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does any one remember feeling "normal"?

Nov 12, 2015 2:14 AM

I have spent most of my life in pain, I was diagnosed with CRPS at 11 and I'm 18 now. So 7 years of constant pain. I really don't remember anything before age 10-11. When I hear people talking about how they miss their old life and what not it gets me thinking. I don't remember what no pain feels like at all. And I guess I'll never know that feeling. Tonight I got to thinking about what no pain actually feels like after talking to my boyfriend. I can't seem to even imagine it. I wish I could just feel no pain for 5 minutes. Just so I can remember it. Hmm. Any one else have thought about this?




UPDATE ABOUT ME: I am also still in the hospital but should be getting out soon. I get my shots the 25 so if they work I should be able to leave after that. :)

Nov 12, 2015 2:47 AM

I can honestly say that I know how you feel. I felt the same way until the doctor said I could get a pain pump. At the trial I really felt no pain for about a day. Now that I have the pump inserted I have good days and bad days. My pain is really minimal but I have flares at times. Most of my symptoms now are fatigue, headaches, and just not feeling good. I don't know if this is even a remote possibility for you, but maybe you should discuss with your doctor to see if this is a possibility. If so, and/or you would like more information, don't hesitate to let me know. I really hope you can find an answer for your pain! I am so much happier now that I have less pain.

Nov 12, 2015 2:49 AM

What are you all diagnosed with?
My Dr said that at the rate that my CRPS is spreading that there's a chance my pain won't ever be lowered past a 6

Nov 12, 2015 3:11 AM

Have you ever discussed a pain pump? Honestly, I'd rather take a 6 any day over 9/10. That was my life. I hurt I couldn't get out of bed to walk. Now my pain issues are more about when I do more than my body can handle. For instance I went to the store today and bought some groceries. I haven't done that in over three years. I was glad to be able to do it, but I paid for it in pain flares.

As for my diagnosis, I had two scoliosis surgeries that I now have chronic pain. There are several other things going on as well that have affected my nervous system. Between the two my life has been turned upside down in the last two and a half years.

Nov 12, 2015 3:22 AM

I have discussed pain pump. They are waiting to see how my shots work out on the 25. Also. The fact the the CRPS has spread all over just makes a 6 sound horrible. I want at least a 5. But idk. I am currently at a constant 10+ if that is even possible. Which is why I am stuck in the hospital. I just want to be able to live a half way normal teenage life for once. I have never been able to be my age. Ever. And now I'm 18 and I dont even have my temps because I'm in so much pain. I just kind of feel "behind" on life. Doctors are starting to give up. The chances of me being in a wheel chair for a long time are high at this point...
Sorry kind of went on a rant right there...just stressed

Nov 12, 2015 5:02 AM

Hi Jenna, I know what I'm about to say is out there. ..... But could you picture a realistic place that you love to look at and be in. And at some point go for a couple of days and stay there as a holiday. Hopefully a good/close friend could be there with you. if not make the effort. pain will be with you, but your heart and mind could give you that 5mins, even if it takes time to go there it gives you something to strive for. Now I've said that I'll set a goal. I think WE all do. Chronic pain is immense, we deserve to give ourselves something, not let it ruin our lives. daunting. ..but here goes. 😨bye Greg

Nov 12, 2015 8:34 AM

I haven't really ever been "normal" and as a teen, it's always strange to hear someone talk about strength and joy of youth, or whatever. I have never felt that.
I mean, my family has health issues from birth, plus I'm beginning to suspect the reason my for didn't ever really stop having CRPS symptoms, is that in 3rd grade my friend dropped a sheet of glass on it.
The nail is still really messed up, and the pain comes back probably a dozen times a year.
I'm only at a six daily, and if they can get your pain level down to that, definitely give it a shot. I don't know what docs will think, but have you tried DMSO (dimethylsulfoxide), kava kava root, magnolia extract, or lemon balm? They might be worth a shot to reduce pain.
I have no life without pain. There are happy moments, and the moments where the pain is so bad I just wanna scream,but the pain is always there.

Nov 12, 2015 8:59 AM

Nope, it's been a hard year this year. What is normal anyway Jenna?

Nov 12, 2015 2:45 PM

On the rare days that I have a real low pain day, I guess I should just relax and enjoy it. The problem I have is I reflect on the moment that I feel really good then I get sad because I know it is not going to last. I find myself saying wow the old LMB is back. I guess I just need to take my own advice and get out of my head. If I could only turn the brain off. Normal was nice however, it does not seem to be my reality. My opinion is we all end up isolated because of our limitations and we know what happens when we push it. Due to constantly changing weather "Normal" is just a setting on the dryer.

Nov 12, 2015 5:21 PM

I have asked myself this question. My family has made statement in the past like what will u do once u r back to normal... And I honestly don't know. I've hurt and faked it for so long. I can not remember the last time I felt great.

Nov 12, 2015 6:22 PM

I was "normal" I guess you could say until middle school and then I had constant back pain and I didn't know why and one day they did a scoliosis test! Yup! That was just the beginning of my trouble! I tried to have a normal life even did police explorers, ROTC and did sports medicine and got married and had 2 kids! But it just added to my back problems. I try my best with my kids despite my pain and now the Aunts Cancer problems, normal in my house is over rated!

Nov 12, 2015 10:38 PM

I totally remember normal, up until about 4 years ago. I've had chronic headaches for about 22 years, but not constant, so there were good times in there. But in the last 4 years, I had a really good day with almost no pain about 8 months ago, and again about 3 days ago. I know not to push because the next day could end up being horrific. .. but I want to get all I can out of that one day! It's always a toss up!

Nov 13, 2015 12:19 PM

What's normal to one may seem abnormal to another. It's like trying to decide if the glass is half full or half empty. I mean if we seriously look at every aspect of our lives, from birth until now, in my opinion we are the normals. Those born with "a silver spoon", who've had the ultra easy life with no challenges, no financial problems, and healthy beyond belief, those are the abnormals to me. To me they are somewhat shallow and a lot self centered.

I grew up in a dysfunctional home, from both sides of the track (as the saying goes), one rich, one poor. Having broke a leg in 5th grade I've dealt with pain in cold weather since then. I've always had a low immunity, staying sick with chest and throat issues as a child on up, but it worsened 15 years ago with my asthma & chronic bronchitis. I've had multiple surgeries & new dx issues for 32 years. I've fought depression & anxiety all my life, but didn't know what it was until 27 years ago. I've had Arthritis and DDD for decades. But in the past 7 years I've had to face while body daily chronic pain, from various issues. Some days are easier than others, and some are hard beyond belief. I only vaguely remember days in my teen years that I would consider primarily pain free. To me, I've always thought it was normal to face challenges, to have pain. If it wasn't physical pain, it was emotional pain, but regardless there's always been some type of pain in my life.

This is just my thoughts on the subject, my way of viewing it. I tend to look at it with the glass half full. Some days I suffer more than others. Regardless of which I feel, I am blessed. If I were in the group I consider to be abnormal, it's doubtful I would have met any of you wonderfully compassionate and caring people. Wishing a very blessed day to you all! 🙏🌼

Nov 15, 2015 4:31 AM

I do remember norm. That was 13 years ago. I yearn to get back to that place. I was abused and tormented for my mother's pure enjoyment. I just finally cut all ties with her a little over a year ago. I have scoliosis too so I've had back pain since middle school. I have pstd, seemingly untreatable anxiety and depression, fivromyalgia, bulging L4,L5 discs, sciatica, arthritis, headaches, and terrible social anxiety to where I can't go to the grocery store or my son's basketball games or have a casual conversation, or even walk my dog around the block without thinking that people are watching me and picking me apart.
Normal to me seems too far away.

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