Re: new member and question for veteran members-Nikki

[Guest guest]

Nikki,

First off, welcome to the group. I'm sorry you had to join us here,

but glad you found us! There are a lot of us here who are being

treated for certain types of pain that has no " official " diagnosis.

I have the same problem with my back. At first, I DID have one disc

bulging, but it healed, yet my back was still hurting, and no one

could explain it. My pain area is lower than yours though, in the

lower back and SI area. I was in a car accident too, Christmas day

of 1999, and had whiplash, in my neck, and middle back, but after 6

weeks of chiropractics and then another 8 of PT, I felt pretty

good....for a while.

It flared up again in about 2001, with my doctor scratching his

head. More PT didn't help, and MRI's showed nothing but that one

bulging disc that a physical medicine doctor said would not be

causing such widespread pain. I've had 2 more MRI's in the past 6

months, with them checking for ankylosing spondylitis, a type of

arthitis that starts in the lower back, particularly the SI area,

but they were both clean, much to the surprise of the doctors, and

frustration to me. No diagnosis.

My PCP sent me (passed me off?) to a pain management doctor. The

first one was horrid, but the one I have now is great. He first did

steroid injections, which didn't last too long, but finally

identified the areas of my back that were the root of the pain, and

I'm in the process of having RF nerve ablations done. What happens

with RF ablations is they go in with a special needle, which is then

super heated to " numb " or paralyze the ends of nerve root branches

on a semi-permanent basis. I've had the left side done, and next

week, I am going in to have the right side done. I'm telling you,

it's made a big difference on the pain level of my left side, and

I'm actually looking forward to getting the right side done. I'm

totally sedated, so I don't remember a thing! But still, he's never

really called it anything that I know of.

I also use " alternative " methods to treat my pain. I meditate, and

I go see an Ortho-Bionomy practitioner every 2 weeks. Ortho-Bionomy

is a type of body work that uses certain types of movements that

work with your body to get a " release " of the painful areas. It's

basis is in Osteopathy, and it feels so wonderful. That's what is

so great about it, is that if something hurts, the practitioner

immediately stops...O-B is meant to be a painfree form of treatment,

and I consider it to be somewhere between massage and chiropractics,

but unique in it's own way. They also do cranio-sacral therapy as

well. Each session is so different for me. I can come out feeling

like a limp noodle, or ready to take on the world.

Now, as for the " rest " of my diagnoses, I have Fibromyalgia,

periodic limb movement disorder, Bipolar II disorder, Baker's cysts,

and residual pain from shoulder surgery done in 2003 that I can't

convince my PCP is getting worse.

I have dealt with family and friends who think I'm whining or think

it's not as bad as it is, but I just tell them " Hey, wanna live in

my shoes for a month with NO treatment meds? " and that kinda shuts

them up. You're going to find that some of the people around you

are NEVER going to understand, and that's not your fault. But you

can't waste your energy on them either. The ones that DO understand

are a blessing. I don't know how many times I've faked a smile and

said " I'm just fine " when asked by certain people. But then there

are others that I know I can let it all hang out.

And then there is the group. Here is the place where you never have

to try to explain your pain, or justify it, because all of us " get

it " . We know what it's like to live in a world filled with pain,

doctors, treatments, meds, ect. This is the place you can be you,

and not worry about being called a whiner, and people WILL care how

you are doing. Here is the place where I found one of my very best

friends in the world. We talked back and forth, just totally

clicked, and have been friends for what seems like our whole lives

now.

If you can, check around your community, such as hospital or mental

health facility, and see if there is a chronic pain group in your

area. I'm not trying to avert you from here, but face to face

support can be invaluable too. And keep after those doctors of

yours to figure things out. What all have you had done?

Again, welcome to the group!

Jen