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Old 12-01-2010, 07:03 PM #1
rose_thorn98 rose_thorn98 is offline
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Unhappy Can't take this anymore!

My turn to vent and to have a breakdown. Tomorrow will be 4 months since this all started and changed my life. I feel so sad and hopeless. No diagnosis...and in so much pain. My Lyrica seems to work a bit, but last week it stopped working as well, so in increased the dosage. But now, after only a few days, its again not working as well. I've been referred to a pain Dr. but of course can't get in for 2 months.

I just want my old body back. Its so hard to live like this, in pain all the time. Its so hard to be a good Mom to my little boy, and to work and to be normal. The Lyrica is making me so foggy and forgetful all the time. I just want to be my old self, minus the drug fog. Today I couldn't remember what Christmas presents I had gotten people. Sorry to be a downer, but I just have some days when I can't stay positive.
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Old 12-01-2010, 07:26 PM #2
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I'm sorry to hear your feeling bad rose. i've had mine for 18 months. the first 9 months were the worst as i had no effective painkillers, and couldn't sleep. and going without sleep just made everything awful. I now have lyrica, which helps me sleep, but i still have pain every day. some days are better than others.

although it's hard at times, i think its very important to stay positive as it will make you feel better. good luck.
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Old 12-02-2010, 06:05 PM #3
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Rose I can identify with every word but hang in there it will get better.
The drug fog will ease off and in the meantime make lists.
The pain doc is the best so good luck with that. In the meantime Epsom salts have really helped.
I still havent mastered the kids yet, I feel so guilty when I am catching up with sleep at weekends - it just isnt fair! Just make sure you make the most of good days and your little boy will adapt to any changes in your life.(at least that is what I keep telling myself)
This support group has been a lifeline for me so please come on and vent when you need to, we are all in this together.
Hope tomorrow is a better day, just take it a day at a time
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Old 12-02-2010, 07:06 PM #4
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Default Just hang ON!

It's a crappy situation to be in for sure, but YOU have IT, as do all others here. THINK/WORK on other things! Keep your mind [no matter how muzzy?] working on something constructive....such as getting on w/life or learning more & reading medical papers that can turn any mind to mush!
What ELSE are ya gonna do? Nothing destructive I hope, I mean...Thot about it very briefly, myself, BUT I figured then someone would have to go THRU ALL MY STUFF Some of it precious and throw it out? NO Way!
I too, want my body back! But What I've got to work with is what I MUST WORK with? Soo, I'm working with it. It's not fast or fun or anything... just the ability to do 'little' things that I couldn't at my onset, are always a treat!
Any new simple thing I can DO is a special worthy of a ME holiday! By 'holiday'? I mean a chocolate treat, or some Ice Cream on a cone. Things I have to deserve and get treated for! Yep. Sorta like a dog. But it works.
Don't wallow, WORK, LEARN and beat this stuff!
I speak as one who seems to keep starting over. Circumstances aren't always kind to us, but we must be both kind and firm to ourselves!
Don't know about you, but what I have I sure didn't ask for, nor could it have been predicted. IT happened! I'm learning to live with 'IT', & hope I can help you to learn as well.
!!!!!!!!!!!!'s - j
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Old 12-02-2010, 08:51 PM #5
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Everyone has those days. My husband especially, but even me, find myself often standing in the shower crying. Id love to have our life back. But I realize that its never going to be the same. That doesnt mean we've given up hope. We hope and pray it will get better. We have faith that it will. We understand that things wont be the same and thats ok. But yea, sometimes when Im feeling frustrated and Im down, I take me a nice long hot shower, have my cry, by the time Im out of the shower and dressed again I feel better, I can put on a smile and make it through the day.

Good luck sweetie, Im praying for ya!
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Old 12-02-2010, 09:12 PM #6
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Thanks for the support. I think that if I could finally get the right meds that actually worked on my pain I'd be able to deal with all this. It seems crazy to be on these meds that don't work on my pain yet make me feel so out of it. I'm going to contact my Dr. tomorrow.

I appreciate all the support.
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Old 12-03-2010, 12:33 PM #7
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Rose, I went almost three years before someone had the idea of doing a punch biopsy, I was put through the wringer before that EMG;s,, NORMAL,, so much blood work,, normal, was told and had me convinced it was a psych problem, but it just got worse,, the water running down the legs feeling, grabbing at things that werent there, a family that looked at me like I was nuts,, walking on asphalt made my feet scream,, arms and hands that finnaly went,, burning boring pain,, numb fingers, I could go on,, but you are in the beginning stages,, its miserable,, its horrible, and I have yet to accept it,, most days are just above bearable,, but now that winter has come in,, I cant do much outside,, I cant tolerate the cold,, I was at Mayo this spring,, and they could not give a answer to what is causing it,, and they dispute the fact that I even have it,, there opinion was that the punch biopsy was taken from a damaged area of the skin,, so I;m actually still at square 1,,, I hope you get your meds right, the pain is horrible, its likea house guest that wont leave,
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Old 12-04-2010, 01:04 AM #8
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Default As you know Rose..........

Quote:
Originally Posted by Feel the Burn View Post
Rose, I went almost three years before someone had the idea of doing a punch biopsy, I was put through the wringer before that EMG;s,, NORMAL,, so much blood work,, normal, was told and had me convinced it was a psych problem, but it just got worse,, the water running down the legs feeling, grabbing at things that werent there, a family that looked at me like I was nuts,, walking on asphalt made my feet scream,, arms and hands that finnaly went,, burning boring pain,, numb fingers, I could go on,, but you are in the beginning stages,, its miserable,, its horrible, and I have yet to accept it,, most days are just above bearable,, but now that winter has come in,, I cant do much outside,, I cant tolerate the cold,, I was at Mayo this spring,, and they could not give a answer to what is causing it,, and they dispute the fact that I even have it,, there opinion was that the punch biopsy was taken from a damaged area of the skin,, so I;m actually still at square 1,,, I hope you get your meds right, the pain is horrible, its likea house guest that wont leave,
I am your blood sister (older sis) through this. I totally understand, I definitely have my times, I usually cry at some point of every day, not for very long, but the tears roll down. I too mourn my old self, sometimes I day dream about how my body felt when I felt nothing.....I took it for granted, never guessed someday I would be feeling all these crazy, misunderstood symptoms. My friends of 40 years don't understand me and look at me "funny" when I descibe my symptoms, it is a lonely place to be, thank goodness for this site, where you all understand. I find myself looking with envy at others, thinking, "how nice it must be not to feel all these things."

With all that said, the bottom line is we have it and all the wishing will not make it leave. At times when I am really low, I start to think what I don't have, the things that were ruled out, even though we want a dx., we in reality wouldn't want some of those culprits.

It is a tough one to bear I must admit, not only physically, but psycologically.
Just keep coming on here for support, we will hold each other up.

On a medical note, have read Tramadol is another drug used in combination withLyrica that may be worth asking about. Also you might want to consider dabbling in some supplements, I tend to be conservative in that area (am more Western minded), but I am considering Alpha Lipoic Acid, Benfotiamine and Vit. B12.

I am planning a "plan B" myself, as I have a feeling Gabapentin and Lyrica have tolerance building issues, I have already had to increase once in 18 months.

Remember, we all help each other on this site.......your contribution has made me feel less alone.
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Old 12-04-2010, 01:33 AM #9
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Default Thank you

Yes, Invisable, we are sisters in this for sure . I too feel less alone knowing I'm not the only one in this boat. I sure know what you mean about friends not understanding. They try but in reality they just don't get it.

Thanks to everyone here who has supported me. You all get it and it helps to know you are there. All of your words have helped me feel encouraged. I'll just keep on keepin' on.....its all we can do. I hope to someday come to a place of peace with this body of mine....to accept what I cannot change. For now, just one day at a time....or one hour.
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Old 01-01-2011, 07:13 AM #10
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Hi rose i just came across your story while searching for any CTS answers.
Because your in pain your on medication know is it working?I could have alternative for you but you need to search for that in your own area.

I had pain and i have still sometimes little bit pain but nothing worse,what you need to do is look for for somebody how give percutane electro stimulation or electricity on the needle.
In hospitals they still don't know that this is working and i advice you to look for treatment like this.

Good luck
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