I am interested in talking to other that live in pain. I have fibromyalgia, severe scoliosis, arthritis in my back ,degenerating disc disease, and central stenosis. I have had the worst time getting doctors to believe I am in pain.. Can you believe that? So I have a good orthopedist. But he wants me to have surgery. And, I am not up for that.. Not right now with three little ones.

I would love to talk to others in the same place. Its often hard to make it through the days. I take pain meds.But my orthopedist does not want me on them anymore... To me this is not possible. I have cut back soo much and its miserable yet. And to be off completely ... This would be a miserable time for me.

So if you are in the same boat.. What do you do? How do you make it? What doctors do you see and what meds do you take?

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I am sorry you have to go through all of that pain.

I don't live in pain everyday but I do have a toothache today. Dh has severe back problems.

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I'm still working out all of my diagnoses with my doctors, but so far I've had fibromyalgia and Ehrles-Danlos Syndrome (III) confirmed, and there are other issues related to those that I get to deal with (frequent dislocations, lots of joint damage).

I'm on meds now. The doctor I'm seeing frequently is a rheumatologist. He flat out stated "You will never not have pain. Every day, you will have pain." Well, that's that then. The meds help some - most of my issue is inability to sleep because of pain. It doesn't help that if I manage to roll over wrong, my shoulder will dislocate, or my ribs pop out (one is currently out now - as in visibly sticking out my side over an inch - it's not attached to my ribcage - and it's supposed to be).

If it hurts to walk, I don't walk. If it hurts to use my arms, I don't do that. I know if I try to "push through the pain" I'll be looking mighty odd with dislocated joints flopping all over.

I deal with the pain by accepting thats the way life will be. I cannot do what most people do. I cannot run. I cannot bike. I can barely swim. I've had four surgeries so far on my joints, and one of them is already "failing" again. That was before we knew about the EDS.

I can talk to friends, type for the most part (sometimes a few of my fingers freak out, but I have an ergonomic board that keeps the wrists normal). I can think up ideas of things I want to do around the house, and I have a DH that is usually willing to execute those ideas. I can still garden, usually scooting around on my bum and taking breaks to enjoy things. I can enjoy life.

Have you seen a rheumatologist about the fibro?

As for meds, I'm on Ultram, Zanaflex, Mirapex and Zoloft. We are still working on finding a "cocktail" that works for me, but it's getting there.

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I'm so sorry you ladies are in pain every day. Makes me feel like a bum for my whining.

I have not heard of the meds you are on. I am sorry for your pain. Its a hard thing to accept. I have. I get upset somedays when it hurts to move or I can hardly pick up my little boy becuase he is so heavy and my back will not allow it.

I am on lyrica, ibuprofen, percocet some other muscle relaxer (cant think of the name right off). So far no luck and I just am annoyed..

Ultram for me was just pointless. I have bottles of it now. I take it occassionally but its just not that great of a pain reliever for me.

now that I cant drive to my family dr i am trying to get a dr that will listen so i can get established and get things rolling again. I need to get into a rheumatologist and a neurologist. I am trying to find a good pain specialist too. But that is proving to be challenging. there is not much online in the way of helping chose a good dr. I guess for everyone its different. But this trial and error thing is getting exhausting.

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I'm sorry you are dealing with these problems. I too can relate to a degree. Since I had my youngest son (1 1/2 years ago), I have had constant back/abdominal pain. I am having a hysterectomy in a few weeks to hopefully cure the pain. It was a journey to find a diagnosis and I just kept on going to more doctors until they figured it out. It took about 8 doctors and 6 VERY invasive diagnostic testing to finally figure out the problem, but they did. I would keep trying different doctors and if they think surgery would help, it sounds like a good idea to me. It is hard with little ones, but if you don't feel good it's hard to play with them and take care of them. Another thing I find important is educating yourself as much as possible about your current conditions and treatment.

Good luck. I know it's hard, but we are praying for you!

The Ultram doesn't do much for me, but like I said, we're just trying different combinations. I can't take NSAID's like the ibuprofen because of the EDS (bleeding issues). After what he said, well, I don't really expect miracles! LOL

I have so many pain meds, it's a good think I'm not a junkie. I have Darvocets, Percocets, Vicoden, etc all hanging in their bottles in my drawer. I throw them out when they expire.

I don't really think about *not* having pain - wishing it away. It won't happen, so I adjust life accordingly. Sometimes missing out on fun things sucks, but that's the way it goes. I cannot carry or hold DD for very long while walking or standing, either I fall, or something comes out. I miss not being able to do things like that, like other mommies do, and sometimes I feel bad because I don't hold her as often as maybe I "should", but we interact all day - even if it's me laying on the floor with her, playing

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Sorry to hear about you daily pain. I hope they ae able to manage it better for you!

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Are these confirmed diagnosis? They're in your medical records? Then I can't understand why a Dr would have a hard time believing you.

My Aunt has MS and fibromyalgia, I wouldn't wish that kind of pain she goes through on anyone.

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Life isn't about waiting for the storm to pass~ It's about learning to dance in the Rain

Yes. I have ankylosing spondylitis - a chronic, systematic inflammatory condition (arthritis) in the same family as rhuematic arthritis, psoriatic arthritis, lupus and Crohn's disease. Fibro is often an element of the disease. Here is a site you might find helpful ...

Spondylitis Association of America - Ankylosing Spondylitis and Related Disease Information & Support

Trying to raise an active child while dealing with a chronic disease is a challenge. At least she gives me a reason to force myself out of bed in the morning. But there are 'bad days' too when I can't do as much as I'd like or need to cancel activities because I'm not up to attending. Unfortunately, I never know which is going to be a good day and which isn't.

I take lots of anti-inflammatories. Currently I'm trying to get off of prednisone. I'm also on Cymbalta - an anti-depressant that is proven to help with chronic nerve pain. I refuse to take opiate pain killers. I prefer to be more awake and aware while caring for DD, especially when hubby is away on a biz trip. A real-life support system - meaning friends who can take DD when I'm at my worst - is essential.

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"I've been rich and I've been poor but independently wealthy is where it is at."