What is Arachnoiditis?
If you are just browsing and have run across this story then I promise you that you are about to learn something. If you got here by doing a search on "arachnoiditis," then you might already know what I am going to write about. First, let me tell you that I am not a doctor. I have no medical degrees. I am writing this from the vantage point of a person who hasarachnoiditis. I am not an expert, only someone who has been battling this disease for nearly 14 years. And believe me it is a battle. Secondly, arachnoiditis has nothing to do with a fear of spiders, or anything spider related at all. Arachnoiditis is a spinal disease that not many people know about it. It is my hope that by writing about it here I will draw some attention to this horrid disease and maybe even start a diagolue that can lead to education. Education about this disease is very important. The more people are made aware of it's existence the less likely they are to ever get it. This disease is given to people, in all cases, by the medical profession. There is no gene that causes arachnoiditis, there is no condition that a person can inherit, nor is it possible to get it from another person. As I said, this disease is caused completely and totally by the medical profession and in most cases could be avoided by the simple courtesy of informed consent. To find a wealth of knowledge about this disease, please check out http://health.groups.yahoo.com/group/ARACH_FRIENDS/ Here, you will learn all you ever wanted to know about this horrid disease.
If you have read this far, I figure it is either because you have the disease, think you might have it or know someone who does. If you have it or think you do, my heart goes out to you. My best advice to you is to find a support group (such as the one I gave you the link for) and join it right away. You can battle this disease alone, but there is no reason to. Arachnoiditis is not an easy disease to understand, therefore among those who have it, many friends have been lost. Some have even lost their families because of the lack of understanding. Many people think that the person suffering is "faking" because this is not only a disease that you cannot see, but because the symptoms are so many and so varied, quite often you will experience one symptom one day and the next day something totally diffeent will appear. It's because of this reason that many people this we are making it up. I have had so many doctors tell me that it was all in my head. Before I found a support group I was so frustrated because I felt that I was all alone, no one understood. I'll never forget when I found that first support group online. I literally sat at my computer and cried. I finally had validation! There were others who were having the same symptoms that I was, the same pain that I was experiencing, others had as well! I learned then that validation was so very important. And the fist time that I was able to actually talk to another person who had arachnoiditis gave me so much strength. In the last 12 years I have not felt like I was battling this disease alone one time. But those first two years, before I found that support group were so hard on me. It felt impossible for me to make anyone understand exactly what I was going through. I had a two year old when my arachnoiditis was diagnosed. The first sentence this child put together was, "Mommy, does you legs hurt?" Until I found this support group, there was no one in my circle of friends and family who understood just how hard this was for me. For my child to know that the way Mommy's legs felt was going to determine whether or not he was going to get to go play outside was devistating for me. It was such a huge relief to find people who understood that. So, please, it is very important that you get yourself into a support group.
Another good piece of advice I want to give you is DO NOT push yourself.There will be some days that you feel like walking is a chore and there will be other days where you might wonder where the disease went. Let your body tell you how to act. If you feel like doing something, by all means, DO IT. But if you don't feel like walking, then stay in bed.
There will be people in your life that will be incapable of understanding this disease and you need to understand that this is okay. There will be others in your life that will do the very best that they can. They will never mind listening to you complain, they will never-EVER think that you are making your pain up or making it worse than it is. Keep these people close to you. But once you find that support group and get comfortable, let your friends stay your friends and use the support group for complaining. Remember, you are going to have this disease for the rest of your life, but it does not have to control you or every part of your life. Yes, there will be times when you will have to plan things around your disease. For instance, for me, mornings, right after I get up, are my worst times. I am stiff and sore from sleeping all night (when I do sleep) and it usually takes several hours after I have taken that first dose of pain medicine for it to kick in and for me to become limber enough to move around, so I try very hard to not plan anyhting for early monring. When there is something that I know I will hae to do early, I try to make sure that I am up several hours before I have to leave home so that my body will have that time it needs to absorb the pain meds so that i can get moving. You can learn to live in relative comfort with arachnoiditis but it takes planning and it takes practice. And the longer you live with it the better able you will become at managing it.
The saddest part of arachnoiditis, to me, is that it's not like so many other spinal diseases or injuries. There is no national spokesperson for arachnoiditis. We have no Michael J. Fox, like Parkenson's Disease does. There's no Elizabeth Taylor or Elton John pushing for education and a cure like AIDS has. And unless and until that happens, arachnoiditis will remain a little known about disease. There are thousands and thousands of people suffering daily with this disease...but because we do not have national exposure, because we have no way to educate the masses, we have no way of stopping this nightmare. I honestly believe that if we were able to educate that in time we could eradacate this disease. Doctors, on the whole, don't know a lot about arachnoiditis and the ones that do, don't want to talk about it mainly because it is a disease that is caused by the medical profession. I am willing to bet that in about 99% of the people who have arachnoiditis got it because a doctor gave it to them. I also personally believe that if doctors would disclose the fact that it is not only possible, but probable that a myelogram will cause arachnoiditis, many patients would say no to the myelogram that the doctor insists he has to have. Informed consent is probably my largest pet peeve about arachnoiditis. That and the lack of public awareness. So I am hoping that through this site I am able to bring some awareness. If one person learns, if one person is able to get help, then my work is worth it.