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Posted 4/26/2015 12:29 PM (GMT 0)
Hi all, Just found this site. I was diagnosed with MS in 1996 but think I've had it since 1983. It all started with mainly pain. Original diagnosis was fibromyalgia which was updated to MS after 5 years. Still my main symptom with the MS is horrible pain. If it wasn't for the pain meds I would have left this earth years ago. I tried everything to stay of of narcotics; hypnosis, homeopathics, bio-feedback just to name a couple of them. Finally I had to give in. I've been on pain meds now for about 20 years. Though I hate being physically dependent on them they allow me to live a somewhat normal life. Not many people understand at all. Even on another chronic pain site a couple of years ago one woman told me she understood so well since she had to take Advil a couple of times a week and hated that. Boy, don't I wish. I look forward to finding others that understand. This can be so isolating.
Kathleen
Posted 4/26/2015 12:48 PM (GMT 0)
Hey Kathleen.Welcome to HW.I assure you that you're amongst kindred souls here.lol

Most here are in Pain Management or are seeing a specialist.

I take MSContin and Morphine IR for breakthrough.

I've been living in the pain world for the last 13 years.

Last Summer I finally found a PMD that is an Angel.

She told me 1st day that she was going to make my pain go away.She's done a pretty good job.

Welcome aboard.Look forward to reading your Posts.

Take care and God Bless.

Rick
Posted 4/26/2015 2:45 PM (GMT 0)
Hi Kathleen & welcome to the forum. Glad you found us but sorry you have to be here. I love the Advil comment, if it were just that easy & simple, to take a couple a week, lol. Wow, is all I can say.

I have always heard it can be very difficult dxing MS. A friend of mine went through every neurologist in our large city including another large city & no one could figure out what was going on with her. She gradually lost her eyesight in the very beginning & after a couple of years it started coming back very slowly. To date she still does not have all of her eye sight back, some days are worse than others for her. She ended up going to a clinic in Florida where her mother lives & they see MS patients only. This is where she was dxed at.

Yes, chronic pain does have a way of isolating us & that is an easy trap to fall into. I do hope that you are able to get out some on one of your better days.

Anyway, I wanted to pop on & say hello & welcome aboard!!
Posted 4/26/2015 5:12 PM (GMT 0)
Welcome Kathleen,
You will find the support here. I too hate being on narcotics and wish I could just pop a couple Advil here and there but it's not reality with chronic nerve pain. It's hard for anyone to understand except those that go through it. I have a friend that thinks the meds are causing me pain!! That if I get off them and let my body detox that it would stop craving pain meds! It's ridiculous. And us CPer's would never wish this pain on anyone however if they could just feel for 5 minutes they would understand. Prayers for ya. Welcome Again!
Posted 4/26/2015 7:10 PM (GMT 0)
My Mom is about to turn 80.She's from the generation that if your back hurts go have Surgery as soon as possible.

And because of the abuse of pain meds,then nobody should take them.She'll think that until she needs it.

I gave her a bottle of zanaflex when she was down in her back.

Nobody understands that hasn't dealt with unrelenting pain.It's a day to day existence.

Take care.

Rick
Posted 4/26/2015 8:00 PM (GMT 0)
 

  smilewinkgrin Just my 2 cents, which seems to turn into Benjamins, word-wise!

First...WELCOME to HW...You are now among cyber siblings who understand your woes. We try to sprinkle in a little humor here and there. 

However, I think anger and rage rears its head for all of us from time to time. Pain is such a complex thing.  People who don't have it tend to "oversimplify" solutions for us.  They don't have a CLUE!

I have a sister who took to a wheelchair with a broken pinky toe (for 6 weeks).  I broke mine while building a fire pit, yet I finished the build and hosted 17 folks for a weiner roast that night...never checked up. 

I have suffered with pain for most of my life...even childhood.  I have an extremely HIGH tolerance for pain.  I'm talking the kind that would put most folks I know in a fetal position of insanity.  Don't get me wrong...pain and suffering is not a peeing contest...not for me, anyway.

That same sister has told me over the years that "Motrin is all anyone needs".  When I was having a root canal, she said "Why don't you just have them all pulled and get false ones?".  Bee-otch, I have a mouthful of porcelain crowns that I don't plan on having pulled. She KNOWS I had to take a bank loan @ 18 to pay for having all my teeth crowned.  She KNOWS how important my teeth are to me...How could she say something SO heartless and ignorant?

This post has gone into Benjamins, so...I'll hush soon.  She's the sister who made a surprise visit back in March, knowing I was face down in my own vomit with Fentanyl trial.  She stayed 8 days.  She came in with all of her health "issues" and "equipment" and her "list" of things she needed.  She wanted us to take care of her...huh?  Why did you come here now?  I can't take care of me.  My DH is afraid I'm going to hit the exit button on life (even before her arrival) and she shows up "sicker than me". I couldn't eat or poop.  All I could do was sleep, as the Fentanyl was spiking my temp and dumping through night sweats.

The GOOD NEWS is...Both she AND the Fentanyl are out of my system.  The Fentanyl won't be back but I'm sure the needy self-absorbed sister will.

 

~Dixie

 

Posted 4/26/2015 10:45 PM (GMT 0)
I think most of us run into the uninformed. I've had pain forever. I was born with a disorder that causes my joints to dislocate easily. Reaching above shoulder height dislocates my shoulder, swimming can dislocate fingers and toes, and stepping wrong can dislocate my kneecaps. I'm used to that and can "pop" them in on my own. I've had arthritis since I was 8 and because of kidney problems I can't take nsaids. Most drs say I'm too young for any treatments. I have family that think surgery is the answer and others that don't think its possible to be in much pain when I'm only in my 30s.

I wish people could understand but you have found people here who do. I hope having understanding people helps.
Posted 4/26/2015 11:32 PM (GMT 0)
Welcome, welcome, welcome!!
You WILL find people here that 'get it'. It's doubtful you'll ever hear some relling you to take a Motrin and get over it. But you'll also find folks, like me, that can only relate to bits of the physical, emotional and spiritual struggle in the chronic pain world. I try to be as empathetic and supportive as I can--could be I end up needing those kinds of interventions, and how debilitating it must be to feel so misunderstood.
I've only had to manage chronic pain for a couple of years...twenty or thirty years of it seems like too big of an undertaking. You must possess amazing internal strength--which I admire, hugely.

Welcome to the board. I hope we can help, if even a bit, to ease some of the isolation that we all seem to experience.
And I know you'll discover numerous kindred spirits here wjich makes it all worthwhile.
*hugs*
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