I am so exhausted of dealing with this, it is getting to be too much.

[verwon]

Augh! My pain levels are just ridiculous, nothing really controls it anymore. I take my meds, but the best I can hope for is a little bit of alleviation. Nothing gets rid of it all anymore, or really eases it much. I sleep a lot because of the meds, but I sleep horribly, I added Glucosamine and Chondroitin, that helps a little bit but not much.

I am just so frustrated and upset. Does anyone have any other suggestions that might help?

I have tried back rubs, supportive pillows, heated pillows, heating pads, Ultram, Vioxx, Celebrex, Ibuprofen, Acetaminophen, Oxycontin, Morphine, Oxycodone, the Glucosamine and Chondroitin, hot soaks, etc.

Nothing seems to help much and if something does help a little, it doesn't alst for long. This is just so very frustrating for me, I can barely even take care of my house anymore.

Sorry for that rant, I just needed to get it out of my system.

Verwon, sorry to hear you are in such pain. Have you tried Neurontin yet? It really worked for me when I was having leg pains. It is so hard to keep up with daily things when you are in chronic pain. I surely hope you feel better soon.

[tlspiegel]

Ver, I'm so sorry. I wish there was something I could say that would magically take your suffering away forever.

I had chronic severe debilitating pain for over 20 years from a car accident - I was in the back seat of a cab and we were broadsided by a truck. I miscarried, and tore a muscle in my left upper back that never healed properly. What I finally had to do was get my doctor to refer me to a Pain Management Center. It helped and the pain has never come back.

One thing I was told is a limited amount of moist heat is good - in fact great. Too much heat is not good and will exacerbate the pain over time.
I also decided to invest in a good firm mattress. Back rubs helped tremendously. ROM helped a huge amount.

[hattielee]

I would highly recommend finding a doctor or clinic that specializes in chronic pain. My father had debilitating daily migraines.They were so bad he wanted to die. He has been helped tremendously by a pain specialist. He had gone to many other doctors, neurologist, many meds etc.. nothing helped. My father actually has had days with no headaches for the first time in 10 years. One thing the pain specialist found out was that some of the meds my dad was taking were actually contributing to his pain. I hope you can find someone in your area who can give you releif.

P.S. You said Glucosamine/Chondoritin has helped somewhat. I heard that the only brands that have more than 25% of the ingredient on the label in the pill are Triple Flex, Osteo bi-flex, and Cosamin DS.

[mayfly]

aww sweetie (((((((((((gentle hugs)))))))))))))))))

I am so sorry. I know I can't fix this, but I wish I could.

Some people say never, but I'm a firm believer in acupuncture. It's been around for thousands of years so there must be something to it. Many times I've gone in for various pains, some really bad, and I always found relief with acupuncture treatments.

I hope something will help you very soon because living in pain is not good.

[Brittwoman]

Ver I wish you lived closer to me here in NY. We have 2 great pain specialist at the hospital that I work in. Have you ever considered having a pain pump installed directly into your spine? The intrathecal pumps are wonderful!! I've seen people who could barely function then after having the pump installed start to lead normal lives again. Sending you VERY gentle hugs!

Jane

[YorkieLover]

I don't remember what is causing your pain, but my DH has a bad back and while he was going to a good acupuncturist, he did get considerable pain relief. He probably should go back. You might start asking around - friends and family - maybe someone you know has a great acupuncture doctor. A friend gets some help from a pain management clinic. There is nothing worse than constant pain, so I hope you can get some relief soon.

[verwon]

Okay, I am not sure if the site crashed or if it was just a problem with my ISP yesterday, but I couldn't get onto DOD all day yesterday until very late last night, so sorry I didn't respond yesterday.

I will cover any info and questions as I go down the line of posts, then you can all respond with any additional advice. And I really appreciate everyone popping in here with commiseration and advice. It means a lot to me.

Okay, mb, yes, I tried Neurontin, for a very, very brief period, it helped a little, then it did nothing, just stopped working for me, even when we upped my dose. My doc even tried adding Cymbalta and it didn't do anything either, so I eventually stopped taking both of them altogether. Hate to take so many pills for nothing.

To Toby, Hattie, and Britt who mentioned pain management, well my doc did suggest that, and I was all het up to try it, only to discover at my first appointment that the nearest office to me, and one of the very few in our area, no longer treats chronic pain. They only do after surgery injections of various steroids and stuff. I ended up leaving the office in tears and having to head back to my regular doctor for relief. The only other offices we could find are too far away from me, and travel and I don't agree, especially since I don't drive, never had my license and Andy is in school, so he can't take me anywhere that far away on a regular basis, either.

Toby, we did recently get a really good mattress, the one we had was a cheap-o and while it was good for about a year, it very quickly died and when I woke up from sleeping on it, I could barely stand in the morning. It was also made worse because the metal frame they gave us with it was messed up and wouldn't stay latched together in the middle, and since it was a king size, the box springs were seperate pieces and they would start sagging to the floor. So then we tried just putting it on the floor, without the frame, but then it was way to firm for me, with no give and I felt like I was sleeping on a rock. This was shortly after we moved here, and we were really broke, so I ended up having to get financing to get a new bed. LOL! It is a nice one and guaranteed for 10 years, we got a semi-firm Sealy Posteurpedic, and it has worked wonders for my comfort in it and when I wake up from sleeping in it as well as my quality of sleep, when I sleep. LOL!

For heat, I have one of those thermal pillows with the rice and herbs in it, that you sprinkle with water and warm in the microwave or can chill in the freezer. I use it sometimes, especially on the pinched nerve area and it does help, but just not all the time.

Hattie, I did talk to my doc about those supplements and she said the same thing, but the one I bought is actually a good one, the Nature Made Triple Flex.

Britt and mayfly, thanks for the hugs, especially gentle ones as this is all from a spinal condition. mayfly, I really appreciate that, and I wish someone could fix it for me, that would be a dream come true.

Daiquiri and Yorkie, as to the acupuncture, I haven't really been able to get my head around accepting that, it really terrifies me for some reason and my insurance won't cover anything they don't consider "conventional" medical treatments anyway.

Britt, as to the pain pump, the prefer to save those, around here at least, until we have exhausted all other options, since meds are still helping me somewhat, and there are more we haven't tried, they won't let me use it yet. Also, since my problems is spinal, they aren't sure if I will be able to use one at all.

[verwon]

Yes Daiquiri, I have mentioned my problem before here in posts, but not in any detail, so I will cover a little more now, maybe it will help someone provide some more advice or be able to give me some more suggestions and helpful ideas.

Now, as to my condition. To make a long story short, they found a severe form of scoliosis when I was a child, but due to growing up in abject poverty and only having state medical coverage, which most docs in Pa. didn't accept back then in 1981, I was experimented on, without my dad's or my knowledge, instead of being given the proper surgery. By the time I found all this out, it was too late and my options were very limited.

However, as a young adult, I didn't have any severe problems, an occasional backache, and migraines, which they found were causes by the spinal curvature, thought regular migraine meds don't work, this was easily solved with high doses of Ibuprofen, so I didn't give it another thought. Most people didn't even know I had a back problem, unless I sat a certain way and they could see the slight hump in my left shoulder. As a typical young person would, I just went on with my life, working, lifting whatever, did a year at college until another illness that required surgery made me drop out so I couldn't finish. Got married, had a child and etc.

Meanwhile, since I don't drive, I was always walking everywhere when Andy didn't feel up to going somewhere, or couldn't drive me. I mean everywhere, the library, the grocery store and etc. I was always a big walker, even when I lived by myself and worked in Pittsburgh, I would walk for miles, carrying my work supplies in a bag on my shoulder, and of course last carrying home baby supplies, stacks of books, household supplies and etc. Never gave it a thought, until I started to get pain that was slowly getting worse and worse.

I hid it for awhile, a lot of you already know about the depression and problems that andywon has suffered, I didn't want to give him more to worry about, but it was just getting increasingly worse, so eventually he caught on. When you live with someone every day and are together almost 24/7 you can only hide something for so long, no matter how hard you try. As a matter of fact, I shudder really to think what first crossed his mind when he realized I was hiding something, until he finally discovered it was pain and nothing more evil than that.

He finally nagged me into going to the doctor, and trust me, I wasn't very willing at first, I mean, it only resulted in bad things, or no results at all when I was younger.

The doc understood why I was having pain right away, unlike some who try to claim the scoliosis isn't painful, my doctor is more educated on modern medicine than that and no one in that office could figure out why it wouldn't hurt, I mean if you spine isn't shaped the way it should be, eventual pain seems inevitable. Though we have since discovered that it is one of those funny conditions for some people, some people never have an ache from it, and other have severe problems, like me.

They sent me to a scoiliosis specialist in Pittsburgh a few years ago, he is one of the top ranking Ortho's in the country. (Dr.Timothy Ward at UPMC) He poopooed my pain at first as well, until he walked in with the x-rays, which he was so astounded by, that he had to show Andy and I, what was on them. I had never seen any of my tests, bone scans or MRI results either before, so I was curious as well. Well it turns out I have a full S curve, 57 degrees towards the left at the top, then there is this huge gap in the verterbra in the middle where the curve changes direction and it goes back 45 degrees towards the right at the bottom. The gap causes the other verterbrae to crush together and herniate at will and has also caused a permanently pinched sacral nerve.

He also explained that I had the option of surgery, but it would only be a cosmetic fix, now, this type of surgery, for only cosmetic reasons, makes no sense at all. To straighten my spine as an adult, they would have to fuse from the 3rd verterbrae all the way down into my tailbone. This would require regular trips every two to three months for about 2 years, while they harvest bone pieces from my hips as they replenish themselves so they have something to work with to do the fusion, then 6 to 7 months in the hospital bedridden after the surgery to let the fusion set, then another year in bed at home before they would even let me start physical therapy, plus the risks just weren't worth it, since he freely said it would not stop pain, just cause different types and it wouldn't enable me to work. I am not worried enough about a slight hump to go through that.

They are not sure what caused my curve to begin with, most curves when people are born with them also have a corkscrew type twist to the verterbrae that causes pressure on the internal organs that makes surgery mandatory or it could kill them, I don't have that. So they aren't sure if I was just born with a rare form, of if it happened when I was a baby and fell off the bed onto an unfinished cement floor. It is good news that I don't have the corkscrew curve, since I don't have to worry about it endangering my vital organs, but that is a small comfort at best.

I even had one ortho they sent me to, who flipped one me as if it was my fault that I didn't get the proper treatment when I was a child and it was first discovered, as if I had any control over things back then. I didn't even know what scoliosis was, geez. Never went to him again.

Thanks to the internet, I have discovered and spoke with many young women around my age (35 give or take a year or so) who were also experimented on back then and suffering now, just like I am. I can't work, because I can't stand or sit for any prolonged period of time due to the pain and possibility of doing further permanent damage to myself.

As time passes, my condition deteriorates further so the pain gets worse and I can do less and less.

I have tried the gamut of meds, started with Ultram, then Vioxx, Celebrex, Darvocet, Neurontin, Cymbalta, Oxycontin, not I have moved to Morphine, two times a day, two pills a 60mg and a 15mg, so I can use according to how bad my pain is, and an instant release Oxycodone 5mg for breakthrough pain.

My curve has precluded being able to do physical therapies, we can't find anyone trained in dealing with scoliosis, what they would normally do to put your spine back in place and alleviate your pain, could only make mine worse.

This creates another dilemma to whether or not I could ever even safely try Accupuncture. The normal spots they place the needles for pain relief could do serious damage to me, since my spine throws off the location of some of my nerves, blood vessels and etc. My heart is even over an inch further towards the left than a normal person's is located.

So there are barriers to some treatment options. The reason the meds don't alleviate all my pain is because of the pinched nerve and other nerves that are constantly aggravate because the pressure on them is never releived.

So, Andy and I are both very frustrated. Some days are better than others, but I am never pain free anymore. I have trouble taking care of the house, I just can't keep up with things, my pain is such a block to cleaning and etc. Very frustrating for me, as I am sure you all can understand. Anything that interferes with your normal life is very annoying and I am also faced with knowing that mine will never get back to "normal" again.

On top of all this, I have SSI repeatedly turning me down, claiming I can do "sedentary" work, but I have yet to find an employer, other than the occasional online freelance work, who will work within all my restrictions, they don't like it if you can only work 10 or so minutes then need to go lay down or take a nap, or get up from your desk and walk away for awhile because you in so much pain you can't sit there. Or if you meds make you sick and you can't hold anything done and do any work for a few days in a row. Not to mention the sleepiness and side-effects whenever you change a dosage or switch meds.

I also, recently discovered something the nurse at my docs office omitted mentioning when she gave me my last MRI test results, she only mentioned a "slightly bulging" disc, which was putting that nicely, she forgot to tell me about the degenerative disc disease I have in the lower lumbar area of my spine. Which also creates barriers, even if I would have wanted to try certain therapies or the fusion surgery, with crumbling discs, they have nothing to fuse too, so that option has disappeared as well and I am left with pain management. Lucky for me, a new doctor, who specializes in treating chronic pain and has taken courses for this, has now joined my docs practice. So since the other pain clinic near me was a no go, they are putting me under his care so he can hopefully help me more.

However, I still have issues we have to work within, since we are living on Andy's SSDI while he is in school, I am only covered, once again, by state medical and they have severe restrictions on the meds they will cover for me to use. They will no longer cover Oxycontins or any dosage, and they will only cover up to 5mgs of Oxy IR for breakthrough pain, and they will only go up to certain dosages of Morphine as well.

Anyway, sorry this is so long, but I thought it would give you guys a better understanding of what I am going through.

[galena]

Wow, that's quite a saga. I would have suggested some kind of daily exercise (tai chi, etc.) but it sounds like that's not possible for now.

Sorry you're so miserable, and hope that you find some relief soon.

[tlspiegel]

It is quite a long haul Ver. I'm praying for a solution to the pain and quick healing.

They told I'd be in pain for the rest of my life from the accident due to the muscle tear never healing correctly and subsequent muscle spasms.

"They" were wrong!

[YorkieLover]

Oh boy, Ver ... I had no idea how serious your situation is. I feel so badly for you. Today I am having back problems - don't know why - this hardly ever happens to me ... but it makes me more sympathetic ... and I know this is nothing compared to what you deal with everyday.

I am so in wonder how you even come across so nicely on the boards! Pain can do terrible things to your life and outlook on life. I don't know how you stay so nice ... but we appreciate it!

[verwon]

Yeah Galena, other than walking, swimming, and an occasional slow bike ride, the docs are really reluctant to suggest many exercises as there is now way of knowing what will do damage and what won't. Thank you for they sympathy and well wishes. I have to admit, the last time my one friend was here and complained about her back ache, I told her I would gladly trade her, even for one day, it totally changed the way she thought about it.

Toby, I have accepted the fact that I will probably never be totally pain free, but I would just like to get it to a level where it stays there, not constantly fluctuating, and I can function to take care of my family. Thank you for your prayers Toby, I really appreciate your caring and concern.

Thanks for the compliments Yorkie, it is not easy to maintain my control and temper all the time when I am frustrated, but usually when I hit that point, I go crawl in bed for awhile. LOL! Cuddle up with a purring brat and ignore the world for awhile. Usually the safest place to be. I hope yours quits acting up soon.

Tears came to my eyes as I read your horrible ordeal over all these years. I can't even begin to imagine what misery you are having day-after-day because the pain I've had seems so minimal now. Fortunately I have found a way to get relief, and you will be in my prayers so that will happen for you also, and very soon. Every day something 'new' is discovered and I try to have an optimistic attitude for everyone.