the wrong way, I have to ask.

Has an+one else after suffering through 5+ years of horrible chronic pain, having me their future husband during that time and basically had their life become about pain, feared getting better?

I never felt this way before but now as the date fr my 5 day ketamine approaches, I find myself worrying about the craziest little things. I guess I almost feel like I can no longer remember who I was before the pain.

I know my daily habits and routines have come to revolve around the pain to the point where I fear almost afraid, as though I've lost a part of me (of course, a horrible part, but nonetheless, a part).

That said, I am tremendously grateful to the wonderful help I have received from numeromerous doctors, neighbors, my fianceel, etc...

Maybe I'm also getting my hope up a litte too high as well which is something I'm renowned for.

It's funny I guess but I suppose the pain had become the one constant in my life the past few yrs. It'S been a long nightmare, one which I hope will be coming to a close yet at the same time, there i weird, unsettliing fearllllllllllll

Just curious, does anyone else feel this way?

Dawn:confused::confused:

Dawn, I understand your concerns totally. I have just received approval for a SCS trial and really feel confused about it. If it works, I will need to readjust my whole life, I feel like it is starting over again, and I am not sure I know how. I guess I also did not know how to live a life full of horrible pain and learned to adjust, it has to be easier to adjust to having less pain. Lisa

The first timeI had a trigger point injection to what I feel is the burning golfball on my neck, I had total relief for a few hours.....until the lidocaine wore off. As my husband was driving me home I was sooooo excited. I could go back to work (that was before I had SSDI so we were hurting for money), go out with my friends, play with the kids, get back into my hobbies.

We got home and I was excited to start my first chore. My house has become a sty. I went to do some laundry.....which there was mountains of.....and realized my work wordrobe was at the bottom of the clothes mountain and I would have to wash ALL of it. Panic attack started. I had let my nursing license expire because I could not concentrate to do my CEU's or afford to pay for them and my license. Panic attack escalating. How would I arrange after school care for my kids ? What if my employer wouldn't rehire me ? I was really freaking out as if I would be expected to show up at work the next day because I was so unprepared.

By the time I finished calling family and friends to share the joy that I was cured (while trying to hide the panic), the lidocaine wore off.............




I think to survive this we HAVE to redefine our normal and plan a life around our limitations. The thought of changing everything that you do all around again is overwhelming. Even though an improvement in pain levels is a good thing (or GREAT thing !), it's still another big change.

Imagine you are pregnant. You're excited about having a family, but have some moments of panic about rearranging your life. Maybe even some reservations because you can't drink anymore, won't be able to party with friends, it could limit your career adavancement, how will you manage financially.......all kinds of worries even though it's a happy event. You're dealing with all of these conflicting emotions......then you learn it's triplets. That's happy news, but an even bigger change which is an even bigger stressor.

Any big change......like a potential for pain relief, is going to bring some doubts and ambivalent feelings.

Our fingers will be crossed for you that the ketamine works. Try to save the worrying about how life will/may change with the treatment until after you see if it even works for you. Easier said than done :winky:

Thank you Finz, I can tell you truly understand as I remember feeling the same way the first time I went for trigger point injections and tried so many other treatments over the past few years. The reality is that all we can do is hope for the past and have the knowledge that no matter what happens, we've made it through worse and have come out still fighting and finding our way back to what may be a different yet still good, "new" version of ourselves.
:hug:

Dawn

I've also considered that those weird feelings and anxiety of "What will I do if this does fix me" is just a subconcious way of NOT DEALING with the alternative......."What if this doesn't work.

When we try so many treatments and get our hopes up so often only to have them dashed, I think it's reasonable that our psyches search for a way to protect us from further disappointment.

My mom has thought it odd that I don't seem to get excited anymore about trying a new pain clinic or treatment. I'd rather just try to carry on each day and have a life. I'm not going to sit by the phone (well, maybe I am, but only because it's less pain to hang out in my chair) waiting for the call that WC has approved my next pain clinic appointment. Who knows how long that will take ? Then I'll have to wait for an appointment for an eval. Then hope the docs come up with a great idea. Then wait for WC to approve the treatment. Then wait for the treatment appointment. If I held my breath waiting, I'd be in deep doodoo :p Mom still calls every night to see if I've heard anything yet......like I wouldn't call her as soon as I do hear ! :deadhorse:

So......right now, I'm in the "it's out of my hands, no use fixating on it" ignore the possible new treatment until it happens mode.

I'm sure when something comes up, I'll be back to freak out with weird thoughts mode.

I think it's important to realize many of us may have 'atypical' responses or thoughts because we are under such stress. There are no 'wrong' reactions.

That's what I love so much about this community. When you are feeling alone and like no one can understand......most of us have BTDT

:grouphug:

Hi Dawn,

What you may want to plan for after the ketamine is some PT to get things moving again that you haven't used in a while. And to work on flexibility and posture. I got some exercises to do from my PT after I had done the 10 day inpatient protocol because my arms were so skinny and weak from disuse - I hated how they looked. I'm still way weaker than I ever was. It will take some time to get back to normal.

Ketamine has been great for me, but the results do not last forever, and I am not completely fixed. I still suffer from RSD, it's just not as profound as it was. And while I returned to work, it is extremely difficult some days - my migraines can be paralyzing. And I need boosters to hold the effect, as do most recipients (for me its every 3-4 weeks, but many others can wait longer). You will want to ensure that you have boosters scheduled or eventually the ketamine will wear off.

I sincerely hope that your 5 day inpatient is successful!! You deserve to lose the pain!! XOXOX, Sandy

Hi,
 

I was just talking to my Social Worker about this a few days ago. People sometimes think if they get better they will lose their disability.

I have gotten better but I don't think we have to worry about being cured from RSD no matter what we do. That cure is just not out there yet and may never be.

I do as much as I can, maybe a lot more then I did when I first got RSD but when the weather changes or I overdo things I have flareups.

When you are painfree for awhile you get excited thinking you have beat the RSD but then you have a wakeup call.

I honestly believe no matter what the treatment or treatments we have, there is NO cure.

You get better but NO cure. I have gotten my hopes up many times like you and I got them shotdown.

You have to do everything you can to do to get the RSD to a better place though, you just never quit going to Drs. or give up.

Ada

This was written about in Neurology Today last year.

I'm not afraid of getting well or having a total or significant remission but I am very afraid of getting some minor improvement. I was sent back to work over and over for years after I got this. It was living hell and working heavy jobs one handed was torture. My shrinks have said one of my bioggest problems is post traumatic stress syndrome from being thrown in the lion's den so many times. So now I keep imagining it's going to happen again. The pain stops frequently and when it does I feel guilty about accomplishing so little and scared that it'll be back to the lions. I just sort of yo yo between feeling useless and being in pain. Of course everytime the pain comes on it feels like it's never going to go away and will just get worse and worse.

I suppose my fears are unwarranted since it's been a fairly steady downhill course since day one. On the bright side I've gotten pretty good at controlling my symptoms and pain. Everything is a trigger now but I can avoid most of them most of the time.

I do believe thaty most of us would gradually return to our old lives if this monster would let go. I know I'd love to out and do some of the things I used to if I had the confidence I could do it. Our new lives are built around pain but if the pain and fear were gone we could probably tackle the new problems one at a time. We could rebuild our lives or build one like what we had.

I'm just trying to come to grips with the idea that I'm never going to have the chance to try.

One thing this desease has taught me is that it's best to deal with the problems and the world in the here and now. Worrying about the future or living in it isn't too good for anyone but it doesn't work well with RSD it would seem.