I am new here, looking for a direction. I have been diagnosed with Arnold Chiari Malformation, which is a brain disorder. With this, the brain is sinking into the base of the skull, compressing the nerves as well as the brainstem, causing daily cronic pain.
There are surgeries to relieve the pressure on the nerves, though there is no cure, Chiari is cronic and depending on how long this condition is left untreated, these nerves can be left with permanent damage. I had my 1st surgery on my spinal cord in June but my pain level is unbearable!!
I was given oxycodone after my surgery. I have a big fear of dependancy so I stopped this a week post op. So far, nothing I've been given has really helped anyways so I just suffer.
I've tried lyrica, neurontin and the oxy. And even in the hospital, morphine just takes the edge off but doesn't help too much. So I self medicate by using rest to feel better. When I lay flat, my pain lessens but once up again, it comes back. This is because my brain is blocking the flow of spinal fluid to my brain. But my quality of life is definately not the best.
I am 42 years old with 2 teenagers to help reach adulthood and this is affecting them so much. Because I'm unable to be upright for long, I cant do much with them and that just saddens me to see them lose out on life because they're mom is sick.
But I've been living this way for a long time and today I brought my daughter to our family councelor. She has been wonderful in helping our family deal with all of this. Today I expressed my pain and my suffering to her. She told me that sometimes I think I'm superwoman but its time now to seak out someone for pain management.
I expressed my fear of dependency and she encouraged me by saying that I have enough self awareness not to get caught up in that. Also, I explained that I don't want to be concidered a "drug seeker" by the medical profession. Chiari is something not alot of dr's know about or understand so I fear they'll think I'm just looking for drugs. But I do need help with this and don't know where to start.
I am generally an upbeat person, even concidering my disability. But lately, I spend many days crying, alone and trying to hide my pain from my kids. Funny but yesterday I was crying to myself and thought since no one was with me in the room, I was not being heard. I have a little quaker parakeet who is quite vocal and all of I sudden I realized that he was coping my sounds and crying back to be. LOL Gotta find some humor too!!
So here I am looking for any advice and direction. If I can find a way to manage my pain and have some of my life back, I'd be happy.
Cindy, all of the feelings you are experiencing is normal. I am on pain meds but still suffering and have moments where I want to cry out of frustration but keep it bottle in. Until lately my children can tell I am having a rough day by my body movements and they don't even need for me to tell them. What is so sad is when they walk up to me and ask Mom, do you need a diet dr. pepper, a blanket, or do you need a hug? Then what do you think happens? You are so right, there is no holding back the tears. My point in telling you is that with that darn bird you can't hide anything but your children are smart enough to know when the days are bad. They don't need you to tell them.
If you are at the point of crying, having feelings of guilt over missing things, and experiencing isolation, it is indeed time to seek out help. From the sounds of it, you are suffering depression and denial. All very natural for chronic pain patients to experience. For your sake and your families sake, it is time to get some help from a professional. I would definitely go to a pm doctor and skip the gp thing because this is such a rare disease.
There was another user Roy47, I have not seen a recent post but you might want to do a advanced search on his name. He suffered from this disease and I know he was very alone and frightened of the progression of the disease. Good luck and God Bless.
Cindy, I'm so sorry for your pain. Please know that these boards are a wonderful place to get advice, information and support. We may not always have an answer to a specific question, but we all have a shared understanding of what it is like to live your life, every day, with pain.
Medication is a very personal choice, so I can't honestly tell you what you should do. But I can give you my experience and hopefully another person's perspective might help you decide.
With all opiates/opioids, there is an issue of physical dependence. This is not the same as addiction. People who have an addiction take the meds to get the high and only to get the high. And since this "high" dissipates quickly with the same doses every day, an addict will start taking more and more to achieve the same result. Specifically, more than is prescribed by the doctor.
I guess you have to look at the pros and cons, and decide what gives you the best quality of life. I, like you, am a mother and my daughter was a teenager when my journey with chronic pain began. It was actually a big factor in my decision to go ahead with the meds. They allowed me to be able to be a more present parent, because up to that point, my pain would not allow it.
I have a fantastic PM doctor and I have always been 100% compliant with his prescribed dosing. I would never take the chance of losing my care. Not every aspect of PM involves meds, either. There are usually several other modalities that a PM doc will order/prescribe, depending on each patient's underlying condition. I use several other non-medicinal methods along with my meds to manage my pain.
I'm sure you'll get many more responses. Each person's experience and opinions are different. I hope I've helped a little bit, at least. If you have any specific questions, please don't hesitate to ask. I check in here almost every day. Take care and welcome to the PM/CP boards. Blessings, CMP/MM
Hi Cindy and welcome. Right now my PCP is prescribing my pain meds. I was also very concerned about the dependance issue. She explained to me that I was already taking meds I am physically dependant on - a blood pressure med. She had told me to not stop taking it without talking to her that it would have a bad reaction, but until the pain med issue came up it didn't click for me that it was the same thing. Have you tried any other treatments for your pain? I have a lot of muscle problems and see a massage therapist about every two weeks. Even if you don't have muscle problems it might be worth trying just for the relaxation. There are different types of practioners and different types of massage, she tried something I hadn't had before last week called Reiki. It's very gentle, the touch is very light, some practioners just hold their had over the area. At the very least it's really relaxing both physically and mentally.
Hello and welcome. I'm so sorry to hear about your troubles. As a fellow pain sufferer, I know a little about what you're going through. When your head hurts, everything hurts!
I think Cmpgirl has given you some excellent advice. Every patient must weigh the pros and cons of being medicated. With all due respect, it sounds as if the pros of taking meds would far outweigh the cons. Let me tell you about my experience.....
I suffered from pain very similar to yours, although I have a different condition. For me, I take a heavy LA med and heavy BT meds....I've worked up to where I am...I didn't start overnight @ these amts. Nevertheless, the meds have given a great portion of my life back. Yes, I have dependance issues. Yes, the meds have side effects. Yes, I worried about many of the same things you do. BUT, the positives are so much more.....And GREATER. I have the choice to function via the ability of a liberal batch of meds....I feel like I have the ability to fight this curse and fight back hard.
I would highly encourage you to adequately treat your pain. You have to look @ the glass as half full, and not half empty. You can deal with the issues you are concerned about. Suffering like you are is not just terrible for you, but your children. You don't have to tell anyone your medicated. You can keep much of it, if not all, to yourself....In fact, I would encourage you to do so. If you elect to go this route, we can talk in more detail then.
Please see a PM Doc....You owe it to yourself, and your family.
but your children are smart enough to know when the days are bad. They don't need you to tell them.
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