[Silverlady]

I posted on the chronic pain forum and only got a little feedback. I'm in pain, lots of pain and it's simply more than I can live with anymore. I've been taking hydrocodone in the 10/500. It is doable. I'm taking 3-4 of them a day. My biggest problem is probably still my tailbone/sitdown area. I've exhausted all the nerve blocks and frankly the new pain specialist doesn't think nerve blocks i.e. steroids is a good idea for me. The hydrocodone dulls it some. But it is always on my mind. Sometimes I have to tune out conversations and pop back in hoping I haven't missed much. But I know the person I'm talking to knows I'm not really there. Pain is all I can think of. It's just hard to concentrate on anything and i'm so irritable. Noise of any kind makes me want to scream.

I'm finally walking a little without crutches. But not too far or too much. It's still a limp rather than a walk. I'm having a test next week to determine if the neuropathy is affecting my bladder. And I had a little boo-boo under my eye right in the fold of the lower eyelid. But after it didn't heal for about 3 weeks I called the doctor and went in. He thinks it's a skin cancer and has sent me yet to another specialist. It will have to be removed very carefully. There isn't much skin under my eyes and the muscles to the eyelids are very close. So you need someone who knows what he is doing. I understand this doctor is good.

Back to my original problem. The hydrocodone isn't doing it. And you all know how bad I hate pain medicine. I'm taking Lyrica which keeps some of the burning down. I don't know if the fractures accross the nerve are irritating the nerve or if there is a new one. But I stay sore, very sore all overthe sacral and hip areas. And if I sit on a hard seat I'm in the bed the next. All of this has affected my self image terribly. I realize now that I'm a cripple. No other way to say it. And my self confidence. I'm afraid to get in the car and go like i used to. I feel as if I need my husband with me in case I fall, faint, get sick, etc, etc, This is so not me. He taught me to be independant. Pain is a wicked animal. It stalks me. Rakes it's claws accross me. Chases me into high grass then lights a match and watches me till I burn. And I'm burning. I want to enjoy life again. There is so much more I want to do before I die...I have to make some decicision about pain and what to do about it before it gets any worse. I can try oxycodone or ask for a morphine pump. Mrs. D, you mentioned this to me once before. Do they work well? What problems do you forsee with it? I just can't keep living like this.

Billye

[Aussie99]

I read your post and it gave me the shivers. I feel for you, you probably are sick and tired of being sick and tired. Before I had the surgery on my spine, I was in so much miserable pain my body was deformed looking and I was leaning to one side. I also had a baby. I couldn't sleep,eat,sit, walk... nothing. I didn't use the internet much back then and didn't know what pain meds were available to me. The only one that completely took the pain away for me was morphine. Other codiene based meds only took the edge off for about an hour or two before I needed another pill.

There is a possibility that you could be trapping,irritating a nerve in your tailbone area. Have you had an MRI? Maybe a pain clinic can help you. It doesn't sound as if your medication is giving you the releif you need. When I am in pain I use heat alot too. I have an electric heat pad,tiger balm,and a hot bath. My disc L4-L5 has reherniated,and gives me alot pain in tailbone area and sciatic pain.

I think if you found a doctor to help you manage all this pain it would help you.

I hope you feel better soon. Sorry to hear about all the pain.

[Brian]

Billye, I am so sorry to read that you are suffering so much, it's just not fair at all, i am wondering if a T.E.N.S machine may be of some help around the tail bone area, i mean using it in conjunction with what ever medication you need.
I was using a very similar device to a Tens machine before my hip replacement operation [plus very strong magnets], they both did help with the severity of pain.
I really do hope you can find some relief from this awful pain soon.
take care
Brian

[mrsD]

I am so sorry for you....

Brian's suggestion is good. Also an IFc unit at home may also speed healing.
PT's usually suggest them.

I know how you feel about losing independence. This past year for me has
had shades of that. I often have my husband come with me now when long walking heavy lifting errands bog me down!

Have you tried Lidoderm patches? They work for me quite well. I'd be miserable without them.

[glenntaj]

I don't have much more to add as far as possible pain relief methods go--I think trying something local, like the TENS or the Lidoderm patches, would be worth it before going onto heavier meds or considering a spinal implant, just to see if the edge can be taken off--but I did want to send you empathy and gentle hugs (really gentle, I know).

[Silverlady]

I've used the tens, used the Lidoderm patches, used the muscle stimulator, had PT for pain, I've just been there done that with all of the less invasive things. They take off the edge, but it's just not enough. I've even combined some of them. I used Lidoderm patches at night, Tens and pain med in the daytime and Muscle Stim. in between. Brian, I bought the magnets but can't find any place where they seem to do any good.

I do think it's possible there is some nerve damage in the tailbone, sacral area because one of the breaks was accross the S3 area. But nothing shows in the MRI's. The neuro says that doesn't mean there isn't damage there tho. It wouldn't be the first time that someone had pain that no source could be found for. And I've had this tailbone area pain for so long. We've done all kinds of testing to find the source of it. There is restriction on that side in the knee area, ankle area and some in the hip area. Like there is a giant spasm that won't let me go. I walk one sided like my spine is twisted some. And I lean to one side, one hip higher than the other.

I'm just so tired of the pain. Just don't know what to do and I'm very afraid it's not going to leave.

Billye

[BEGLET]

I'm sorry to hear you are suffering so much - but you cant give up.... I'm not expert on the meds at all - but did have a friend with severe autoimmune issues that also were accomanied by severe back pain - she was on constant morphine - which cut the pain but caused constant nauesa that she also had to take meds to control, and made it dangerous to drive on the med combo.... is morphine an option for you however maybe just at home? She also had a morphine pump put in her back - it cut the pain a great deal and reduced her dose of the drug - but she had a slow spinal fluid leak from it and resulting headache and had to have it taken out... this was several years ago - maybe they have perfected this technique more?

I sure hope they can find you some relief - sending good thoughts....

[MelodyL]

Hi Billye:

Besides echoing all the sentiments that others have wished you, I have only one question.

What does your doctor say about your pain? Does he truly think it's okay for one human being to be in pain like that?? I know physicians differ as far as pain management goes, but I haven't read where you mentioned how your doctor is addressing this.

Is he saying "we can get you a morphine pump because a morphine pump is what you need" or is he perhaps saying "what you need for your pain is this,(and he mentions some kind of product) THIS WILL DO THE TRICK".

Just curious.

No one should suffer like that. NO ONE!!!

I hope your doctor comes through for you. Sending you a gentle hug.

Melody

[dahlek]

If only I could have the magic ability to take some of your pain onto me even for a little while, I surely would!
I only wish I could come up with some medical 'magic' from somewhere. I'm not tho.
Just sending you as much extra love as you want or can handle and know you are near my heart and in my mind. - j

[Silverlady]

Melody,
He's not pushing anything. He is entirely leaving this up to me. He tells me after seeing the xrays and ct scans that he has no doubt that I'm in lots of pain. He is letting me call the shots. I have opted not to increase the medication up to this point. But I'm weakening. I just want a little of life. I've been "wearing" a lot of pain for years and then this year it all increased. My husband tells me I have new wrinkles around my eyes and mouth and he can tell they are pain lines. Grimaces, squints, tooth gritting, etc. They aren't an issue with me. But his ability to tolerate my crabbiness is.

I was just looking for more information. I'm not ready to make any decisions.

Thanks for all the inputs and good wishes.

Billye