A Letter to Normals from a Person With Chronic Pain

 Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic 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 before you judge me.

 Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time; I’d still like to hear you talk about yours, too.

 Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick 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 a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, 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. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic pain does to you.

 Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “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. In a similar vein, 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 always remember how very lucky you are, to be physically able to do all of the things that you can do.

 Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do.  Another statement that hurts is, “You just need to push yourself more, try harder”. 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 damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.  If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you 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 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, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. 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 and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

Post CES (Cauda Equina Syndrome)

These are a few suggestion for those suffering from Cauda Equina Syndrome, post op and are recovering from cauda equina syndrome.

  1. Scotch tape on feet can help with nerve pain. For some reason it can block the signals and the vibration type of feelings.
  2. Don’t expect doctors, nurses, or any other health care professional or specialist to know about CES. They just have a vague clue or the textbook version and will not be really helpful in dealing with your suffering. Find someone who is!!
  3. Muscles spasms can be helped with magnesium supplements containing magnesium hydroxypatite, citrate, and oxide. Vitamin Shoppe (www.witaminshoppe.com) sells this version as magnesium complex for women but men can take it as well. Be careful though as too much mag can cause diarrhea.
    1. Quinine (hyland leg cramps, also found at vitamin shoppe) is useful as well as the other drugs your doc might provide. Drinking Tonic Water also can help.
  4. For bowels, senna is good. Taking too much can cause cramping as I found out much to my chargrin. This is available in multiple forms, from pills to tea.
    1. Miralax is also good as it loosens up stuff. Only downside I found when taking it daily is that is can cause watery stools. Some people have found this helpful, others not.
    2. Although the docs might prescribe fiber, it might back fire as it can cause gas with friends. Use with caution. If you are the health conscious type, veggies and bulk foods will work.
    3. Carrot juice as also been helpful for some people with constipation
  5. If you have numb feet, be careful/mindful of walking outside during hot weather as it is very easy to get burns on hot surfaces such as decks and patios. Checking the areas for blisters, scratches, or cuts is also a good habit to get into after walking on the sand on beaches to make sure you didn’t injure yourself. Consequences can be severe infection to ulcers that don’t heal.
  6. For foot or any ulcers that don’t heal, try Manuka honey. It is popular in the UK (United Kingdom) as the treatment for ulcers or wounds that do not heal to traditional treatment.
  7. Foot/leg/ankle nerve pain is common. It is characterized by burning, stabbing, shocks, jabbing, jolting pain that wakes you or prevents you from a sound sleep. Medication for this is trial and error as not everyone reacts the same. Common drugs used to treat this are:

                                                               i.      Gabapentin (neurontin), lyrica (pregablin), lamictal (lamotrigrine)

                                                             ii.      Tegretol (carbamazapine), zonagran (zonisamide), Trileptal (oxcarbazapine)

                                                            iii.      Trycyclic antidepressants such as amitryptaline, nortriptaline

                                                           iv.      Cymbalta (duloxetine)

  1. Bladder problems. Self catherization is common. Having a “bathroom bag” is important for outings and to store trips. These include a change of clothes, underwear, diapers, or other essentials to toilet care, including baby wipes (non alcohol preferred). Use of purell or other antiseptic lotions in the bags can help decrease UTI’s (urinary tract infections)
  2. Bowel problems can be reduced based on diet and a routine. Some people have found it helpful to set a day a side to use as a “bathroom day”, others use the remedies above to make sure they go, though if continent, diapers are available and can be purchased discreetly through the internet, if you are shy like me in purchasing them through Walgreens or CVS. Use of wipes are helpful as not everyone can feel they have gotten everything and helps prevent skid marks.
  3. The embarrassment of an accident cannot be underestimated. It is a loss of dignity that hurts like hell. Write to the group about it helps. Don’t keep it inside. You are not alone with this!!!
  4. Use of any omega 3, flax seed oil, evening primrose oil (for women, helps with menstruation) and other anti oxidants can help decrease inflammation. Found in various health food stores. Does take a while to build up so please be patient!
  5. Alpha liniolec acid (ALA, though not to be confused with the omega 3) can help. Some people take 600-1200 mgs. This can cause your urine to smell like asparagus but increasing water intake helps. These are found in various health food stores. Like for use of the above, does take a while to work. Please be patient!
  6. Yes it is possible to have kids after CES with the right care and that the baby and mother is ok physically. Always consult with a doctor about this, though we provide opinions we are not health care professionals.
  7. Check vitamin D level. Even if ok, should supplement. Vitamin D deficiency has been associated with chronic pain as well as other chronic immune disorders/diseases. Since I have been replenished, I have not had a bout of bronchitis/pneumonia. It takes a while, especially if you are low (<20) to build up your levels, even with prescription strength D. Supplements should be 1000 IUs or higher and taken every day until level is between 40-70 then taken every other day to avoid toxicity (>100 but this happens if taking a LOT of d (>10,000 IU/per day over a period of time). Just my opinion!!!! Most doctors do not know the full benefit of being D deficient versus non-deficient . Research this if you like but it helps to be a normal level than not in the long run!!!
  8. Get support through www.caudaequina.org. It helps knowing you are not alone.

Ankle Chronicles, Part 2

Been 72 hours since the pain in my left ankle started and the swelling has been intense. I have not been able to get the swelling down even a notch despite elevating it and putting ice on it. I have tried to rest but I get so antsy that I have to go downstairs to munch on something or to go to the bathroom. I hate going downstairs more than having to climb up. Going down I have to go one step at a time and because my proprioception (sense of sensing) is off I have to look at where my feet are before taking the next step or risk a fall down the stairs. I’ve been lucky so far as I have been able to catch my balance to avoid a fall but that is because I am holding the banister for dear life while I go down the 15 or so steps, one at a time like a little kid.

I remember I used to make fun of my childhood friend who went down the stairs one at a time, but that was back when we were kids. Now I’m an adult and don’t trust myself to go one foot over the other because my nerves are messed up due to Cauda Equina syndrome. It is a painful nerve condition that is caused most likely by prolapsed or herniated discs that affect the cauda equina (horse’s tail) bundle of nerves. These nerves are what controls all nerve and motor function below the waist. Because I was “lucky” enough to have this happen to me twice in 5 yrs, I am now left with permanent nerve damage in my left ankle/foot/leg, specifically, my peroneous muscles and tendons. These muscle and tendons are what causes my ankle/foot to go out to the left while walking. Because this is not normal walking, the muscle and tendons are constantly being inflamed by me pulling on them. They are not supposed to used while walking but I am forcing them to. Plus because I still have weakness in my ankle that does not help. This weakness when added to fatigue makes me walk worse.

Again the weakness was caused by CES, Cauda Equina Syndrome x 2. You never realize how much you take for walking for granted until it is taken away from you. I used to be able to walk miles without difficulty. Now I am lucky to go three blocks without pain. My life sucks. I hate not being able to walk for exercise or for traveling. Now instead of walking to the train station that is a mile away, I am forced to take a bus. I am grateful that I can get a seat most days and that I don’t have to stand on the bus because that just puts added pressure on my tendons.

Not too many people really care that I walk with an AFO (ankle foot orthotic) brace. Only small children will stare. Most adults won’t even notice. I went to my Aunt’s 90th birthday party a few months ago and though I was wearing my AFO, no one really said anything until I walked toward or away from them. But they are my family and love me anyway.

Because I had worked as a lab assistant, my job could not accommodate my restricted walking so now I am out of work. I am on disability. I feel like a sleeze bag because I can’t work anymore. It kills me to not have anything to do day in and day out. Most days I stay inside because I just don’t have the energy to go out, even if it’s just for a cup of coffee at Starbucks. Lately my time at home has been increased to the point that I might go out just to get a soda. Having to rely on the bus and bus schedules makes you regret having to go out. Sometimes the bus is on time and all is right with the world. Most of the time it is late. And it sucks having to stand and wait for it. Even though I can have a seat on the bus, there is no bench to sit on at most bus stops. And standing is truly what causes my leg pain to flair up. I take medication but only if I’m home. I stopped taking it when going out because it caused me to have dizzy spells and to feel out of it at times. Better to feel out of it at home than while out on the street.

And now it’s the day after I load myself up on meds to control the pain. I usually feel ok after I have a day of meds but sometimes all it talks is to go up and down a flight of stairs to aggravate my damn ankle/nerve injury. The “simple” act of going up and down stairs can be torture for me. People take it for granted until that sprained ankle or hurt knee is involved. Then they realize it is not as simple as one might think it to be.

So that is my chronicle for today. Thank you for reading.

sense of sensing–proprioception


Proprioception (  /ˌprpri.ɵˈsɛpʃən/ pro-pree-osep-shən), from Latin proprius, meaning “one’s own”, “individual” and perception, is the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement.[1] It is distinguished from exteroception, by which one perceives the outside world, and interoception, by which one perceives pain, hunger, etc., and the movement of internal organs. (wkipedia 9-27-12)

We take this for granted until you get hit with Cauda Equina Syndrome.  Cauda equina syndrome is a particularly serious type of nerve root problem that can be caused by a prolapsed disc. This is a rare disorder where the nerves at the very bottom of the spinal cord are pressed on. This syndrome can cause low back pain plus: problems with bowel and bladder function (usually unable to pass urine), numbness in the saddle area (around the anus), and weakness in one or both legs. This syndrome needs urgent treatment to preserve the nerves to the bladder and bowel from becoming permanently damaged. I took a bad fall a few months ago and could not figure out for the life of me why I fell. I was trying to enter a cab and missed it by a foot. I just suddenly dropped with no awareness as to what the hell happened. I almost took another header the other day and realized I was tired and my proprioception was off. Usually I know where my feet are. When I lost this function back in 2001, I always made a mental note of all times of where my feet were so I wouldn’t trip over them. This vanishes when you become fatigued, mentally and physically. Then your feet can cause you trouble. I realized this painfully when I fell and nearly broke my arm and sprained my good ankle, again, when I fell a few months ago. I am sure that most people are saying what the hell is it I am talking about and it is complicated to explain. How can I not know where my feet are? It is because the nerves that tell me where they are has been damaged so I no longer have the sense of where they are. A couple of years ago, while exiting work in the garage, my car would stop and I had no idea what was wrong as I was hitting the “gas”. I looked down and found that my foot was really on the brake. Thank goodness or I would have been speeding around in the garage and god knows what kind of trouble I would have gone into. The few times this has happened was again due to fatigue and less awareness, a type of mindfulness, if I dare use the word, that has dissipated as I become tired.

To lose this ability is frightening. Not knowing where your feet are is a dangerous thing. I thought that after 10+ years I had developed the sense back but my fall can tell you I have compensated for it pretty well, that is until I become fatigued. Lately I have been more fatigued but thankfully I have not had any falls or trips. Sometimes if my leg is really tired, it will drag. I just cannot bring it up to where it should be while I walk. The AFO (ankle foot orthotic) has made things easier for me to get around but it still doesn’t help with the swelling and pain that I experience every day. Today I went to my monthly pain management appt with my primary doc. I asked him what I can do about the swelling other than elevating and icing like I have been doing. He says to wear a light compression stocking to see if that helps. Problem is that they are like $40 a pair and when you have a limited budget, it is difficult to spare that kind of cash. He also just advised to keep doing what I have been doing but to try and lose weight. I was like are you fucking kidding me? I can barely walk most days and you want me to keep moving? I love to walk but I get so damn tired that it is hard to do and with my ankle swelling up on me, I don’t think I can walk more than a few blocks without pain. I have tried. I hurt and then trying to get the pain under control just about kills me afterwards. It takes me at least twenty-four hours to recover and I hate spending time in bed doing nothing but keeping my foot elevated. I am glad I bought this trapezoid sized foam elevator thingy to raise my legs to where they should be. I can get very comfortable in bed now except I cannot sleep on my back. I am a side sleeper so the elevator ends up kicked to the floor or the foot of my bed most nights.

So I had planned on going on a diet anyways. A slimfast diet. Except I can’t keep my appetite controlled. I want to eat food not liquid. So I have tried eating smaller portions. Fail. Tomorrow a friend is taking me out for dinner to a restaurant. Now I need to watch the fatty foods and salt that goes into it. I really just want to lose the weight without having to think about it but that is wishful thinking. I have always been heavy. Started in gaining weight in 3rd grade and then when I got on psych meds, I just ballooned out because the side effects of the meds make you hungry. I find that the nerve pain med I take, neurontin, will triple fold my appetite. The hungry horrors come out the next day and all I do is eat. So I limit my nerve pain med to when the pain is so bad I cannot sleep, which is usually when I take it. So far my nerve pain has not been so bad. But then I have not been standing too long on my feet for some time now. Usually if I have a day of standing too long my feet will burn and have shock pains.