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Posted 3/23/2009 1:58 PM (GMT 0)
This is the first time that I am writing a post that isn't a reply to what someone else has written, but I need some encouragement today. I have been struggling with CP for 13 1/2 years due to car accident, and my pain is normally an 8 - 9 every day. Once in while I will get blessed with a 7, but that is rare, and a couple of days out of the month I hit a 10 which is where I have been for about a week now.

I don't have the strength today to get to detailed, but my pain starts in my low back and radiates down both legs, and radiates up my back as well. I travel 2 1/2 hours each way to see my PMS, and we have exhausted every form of treatment available. I currently have an intrathecal pump that gives me 18 mg of dilaudid and 13.5 mg of bupbivicaine per day into my spinal canal. In addition I take 60 mg of roxicodone 5x's a day, 20 mg of flexiril 3x's a day, and Klonipin 1mg 2x's a day.

I also have a spinal cord stimulator, which needs a battery replacement so it is not working as it should right now, which even when working at full capacity only gives minimal relief. I am scheduled for surgery to replace the battery next week.

Anyway, as I said, my pain level has been at a 10 for about a week now and I feel like I am reaching the end of my rope. My husband and my kids try to be as supportive as they can, but they too just don't know what to do or say anymore so they pretty much just to ignore it, and I try very hard not to burden them with it, but today I am really in a bad way.

Usually when it gets this bad, I wind up getting admitted to the hospital for a few days, and that may happen by the end of the day, but I am trying not to go that route because it is such a drain on my whole family. So, I am just desperate for some encouraging words.

Thank you in advance,

Bluejet2

Post Edited By Moderator (Lynnwood) : 3/25/2009 2:02:05 PM (GMT-6)

Posted 3/23/2009 2:21 PM (GMT 0)
bluejet2

I am sorry to hear your having such a difficult time of it today, I wish I could say something that would make you feel better and make your pain go away. But I know that isn't possible! But I do hope that your pain eases up, and I will say  prayer or two in hopes that it will help you at least a little! I do wish you well!

Good Luck to You

White Beard

Posted 3/23/2009 2:33 PM (GMT 0)

Bluejet,

When I am like you are, just knowing someone cares helps....so I'm sending you some GENTLE, sunny, warm hugs from sunny, warm beautiful Phoenix, AZ.

((((((((((((((((((((((((((((((((((((bluejet)))))))))))))))))))))))))))))))))))

XXOO
Patti

Posted 3/23/2009 2:42 PM (GMT 0)
bluejet2, we have all had those 10 days and it is no fun and is extremely draining. We all wish we could help take the pain away in a time like this with the hope that someone will take the pain away when we are there. We care and want to send you our prayers and thoughts as you continue this road of pain. Be blessed!

Posted 3/23/2009 4:07 PM (GMT 0)
Sorry you are feeling so bad. I know what you feel like with the pain and feeling like a burden. Just remember to breathe and take it minute by minute if you have to, that's what I have to do myself. I hope you get some relief very soon w/o having to go to the hospital because that's never very much fun either. You are in my thoughts and prayers!
Posted 3/23/2009 4:46 PM (GMT 0)
Hi Bluejet!

I too am so sorry for your misery. One thing you might try is a pain counselor. Yep, they actually exist. This way you would have someone who can truly understand what you are going through and give you some tips and ideas on how to handle this better. They can also give you ideas for techniques to help reduce the pain or the ability to tolerate it better. When you get so run down the pain just ravages your body and it's so much worse. I think all of us can understand that part of what you are going through. Exhaustion and a feeling of defeat can be our worst enemy. A pain counselor can help with these things.

Keep us posted, ok??
Chutzie
Posted 3/23/2009 5:02 PM (GMT 0)
Bluejet,,
I certainly understand those bad days, and with your battery low this seems like it's more than just a day or two. I don't know if going into the hospital is the best choice for you, but pain ravages the body so! Is there any other medication your doctor might be able to give you until your get the battery changed next week? I'm not sure...maybe others who have a stim implant can add more.

A week is a long time to wait, though, so if it comes down to it maybe the hospital is the best choice among a very limited set of options.

Sending healing, soothing thoughts your way. I wish I could help more.

PaLady
Posted 3/23/2009 6:47 PM (GMT 0)
Thank you all for the kind words and support! I really do need it today. My kids will be home from school in a few minutes, so I'm trying to put my brave face on but all I can seem to do today is cry.

Bluejet2
Posted 3/23/2009 8:31 PM (GMT 0)
Oh Bluejet...You have been through so much....and you have both a Pain Pump and a Stimulator? That must be confusing... I know that it seems like the world is crashing down on you, but we are here to help you carry the load. Trust me when I tell you that no matter what is going on in your life, we (fellow CPer's) have either been through it, are going through it, or will go through it. And you don't have to try and hold it together for our sakes. Let it go, Vent, yell, tell us all about it and you will feel much better...and you might even get some good advice along the way...

Me.
Posted 3/24/2009 2:11 AM (GMT 0)
Bluejet,

I'm so sorry that you are having such a rough time lately! I wish there was something I could do to help take your pain away! I always feel so helpless, both when I am in pain & when I see other's in pain. I hate to know that someone or something is suffering! But all I can do is offer you my support & friendship. Sending you healing vibes, prayers, and of course, hugs! I know how hard these kinds of days can be. Unfortunately we all do! It may seem impossible right now, but you WILL get through this! We're here for you! Lean on us & vent to us all you want. We're all rooting for you!
((((((((((((((((bluejet)))))))))))))))))))).

More hugs,
Skeye
Posted 3/24/2009 2:42 AM (GMT 0)
Hi Blue,

Oh, I do hate to hear you are having such a rough time, your pain is really out of control. What the chance for an increase in the pump? i have a pump too, just recently started with a new dr that specializes in pumps. She is a retired neurosurgeon, only see's pump patients. She has over a decade of experience with them and is just totally awesome. In the short time I have been her patient she has really turned my world around.

I do have a couple of questions for you. I know you said you get 18mgs of Dilaudid, however, what is your conentration doseage. Mine was increased from 20mg to 37.5 mg and I cannot for the life of me right now remember the doseage I get in 24 hrs. My former PM dr had me on a very low dose, period. Thats why my pain did not make any great strides. I too have Bupivicanine in my pump, former dr had me at 15mg, new dr nearly had a cow. She reduced my dose to 7.3 and never goes over that doseage. The reason being since its a medication used for epidurals when giving birth and such it is suppose to numb your legs so you feel no pain. Well, in pump patients doseages like what you & I were on is causing all kinds of leg pain and leg & foot problems for patients with a pump. I was having alot of burning on the bottom of right foot, which usually is caused by a pinched nerve, well guess what, after she reduced the doseage, that pain went away and has not come back. I also have Clonodine and Sufentanyl in my pump. How long have you been on these meds? It really sounds like you need maybe your concentration dose increased and some other meds added to the mix. By increasing your concentration doseage alot of times, the 24 hr doseage can be reuced believe it or not. My dr told me the other day that I am still at a very low dose and have a very way to and plenty of leeway for increases. She has one patient on 60mg in 24 hrs, now thats a whooper, one with 7 different kinds of medications. She does all of her own mixing and compounding which is a rarity.

I sure hope somehow, you can get some form of relief going and get that pain level down. Hugs Susie

Post Edited By Moderator (Lynnwood) : 3/25/2009 2:04:11 PM (GMT-6)

Posted 3/24/2009 9:54 PM (GMT 0)
Thanks again everyone, I can't begin to tell you how much I appreciate your support - I have been reading your posts over and over again to help me get through this bad time I'm having.

Susie - my concentration is 20 mg per ML, and unfortunately my Pain Mgmnt. doctor has been unwilling to give me an increase for quite some time. He keeps saying that I am already on a
hefty dose and that there is only so far he can go and since I hopefully have quite a few years ahead of me (I'm 40 years old), he wants to leave it where it is. I have been told by the nurses
that come to my home that they have patients on double the dose that I am on, but because of my long-term relationship with this doctor - I've been seeing him for over 10 years - and the
unavailability of PM's in my area (I travel 2 1/2 hours one way to see this guy), I am kind of stuck.

I really do like this doctor, he has been wonderful to me, because I occasionally have to be admitted to the hospital for pain control, he has gone so far as to give me his personal pager #, as
well as his home telephone # so that ER doctors can get a hold of him to validate my history and advise them on how to treat my pain. Unfortunately, most of the doctors around me have never
treated a patient with an intrathecal pump (some don't even know what it is), and they don't want to take the time to call him, so I get substandard care. He has on more than one occasion
called doctors who he felt were negligent in the way they were treating me and given them he**.

I have been trying to get him to agree to let me try a feature available for my pump where I would have a device that I would place over the implanted pump and give myself "bolises" when
needed. It works much like a PCA machine that you are usually hooked up to after surgery, but for some reason he thinks it is a very dangerous idea. I don't understand this because he
would decide how often I could give myself the bolis and the dosage I would get and it would be programmed into the pump. Right now, Medtronics (which is the manufacturer of the kind of
pump I have) have halted distribution of these devices while they make revisions to it, but when it is made available again, my nurse is going to put together some information to submit to him
which will include stats on patients she sees who already have it and he has promised to consider it.

Can I ask you where your doctor is located? I live in upstate NY, and believe it or not we do not have true pain management doctors around here. We have chiropractors and physiatrists and even
a psychiatrist who call themselves pain management doctors, but they are a joke. They've never prescribed anything stronger than percocette and are terrified to even do that. I could travel to New
York City, it would be about the same distance as going to Morristown, NJ where I go now, but it would be much more costly (tolls, parking, etc), which I truly can not afford. They would make me
come and see them every 30 days (it is mandated by law, but because my doctor is located in New Jersey and I live in New York, I am not bound by NJ law and my doc is not mandated by NY law,
therefore, he only makes me come and see him every 3 mo. because the trip is so difficult for me, as long as everything is status quo. If I need him sooner, he has always made himself available
to me).

I have asked him about clonodine before, and he dismissed it by saying that he wasn't sure the pump was doing me any good at all, and maybe I should consider having it taken back out, which I
have to say scared me half to death. I don't think that was his intention, but he has told me on more than one occasion that he is not sure if the pumps and spinal cord stimulators really do enough
to make them worthwhile, but even with the amount of pain I suffer with, there is no question in my mind that they are worth it. If I had to go back to just oral meds, I would have no quality of life
whatsoever, and I would not be able to go on.

Soooo, next week can't get here soon enough for me, I am having surgery to replace the battery in my spinal cord stimulator and hopefully (once I recover from the surgical pain), it will take the
edge off so that I can cope with it better.
Posted 3/25/2009 1:30 AM (GMT 0)
BlueJet I am going to start a new thread for you this one is going across the entire page Susie
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