Then just over 3 years ago, nearly four now even, I began to have other symptoms, the pain was different and I feared it was just the fm getting worse, changing in some way...
I went at last to the doctor, as I knew something was different, and the pain is so much worse, I knew I couldn't carry on like I was, also there was the erratic heart problems and high bp.
So I was diagnosed with Spinal nerve root cysts... This is also a chronic pain problem, also something that effects so much of ones body... A Letter to family and friends on the site explains how it feels, and so much of it is very similar to fm also, [apart from painful pressure points, brain activity whilst sleeping and a million other things!!!!]
So below.... This is me folks! However I might look, however the smile on my face, my laughter, the me that's got me through since 1989 with the fm, and now this, on top of it all.... But I am still bloody minded, stubborn, strong minded and determined to carry on, and continue to carry on, until I really cannot carry on any more!
Dear Family and Friends,
This letter was written in hopes of improved understanding of those who live with symptomatic Tarlov cysts and the chronic pain, nerve damage, and life altering changes they can cause.
Having cysts on my spinal nerve roots and the resulting nerve damage causes chronic pain and means many things in my life change, and a lot of them are invisible. Most people do not understand about relentless, intractable pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me and my medical diagnosis.
Please understand that living with this medical condition doesn't mean that I am not still trying to live a "normal" life. However, I spend most of my days and nights in considerable pain and exhaustion; sometimes I probably don't seem like much fun to be with, but I'm still me…….. stuck inside this changed body. There are things that I can no longer do, and I have had to accept that. I worry about how the changes in me are affecting you. I care very much about my family and my friends, and I'd still like to hear you talk about your life, your family, and your activities. I like to talk about things other than me and my medical condition and pain. I still have the same interests I have always had; there are just some of them I can no longer actively pursue. I am grateful, by the way, for the things I can still do.
Please understand the difference between "happy" and "healthy". When you have the flu, you probably feel miserable with it, but in a week or two you are back to normal. I've been living with this diagnosis and its symptoms for years; I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in pain, or not extremely fatigued, or that I'm "getting better". Please don't say, "Oh, you're sounding good!" or "But, you look so good", as if nothing could possibly be wrong. When I am around you and others, I try to smile, laugh, and enjoy being with you. I am merely coping. I am happy to be with my friends and family and trying to look normal and act normal; it does not mean that I am not in pain or that I have had a miraculous recovery.
Please understand that being able to sit, stand , walk, or be sociable for 15 minutes doesn't necessarily mean that I can sit, stand , walk, or be sociable for thirty minutes, or an hour. Just because I managed to sit, stand , walk for thirty minutes at a time yesterday doesn't mean that I can do the same today. With this medical condition, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up, and how painful the day will become; in most cases, I never know from hour to hour. That is one of the hardest and most frustrating components of living with Tarlov cysts and chronic pain. It sure makes planning ahead difficult, and it means I have had to adapt to an altered life style.
Please understand that chronic pain is variable. It's quite possible that one day I am able to take a walk, go out to lunch with you, go shopping , although when I get home or the next day I'll have trouble walking to the next room. Please don't be confused by saying or thinking, "But, you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to remember how very lucky you are to be physically able to do the things that you can do. I have to re-prioritize my plans and activities constantly, because of the pain and other symptoms that persist. I am still learning each day to cope with what I can no longer do, and to remain very thankful for what I can do.
Please understand that "getting out and doing things" does not always or necessarily make me feel better, and can often make me seriously worse. I really try to be as active and involved in activities as I possibly can, as far as the pain and symptoms allow. If I was capable of doing something that would take it away all of the time, don't you know that I would?
Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more symptoms and an increase in physical pain. The recovery time from doing something I should not do, or longer than I should do it, is significant. I call it ODI (overdoing it) and I pay for it dearly .You can't always read the pain on my face or in my body language. The pain is not caused by depression. The sadness and sometimes irritability that you might hear in my voice (even though I try hard to hide it) is from the pain and adjustments I have had to make in my life to go on, and it is due to the changes such as the loss of my job/career, my inability to jump in the car whenever I want to run errands, see a movie, go to a restaurant, visit friends, shop, clean my house, work in my garden, etc. as I did previously.
Please understand that if I say I have to sit down or lie down now, that probably means that I have to do it right now; it can't be put off or forgotten just because I'm somewhere else, or am in the middle of doing something..
Chronic pain does not forgive, nor does it wait for anyone.
You may have wondered why I don't just take something stronger for the pain. I have tried many different medications, as well as surgery which did not result in improvement for me, although it has for many patients. I have developed many more cysts since my surgery. I have been made worse, not better, due to side effects or allergic reactions from the medications. These symptomatic cysts on the spinal cord nerves are rare, and are not related to more commonly understood problems, such as herniated or ruptured discs. Currently, there is only a handful of courageous Neurosurgeons and Interventional Neuroradiologists in the world who are seeing the majority of patients with this rare disorder and are willing to attempt treatment. Currently, the treatment outcomes are not indicating a high percentage of "complete cures"; however many patients are much improved.
If I seem touchy, irritable, or distant occasionally, it ¡s probably because I am. It's not how I try to be. As a matter of fact, I try very hard to look and act normal. I hope you will try to understand. I have been, and am still, going through a lot of change. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and to live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you. I need you to call or visit me when I cannot go out. If you live with me, sometimes I need you to help me with the shopping, cooking, cleaning, gardening. You know me well enough to know it is very difficult for me to ask for help.You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss so much. I know that I have asked for a lot of understanding from you, and I do thank you for listening to my innermost thoughts on paper. It really does mean a lot to me that you care. My head and heart are still the same; it is my body that has changed, and my life as I knew it before Tarlov cysts has changed. Thank you for trying to understand what I myself do not completely understand. I appreciate your love, concern and prayers. This new journey of learning to live with this medical condition has blessed me in many ways.
The Tarlov Cyst Disease Foundation's vision is of a future in which Tarlov Cyst Disease is well understood, accurately diagnosed, and easily treated, so that those afflicted should not suffer needlessly. We hope to make the path a little easier for others with this rare diagnosis; we hope our efforts will bring about a cure in the future.Reta Honey Hiers, R.N., C., President
Well, there it is, the high-lighted bit is all me really, the bit about the operations etc, who knows yet, lets hope what they decide to do here to help me works, because by the sound of it, the other option doesn't sound too good does it!
Now I have depressed you all, go get a glass of wine or a beer eh!