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Just a hello and a bit about my chronic pain.
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YouDontLookSick2013 posted:
Hello, I just thought I would pot a little intro. My name is Lisa I am 39 mother of two. I have been dealing with pain issues for the last 13-15 years. However, over the last 2 to 3 years it has gotten worse. I have Fibromyalgia, being tested for Lupus, Migraines, and I have chronic back pain. I just had back surgery 7 weeks ago so I am dealing with post op pain and Fibro pain at the moment.

Thanks for letting me join your community.

Lisa
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ctbeth responded:
Hi Lisa,

Wow, lots on your plate.

How are you feeling regarding the back surgery? Besides tired- right?


I mostly want to say hi. I'm having a bit of a rough time of it right now, so I'm online a whole lot.


BTW, you can make a little profile that is visible only for this group, so you don't have to be concerned that everyone on Earth can see it


I have written a very brief, "My Story" which you can read by clicking on my name or little pic.


I like it mostly because I don't have to explain my (tiresome) history over-and over. I also really appreciate when others have their story, too.


Please feel welcome here, but you may also like to see the Fibromyalgia group. Just scroll down to the bottom of this page and you'll see, "Web MD Fibromyalgia Support Community"


Take care and get well soon,


CTB
 
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77grace responded:
Hi and Welcome Lisa,
Thanks for letting us get to know you !I also suffer from Chronic pain for over 20yrs. and latley its been over the top so I do understand and want you to know I'm here for you anytime if you just want to touch base!
Hope you heal quickly from your surgery,what kind was it??
77grace
 
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lorigibs40734 responded:
Hi Lisa!

I too have fibromyalgia, suffer from migraines, and have chronic disc herniation's, among other things. I FINALLY figured out how to get to "My Story" and wrote a very short version of my ailments. (about time eh Beth?LOL!)

I have two girls, ages 24 and 17. It still hurts me to say that my baby is 17! LOL

Btw, LOVE your name as some of my family members say the exact same thing to me and frown upon me taking any kind of narcotic. Very frustrating, so I don't go around them unless I can't get out of it.

I'm pretty new here myself and learning how to navigate through the site.

Welcome!

Lori
 
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smann68 responded:
Hello youdontlooksick2013! I know what you mean in regards to people saying that you don't look sick. we have invisible diseases and most people can't understand. I have some of the same issues. I hope you feel better soon.

I have posted on here before but am fairly new. I have now posted "my story" for anyone who's interested.

Hi CTBeth, I have talked to you before.
alwaysinpain
 
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ctbeth replied to smann68's response:
Hi smann68,

Yes, I do remember you, of course.
I do not think you've been about for a while now.

Nice to see you here, but wish that you- actually, that none of us needed to be here.

I hope you're doing well.

Bet
 
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ctbeth replied to lorigibs40734's response:
It really must be difficult to have someone doubt the validity of your pain and disability, but it also must be nice to look good

I get so pale when pain is bad, that I look like an Irish ghost with dark under-eye circles.

I've lost so much weight these past few months, that my clothes hang off of me.

If we're in pain, it's miserable for both situations.

340 AM and time to try to get back to sleep....
 
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racknstack responded:
Lisa,

Have you gotten hooked in with a good cognitive behavioral therapist who has experience in working with chronic pain patients? A support group (other than online here) where you can go and discuss things, share tips, etc? Chronic pain, I have found, is maddeningly difficult to treat with medications alone. Good luck.
 
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ctbeth replied to lorigibs40734's response:
Hi Lori!
I've been thinking about you and wondering how Kayla has been the past few days.

I hope you're having a relatively comfortable week.

Talk soon

Hey, nice "My Story". I'm sorry that you're experiencing so much yuck. How articulate, right, "Yuck:, LOL.
 
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dfromspencer responded:
Hi, Y.D.L.S.

I too suffer from chronic pain, since around 1981. Not much fun, is it? I have just had neck fusion surgery this past Dec. 31st., three disks this time. The first one, done in 2004, was only two vertibrates fused. The first one was a breeze compared to the second one! Oh that hurt!!! I am just now getting over the last of the pain, (from the surgery) in the middle of my back. Middle of my back? Yep, the doc said they put in bone chips to bring me back to my normal highth. And that caused some compression on my spine.

Otherwise, I suffer from nerve damage. I get the awful pain, and burning all down my right side, especially my right arm.

I would like to welcome you here, please feel free to post whatever you like. I'm glad you've come to join us fellow sufferers!!!

Dennis
 
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ctbeth replied to dfromspencer's response:
Hi Dennis!

It's always nice to see you here.

Interesting that I also had a tougher recovery time with the cervical spine fusion (three level as well), than the lumbar-spine fusion.

It's amazing what ageing does to our recovery time.

I'm glad that you're feeling better and hope that you'll be much better to enjoy the summer.

Take care,

Bet
 
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smann68 replied to ctbeth's response:
Hi CTBeth,

I'm sorry to hear that you're still having so much (extra) pain-as we all have pain everyday, but there are days & times that it is much worse.

Have you been able to get your battery re-charged or whatever it is that you needed to get for pain relief? If not, when?

I've not written for a while, but I've been reading. There's a lot of times that I just don't feel able to write, but I still read.

Hope you get some relief soon. It can really get on your nerves to have this go on for a long time.
alwaysinpain
 
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ctbeth replied to smann68's response:
Hi smann68,

My battery is not re-chargeable, so when it dies it has to be surgically changed. This one last exactly twenty-four months plus one day.

So, the insurance company took a month to approve the surgery, and now that it's been approved (On Monday), the neuro-surgeon's office manager told me that she's definitely ring me up on Thursday to give me the OR date.

She did not ring, so I rang up again yesterday and she didn't come to the phone, but the receptionist told me that the office manager would ring me back before the end of the day.

She did not do so.

I have gone to this NS only for my SCS. He didn't do either of my fusions. He's done five surgeries related to the SCS.

This office manager is new this year. In all of the time I've been with this neurosurgeon, Dr A., I've never so much as been late to an appt. I have never rang up to speak with him, do not get meds from him, and this cannot be personal toward me, as I merely show up once per year and have never had a bad word with anyone there.

Actually, I say (write) a lot on this site, but in person I am soft spoken and listen more than speak. I have a slight accent and a speech impediment. I am not an aggressive personality in any way and seldom engage in raising my voice and am very slow to anger.

I cannot imagine that any of his office staff would have a personal dislike of me.

As it stands, I spoke with the St Jude rep last night. The plan is that I'm going to ring up the office on Monday. If I am not successful in securing an OR date, I'll then ring the rep, Rob is his name and he's been the rep with whom I've communicated since before implant, and he'll call Dr A on Tuesday.

I am stuck in bed today as the pain is totally out of control. I've significantly reduced my pain meds over the last few months, so I'm living with pain that is mostly managed by SCS.

I do have the option of increasing my meds, but I do not wish to do so. Then again, I cannot take much more of this.

Drastically under-treated pain for over a month has left me totally exhausted (we all know that pain depleting our reserves, right?) and I'm not up for much more fight.

Yet, life goes on, and I hope that I'll get this resolved soon.

Thank you so much for your concern; it does make a difference to know that there are others (you) who understand.

Love makes the intolerable seem less-intolerable.

G.B,

beth.h
 
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smann68 replied to ctbeth's response:
CTBeth,

WOW...what we have to go through, right!? It's not like the pain & suffering we go through isn't enough....if some of these people could understand the amount of pain we are in, I think they would treat us better. I have found that some of the best dr's and surgeons' office's are the hardest to communicate with.

I'm sure that this has nothing to do with you personally. Their either just too busy or too lazy to return your call. Sometimes you have to be "not so nice" to get some assistance. But, then again, you don't want to burn any bridges either.

The last thing you need right now is to have to do all this calling & calling. So sorry to hear about all this trouble.

I hope you can get somewhere with it on Monday and get a surgery date soon!

I know when my pain is over the top for day after day, my nerves get bad too.

At least you can up your meds if you have to.

I absolutely do understand and empathize with you!

I hope you've had a better day today.

Susan
alwaysinpain
 
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ctbeth replied to smann68's response:
Thanks so much for the words of encouragement.
This group is my "lifeline" right now.

I hope that my many comments do not offend anyone.

There's not a whole lot that I can do right now but the telly, which interests me little, although I recently subscribed to Acorn.com, a streaming site that carries the BBC shows, sleep a little here and there, read, and try not to be a total pain in the arse to my daughter and my BFF.

It took months for me to titrate downward from 210 mg MSC per day with Oxy IR 15 mg twice a day, PRN to 120 mg MSC and Tramadol as PRN.

If this continues for much longer, my pain MD will prescribe the Oxy IR again, and even go up on the MSC, but I really, really do not want to do this. It was uncomfortable lowering it and I'd rather not go through that again.

So, as the devil says, "It's got to be one or the other".

If you click on my name or, "mug shot", you can read "My Story". At the end I have my email address posted.

Since I'm essentially housebound, I'd enjoy email from anyone here. Don't feel obligated, but if you'd like, I'd really like.

Enjoy your Sunday,

Beth

Thanks for your kind reply.


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